Chronic Illness, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Pespective, Podcast |
Genesis Amaris Kemp | Caregiving, Covid, and Corporate Grief
SHOW NOTES SUMMARY:
Grief is cumulative, and it’s cumulatively negative. Every loss we experience stacks on top of those before it. For Genesis Amaris Kemp, attending funerals started becoming a regular occurrence. Add the loss of loved ones before the Covid pandemic (and during) to the loss of a job during the same timeframe, and it can be challenging to find solid footing. Additionally, learning, for the first time, how to advocate for a parent in the healthcare system posed its challenges during this same period.
Genesis’s father walked into a hospital with elevated blood sugar. Three days later, he was paralyzed from the waist down, which was later identified to have occurred from a stroke. Additionally, he endured several other complications during his hospital stay that later caused a quick decline in health and, soon after, his death.
Trying to be a caregiver during Covid proved to show the disparity and gaps in the healthcare system. In addition to the losses she endured during the pandemic, she also was laid off from her corporate job in oil and gas. Genesis shares her experience of being a young black woman in a predominantly older white demographic of employment, describing that experience and sharing how one conversation with the company VP, and the experience as a whole, was empowering, heartbreaking, and eye-opening all at the same time.
The Covid Pandemic showed us where we have a lot of work and repair to do within the healthcare system and how we live and work as a society. Genesis shares the lessons she learned during this timeframe and how she’s become impassioned in serving others with what she’s learned.
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CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. Today my guest is Genesis Amaris Kemp and she is a visionary life coach, motivational speaker and author. She’s also a firecracker and a mindset hacker and a force to be reckoned with. I love that. Genesis is a woman that empowers others to speak up for themselves. Yes, it may be challenging, yes, it may hurt. But in the long run, she desires to encourage others to help those who may not have a voice. She’s a trailblazer, who wants others to live out their dreams, goals and visions. We all have been given an excellent purpose in life, it is up to us to walk it out and live, live victoriously. She is multifaceted and multi-dimensional, that cannot be contained in a box, or carp compartmentalized, I love that. Love that bio, that was fun to read. Thank you for so much for that.
Genesis Amaris Kemp 0:52
My pleasure, Victoria. And thank you so much for having me on your platform. It is attained. So our roles are reversed since I had you on my show.
Victoria Volk 1:04
Yeah. And I think we have a lot of the same values and like mission in life. And you know, you just want people to open up to their own potential, right, and to live into that potential. And I know what brings you to grieving voices is that you had a lot of loss in a short amount of time, and really not even that long ago. So how about we start there?
Genesis Amaris Kemp 1:26
Yeah, sure. So my grief journey started. If I go back to when I lost my little cousin, who was like, like a sister to me, we were only three years apart. That was 2015, she lost her battle with lupus, she was only 20 years old. And she had a tragic death where she fell off the toilet, the toilet and bashed her head into the sheet rock. And we’re not sure if it was the medication that they gave her that interacted with something else. So that was a hard death for me to deal with in 2015. Because Vanessa and I were super, super close. Then in November of 2020, my father passed suddenly, due to medical negligence. So eight days after having a surgical procedure, and how that how that journey started for me was my dad walked into the hospital just for his blood sugar levels being elevated in the middle of the pandemic. Three days later, we found out that my dad was paralyzed from the waist down, which was just alarming to us, because I’m like, How does someone walk into the hospital? And three days later, they’re paralyzed? So was it the wrong medication? Did my father have a stroke, I just going through the processes of elimination to kind of pinpoint the root cause analysis of what happened. So then that led me to really stepping up to be a patient advocate for my, for my dad, especially in a time where the hospitals were overpopulated with patients and understaffed with physicians and CNAs, doctors and etc. And it was unprecedent. So that that was very hard. There’s more things that happened there. But then the next of significant loss was my grandmother on my father’s side. So she passed nine months and five days from my dad. So it’s like, all the motions came back up again, because it was the same cemetery. She wanted to be buried at the feet of my dad, and just going through all of that created some triggers in me because it was like I was reliving it for again, and with her, it was like she had a slow death, because she fell in the bathroom, similar to how my little cousin had fell. But my aunt was able to turn her over. So whenever my aunt told me that all the emotions of when Vanessa pass came rushing back, and it was hard to compose myself. And since we we currently, we currently live in Texas, and the hospitals were once again over staffed with patients, so the ambulance when they came to came to the house, they pretty much told my aunt that the hospitals were on Drive by status, meaning that there may not be be a room or a bed available. So they pretty much you know, try to help my grandmother, but they said there was nothing else that that they could do. So they pretty much left her lying on the middle of my aunt’s floor, where she ended up passing away slowly because they couldn’t take her to the hospital. So that was a horrible experience and another form of grief. Then the third incident that happened it in regards to lose a loved one was when my grandmother on my mother’s side pass after we got back from the Caribbean, she was 99 years old. And we had just had like a amazing Christmas, we went there, it was the first time, my husband got to meet some of my family down in the Caribbean that was not able to come when we come over when we got married dude, like visas and different stuff. So that was a loss there. And then before that, just backing up the other loss that I had in between all of this was losing my job from corporate America. So I got laid off from oil and gas, along with 19 and 1900 other people in the middle of the pandemic.
Victoria Volk 5:47
That is a lot. That’s, you know, when I say joke about it, it’s not even a joke. But you know, you hate to joke, but it’s kind of, you know, when you look back, it’s like, Wow, COVID really does ruin everything. You know, that’s what I say COVID ruins everything. That’s a lot. And I just want to extend my heart in thoughts and prayers to you and your family. Because that really wasn’t that long ago. And so I want to start or go back to with your father, did you ever find out? What caused his death? Specifically? Like, did he have an emergency, like a medical event? Or do you did you ever find out?
Genesis Amaris Kemp 6:33
Yeah, so we found out bits and pieces. So for the paralysis, we figured out that my dad had did have a stroke, even though one facility told me that he did not have a stroke. So they pretty much lied. But it wasn’t until we got to read rehab that they said, Oh, he has all the signs and characteristics of a stroke. So had they caught it sooner, they could have you know, did preventative measures to help, you know, rehabilitate him faster, or we could have got him to a nerve center, then that led my dad to get a bed sores or sacral wound, which ended up becoming infected, which he got sepsis. So in order to get rid of sepsis, you have to go through a lot of blood transfusions and different stuff like that. That also led him to having emergency neck surgery. And then from emergency neck surgery. There was like so many other things that you know, happened there that I don’t want to be long winded. So it was a hard process. And then it got to the point where my dad just felt like he was not getting adequate care from going from one hospital to rehab them back to the hospital because he got worse in the rehab, where his stomach began to swell and distend. And it was just so hard. Like you could just feel my father’s stomach it felt like rock hard to not be able to see family because the hospital’s been on lockdown. Because of the the COVID numbers rising so high. So they stopped visitors. And then my father came home. So I tried to do the best I could to be like Home Health along with bringing in the appropriate disciplines like OT, occupational therapy, PT, physical therapy, having a nurse come in having a person come in to clean and stuff. And that’s a lot of resources. And you know, insurance only covers so much so we didn’t have full time care. So when they weren’t there, it was all hands on deck, which hurt either myself, my mother and then whenever my husband wasn’t working my husband, but it was very hard and strenuous. And I tell people, my hands go up to caregivers, because people don’t realize how much a caregiver goes through.
Victoria Volk 8:46
Just what was that timeframe from start to when your father passed away? Like how long did this ride out?
Genesis Amaris Kemp 8:56
So May to November? So not that long?
Victoria Volk 9:00
But even five months can feel like five years, right? Yeah. I just had a conversation that I recorded with a patient advocate, actually, she had her own personal experiences with her husband. And it, it really pushed her forward to now be a patient advocate. For she had shared a statistic something to the effect of, well over 200,000 deaths occur every year to medical negligence.
Genesis Amaris Kemp 9:32
I would love to talk to her so yeah, yeah,
Victoria Volk 9:35
I can connect you for sure. And given that, you know, I want to discuss this because I think it really is really important. What do you feel like? Personally in your experience? Do you feel like race played a role in your father not what do you feel like COVID was the hierarchy Do you have that? Or do you feel like that race did play a role in that, too,
Genesis Amaris Kemp 10:04
I think it was a little bit of both one definitely COVID. Because it was a time that no one really projected. And then also, the race factor also played a factor in that as well, because of quality of care that someone who is a person of color versus someone who’s not a person of color, and then you can even break down the demographics a little further between a person who has insurance and a person who does not have insurance, because there’s different tiers. And so when my dad was a person of color, he did have insurance, but he also was in South American descent. So I think all of that played into a factor. And then another thing that one of the nurses said, to my father was like, Oh, you’re surely gonna die if you don’t comply? Because my dad will question like certain treatment. And I feel like as a patient, you have a right to question what treatments are being administered to you. If you feel like it does not agree with your body that is your right as a patient, and for that nurse to have said that, I wish I was there that day, because I certainly would have would have reported her.
Victoria Volk 11:10
And the other layer of that too. And thank you for sharing that I just because as an end of life doula that was very much a part of our conversation and training. And part of the training was that the disparity of care at end of life for palliative care for access, for people have color or in different regions or areas of the country. And so that was a huge part of our training. As an end of life doula. And so I feel like that is an important aspect of healthcare, too, that often doesn’t get talked about enough. Is there anything else about that, that you would like to share? I want to give you a chance to,
Genesis Amaris Kemp 11:50
yeah, I feel like whenever you go into a certain practice, you need to be open minded, that people are coming from various areas and backgrounds. And you need to be sensitive of their needs. Because even though you are a physician, you don’t always have all the answers. And you’re not the end all be all, and you should really see it as a partnership with your patient and actively listen, and it’s a two way street. So you can make sure that that patient has the best care, because if the shoe was on the other foot, and that was your loved one, how would you like your loved one or yourself to be treated?
Victoria Volk 12:30
Now it brings to mind something that I think a job description would be excellent for hospitals would be, you know, an objective person, you know, so like in and at end of life and palliative care, you have the end of life doula that is there on behalf of the patient, first of all, number one, but also for the family. They’re, they’re the bridge between the healthcare staff, the patient and the family. And so they can answer questions they can share with the family, what to expect when their loved one is dying. They can be the advocate for the patient, things like that. And I’m thinking what an amazing thing that that would be for someone for families in hospitals who are going through long term issues, or when their loved ones in the hospital for a long period of time to have that go to person right to be your advocate, because I don’t think we really, that’s really not a thing, is it?
Genesis Amaris Kemp 13:24
No, it’s not. And people don’t realize that the hospitals do have patient advocates, but they’re not a lot. And just like they have social workers, and they have case managers and etc. But if a patient does not know what the resources are, while they are in hospital care, then that also prolongs the help that they’re that they’re given. Like, for example, I just found out that there is a music therapy person at the cantor facility that my cousin is currently undergoing her treatment. And I had no idea that was a thing. But unless she would have told me or the person came around, I wouldn’t have known just like they have a chaplain, they have so many different resources. And I think that we have to do a better job educating the patients, but also the hospital to bridge the gap and just close those gaps with letting them know these are the things that you’re entitled to. And it shouldn’t always be a numbers game, or profit over people. We need to get back to humanity and have compassion, have empathy, and realize that we’re all human beings, and everyday is not going to be the same. But remember why you signed up to do the job that you did?
Victoria Volk 14:42
Yeah, and I think questioning should never be, you should never be shamed for questioning. It’s, you know your body better than anybody else. And that’s, you know, yeah, my son had an incident just a few months, several months back and I was a questioner, probably As annoying as all get out, but you know, you almost you have to be right you have to be because no one’s gonna care more about you than you or your loved one. Right? So, yeah, it is up to us to ensure that’s the thing like with COVID, too, and then they they created this barrier, there was this barrier there where you couldn’t be the advocate, you couldn’t even be there. And so you’re sitting at home wondering, Is he getting the care that he needs? And how did you deal with that?
Genesis Amaris Kemp 15:29
That part was hard. So we sent a tablet with my dad, so we can at least have video calls so we could see him and stuff, especially since we knew that he was suffering from that paralysis from the waist down. And there were times where like, I would be on the phone with him and he was hitting the nurse bell. And it took over 30 minutes for a nurse to come to his room. And like I sat there waited on the phone. And then when I called the nurse desk, they said, Oh, we were just in there. And that literally like if I could turn red Victoria. Or if steam or smoke could come out of my nose and ears like a dragon, you could just picture how bad I was because like, one of my pet peeves is lying. Don’t say you were just in the room when I know I was on the phone. So that was just one incident. And then another thing that happened out of all this stuff is I lost another dear friend. So my best friend’s dad ended up passing after he had surgery to like a few hours. And then my friend was misdiagnosed. And her organs ended up shutting down only to find out that she had lupus. So in the height of the pandemic, they put her in a medically induced coma for four days. And it was just horrendous. So all of these things have happened, along with me losing loved ones. And then so just me having to be a patient advocate and help with other people was also mentally taxing. And the fact that you couldn’t get it get inside some facilities was very alarming because certain policies were not being adhered to, because of the fact that the hospital was short of staff.
Victoria Volk 17:17
Well, that opens them up to liability and negligence, right? Yeah. I didn’t realize that lupus could be deadly like that. And you’ve lost two people, right? It was.
Genesis Amaris Kemp 17:30
So one was my cousin. And then I almost lost my friend who was just diagnosed with lupus, she ended up making it out of the medically induced coma. Then she had a stroke, similar to my dad. So a lot of the symptoms that she had actually mirrored what my dad had. So that was another trigger for me. And but the good thing about her is when she went to a rehab, the rehab facility was honest with them, and said, there’s nothing that we can do to help you. But we can refer you to a neuro center. And when she went to that neuro center, she had to learn how to walk again, she had to learn how to use her arms again. And that was the best thing. And I said, Man, looking back, I wish I would have known about this neuroscience neuro science center that worked on neurology and stroke patients. So I could put my dad there versus the damn facility that I put my dad in for rehab, because it was like everything was like Rush gogogo. Because whenever the insurance is paying, they only cover a certain amount of days in a hospital a certain amount of days in rehab, certain amount of days, and long term acute care, and etc. And they like are rushing, you don’t have enough time to do all your research. But if they would have given me like a week like, hey, we need to move that. And based on insurance, I would have, you know, been better prepared. And yes, my, my husband even got on me because he was getting frustrated. He’s like you should have been researching this. I had no idea it was going to come to the point that I needed to hurry up and move him to another facility and I and you don’t always know what insurance is going to cover. Because sometimes they change things on 30 days basis.
Victoria Volk 19:10
Well, I can’t imagine how much time you spent on hold on the phone. Yeah, dealing with all the different departments and agencies and insurance and yeah, yeah, I can’t even imagine. So how did you What got you through?
Genesis Amaris Kemp 19:28
So after I lost my dad in November of 2020, what really helped me was podcasting. I just opened my phone, and I started talking to myself in the phone, because I got so freakin tired of people saying, Oh, I know how you feel. And I’m like, do you have you lost a parent because both of your parents are very well been alive. Or, um, you know, he’s in a better place, which I’m like, Okay, I understand that. For the spiritual people sometimes come from a religious and spiritual background. Oh, well, the Lord giveth and the Lord take it away. You know, the Lord would never put it more on us than we can bear Genesis. And you know, we all have to die some day, or just whatever. Instead of like asking, you’re saying, I don’t know how you feel. But is there anything that I could do for you, versus pre empting your assumptions and judgments onto me, knowing what I was dealing with, because you don’t know the triggers? You don’t know. Like other things that I went through, you don’t know that my dad and I was super, super close. We had a good relationship. And there’s oftentimes people don’t have a relationship with their father or they don’t even know their father. But I tell people, my dad, we were like, you know, Ben and Jerry, we were like two peas in a pod. That was like my person that like I did, though, to talk about anything over over my mom, even though him and my mom were mayor for 30 years. And he was also my Road Dog. Because times I would want to go to the mall, my husband hates being in the mall. For hours or days, I would just call my dad and he would go with me. Or like, if I want to go to the grocery store, if you could just come along and push the car. It helped me load up the car with the grocery, and just different stuff, and just not to have him there. What was hard, and then when I found out that I was expecting to know that he was a great grandfather to like all of my nieces and nephews, but he will never get the ability to spend time with my child, which him and my mother live with my husband and I. So we we all live together. Like I was like this would be the first one in the house. So how cool would that be? For Dad and Mom to be here? Like? Those are our babysitter’s right there.
Victoria Volk 21:49
What was your dad? What’s your dad’s name? Earl? Your face just lit up a PIN people can’t see this unless they watched the video but your face just lit up as we talked about? What was what are some of the greatest lessons that you that your father passed on to you and that your grandmother shared with you too?
Genesis Amaris Kemp 22:07
So one always know who you are. He he always instilled like scriptures in me especially whenever I have like bad days or I you know, started to question God or like moved away from from God, like my dad was always there. Another thing was always follow your dreams and passion. So like, before I went to real school, I got a real degree like my dad paid for me to go to acting school, which I always wanted to do like, something like that. But I actually got selected for I MTA LA, which is the international model talent agency for Los Angeles where you could go audition, and in front of all the big names of who’s who. But then my mom, she’s very conservative, and my mom’s Caribbean. So she’s like, Oh, no, if they want you like they will pay for you to go there. We’re not spending five grand like that. But what you can do is go get a real degree like your brother, and my brothers are engineers. So like, my mom was very, like school focused and driven. And my dad was always like, oh, yeah, if you want to do that, like go after it. So that’s one thing I miss about my dad, he like he would talk to anybody who would give you the shirt, off your off your back. And since we are a blended and multicultural family, like my dad did not necessarily see color, because his mom was half white, half black. And he was just so open, like to different cultures and people and very loving. And that was a good thing that my dad is still because now we live in a society where everyone is so polarized, whether it’s religion, whether it’s sexual orientation, whether it’s race, or whatever. And I think if we get back to realizing that there’s more commonalities that we have, versus highlighting the differences, we would be better as society. So those are really good values that my dad instilled. And then my grandmother, her and I did not get close until she came back to attend my husband and I’s wedding. So just a humbling experience was the fact that, you know, my grandmother needed help taking a shower. So I helped bathe her one day, and gosh, I have to bake grandma. So that was like, very, like humbling. And she was very sassy. And then, you know, I found out that she really likes to play dominoes. So her and my husband got to play dominoes. So that was cool. My she was a great baker. She loves crossword puzzles, and that’s something I like to do. So she was doing her crossword puzzles and then I started doing them. And when she passed on, like I got all the crossword puzzles that she had left. From my aunt’s house. I was like I got dibs on great on grandma’s house. puzzles. So that was cool with my dad’s mom. And then, with my mom’s mom, the beauty of that was the fact that she was 99. And when we went there to the Caribbean, like she knew that I was expecting before I can even tell her. So it was like a cool bonding experience that we had. So she got to give me her blessing, and speak life over my, my, my baby, and just all of those things. And then she really, she really got to engage with like my husband. And so them to like, started to build a bond and crack jokes. So it was like, kind of kind of cool to see that. And I was like, Oh my gosh, like, this is just amazing. So each one of them have like, amazing things that are remnants that they left
Victoria Volk 25:47
Their voice you just lit up again. You can see have so much love for your family. And as we all do, but you just saw you lit up talking about them. I do wonder, has there been grief? Or was there grief about that potential dream?
Genesis Amaris Kemp 25:47
Oh, oh, yeah, cuz I told my, my mom all the time, even now, I could have been on the big screens with Tyler Perry, I could have had my dream car by now. My black Lambo sitting on black with my blue neon lights. Just or just like the pipe dreams are just different stuff like that, because that is like my personality, I love talking with people engaging in different conversations. And just when you could take yourself out of your own reality and submerge it in something else, to really allow your creative, creative juices to flow. I think that’s amazing. And I have a lot of love for like the producers, the writers, the illustrators, and etc. Because there’s so many things that go involved in in that, that people from the outside looking in, don’t realize. And I was like, you know, at the end of the day there there are people just like we are even though they have like, you know, the nice, the nice house, a nice car, and etc. But like I was like money doesn’t make you but money does act as a vehicle to get you what you want. So you could like give back to society, because there’s so many charities that I want to partner with, like lupus and I want to partner more with the cancer center and find find cures for diet for diabetes and different ways to pair like a nutritionist with every like diabetic person so they could can reverse diabetes, and just different stuff like that I have so many goals and dreams. But like without having all the resources, you’re not able to check those off your list just yet I say just yet, because I do believe in manifestation and the law of attraction.
Victoria Volk 27:47
Because you brought up, you know, career and dreams and all of if you can share that job loss. Was that like a blessing in disguise?
Genesis Amaris Kemp 27:57
Looking back, I think it was because what a lot of people don’t know is that we tried for so long to conceive. And it just wasn’t, wasn’t happening. And I’m not sure if if if it was because my job was very high stress, or I was just very unhappy there. Especially whenever I knew that I was being underpaid under value. And I think didn’t did not change for me until I spoke up after the whole Black Lives Matter incident when I was in the Vice President’s meeting, and that’s where I got a $20,000 salary increase one week later, good for you. And I got a bump in my classification level from 15 to 22. But why did it have to take me speaking up about my stories with personal racism and professional racism. And it was just, it was just heart wrenching. And I think what really gave me the option was knowing the fact that I had my book out on the market and I was doing work in the diversity, equity, inclusion, and belonging space, outside of you know, my day to day job in corporate but I feel like when you come from a good old boys club that male dominated, older, Caucasian white men, like you have to work twice as hard to be seen and heard without doing things that compromises your morals and values because sometimes people are just wanting to get ahead so bad like they do things that are unscrupulous or things that would demean who they are
Victoria Volk 29:31
Yeah, yes all of it everything you shared good for you and I imagine that that’s like how has that played in your those experiences played into the work you’re doing now?
Genesis Amaris Kemp 29:42
Oh, they’ve played into it drastically because being laid off has now allowed me the ability to like do my podcasts connect with other people? Yes, it it sucks not having the dual income that I had with my husband is sucks not having, you know the perks of staying at nice hotels are having a limo pick you up to take you to the airport for business travel, or corporate Amex card like those things suck. But I was like when you focus on the vanity, you also lose a sense of who you are by you allowing money to buy you to the point where you’re hushing yourself because the money is so good. So it was a wake up call. And it helped me grow more personally, as well as professionally, to realize that, you know, you could have all the money in the world and still be unhappy. You could have the good salary and live in the nice neighborhood, but still feel feel unhappy if you’re not fully fulfilled in yourself. And if you feel like you’re just going through the motions, because if that’s the case, and you’re just living, you’re not fully existing and enjoying life.
Victoria Volk 30:46
Would you say that that’s what your grief has taught you? Yeah,
Genesis Amaris Kemp 30:49
I would definitely say, grief has taught me that it’s a hell of a journey and a ride. And there are some days that I have to take a mental health day where I feel like certain things will happen where I feel triggered, like right now, I’m funeral out. Like, I don’t want to go to any more funerals, because it’s been a lot. I am tired of seeing so many people suffer from the pandemic or lose their lives, because since I’ve been doing the podcast, other people have shared with me their stories, because I’ve been open about sharing the loss of my dad, and what he went through, and they’re like, oh, my gosh, I could resonate with that. And it’s heart wrenching, because they’re not just African Americans, or people from all walks of life that it’s happened to. Another thing that just bothers me to put the fact right now is, I’m not sure if it’s happening, you’re safe, but the abortion ban law, because you never know what a woman is going through, you don’t know, if she got her test results back and found out that, you know, there’s something wrong with the chromosomes of her baby, and her baby may not make it. So abortion would be a way to help herself and help her child. You don’t know if that woman was raped, you don’t know if you know that woman is in a abusive relationship. And she was forced or coerced into something that you know, she she’s not in a good mental state to be a mother or whatnot. So that that’s heart wrenching. And you know, there are people out here who are, you know, privileged to have a baby and just have a baby. And then they don’t value that they create it life and they just get rid of it versus bringing that baby to full term and giving that baby up for adoption to a loving home. There’s so many things right now, that just agitates the hell out of me. And I feel like having a podcast, I could talk about what I want to talk about what I want to talk about it and just bring awareness on the various subjects while cutting through the fluff because we have so much fluff in social media, we have fluff on TV. And I think people want to hear real, raw, transparent conversations, to know that it’s okay to not be okay. It’s okay to take a mental health day without someone thinking that you’re crazy or you need to be committed, or whatever, it’s okay to pull back the negative stigmas. It’s okay to stand up for what you believe in and be unapologetically you.
Victoria Volk 33:17
There’s so much in what you shared. It’s an it’s also people can believe and have the right to believe what they believe. And it doesn’t make it wrong. And it doesn’t make it it’s just different. I don’t know if this is true, because I haven’t read the whole thing. Or maybe you can clarify it for me on the abortion law there supposedly something that says that women can abort if they don’t like the sex of the baby, that that’s included in that.
Genesis Amaris Kemp 33:44
I have not seen that. But that would be alarming. If that was was our case, because that’s not a good reason to abort the baby. If you don’t like the sex of the baby. As long as your baby is healthy, you should continue to go on with that baby. But then I don’t know the context and pretence of what that woman may be struggling with. Because pregnancy can be a very complicated process. There’s I like to tell people, there’s the good, the bad and the ugly. And I talked about this recently with the guests. I was like, people see the glamorous side of pregnancy, but they don’t see like your left boob may just start leaking for no apparent reason one day, while you’re in your pregnancy, your butt may hurt from sitting down for so long. Some women have the varicose veins that just pop out they’re hideous or the stretch marks or whatever. And I feel like you need to have those conversations. But going back to that clause, I’m definitely going to have to look that up. Because I would just call BS on that one.
Victoria Volk 34:48
Well, that’s the thing. It’s like I think some laws they could be better written right? And I think if if people if the sides could come together and really talk about what they’re paying asking, right like, Does this seem extreme? Or does you know what I mean? Like, yeah, find a common ground and an understanding of that both sides can agree to but back to you, I want to thank you for your time today. And I want to give you an opportunity to share where people can find you, if they want to hear more from you.
Genesis Amaris Kemp 35:20
So you can head on over to my website, which is genesisamariskemp.net. And I’m gonna spell it. So it’s a G E, N, E, S, I S, Amaris A M, A, R, I, S, K, E, N, P.net. So have a link to my Instagram, my Facebook, you’ll get a free chapter of my book, which is the first chapter of chocolate drop in corporate America, from the pit to the palace. And for those of you on the video, I will hold up what the book looks like. So that is the cover of the book there. So you see that it really shows shows that diversity, that equity and inclusion on the book, there’s a world in the background, letting people know that this happens worldwide, not just in America. And I’m also giving away two other freebies on my site, which is under the features and merchandise tab, which one is a health assessment because I truly believe in order to have longevity, it starts with nutrition and overall wellness and exercise. So there is a health assessment there so you can analyze where you are currently, and what vehicles you need to use to get to where you want to be. And then there is a free product. It’s the Kiani sunrise, which is the super fruits and super nutrient all in one pack. So definitely give you that energy. And just to boost you up especially if you don’t like certain veggie vegetables or certain fruits, you’ll have everything that you need in one packet. And it’s a quick drink, you could drink on the go. Unlike the garbage that’s on the market, like a monster a five hour energy that boosts you up like a rocket but then you come crashing down. So those are three freebies that I’m giving. And then I also want to encourage people to check out some of the other things that I have going on which all info can be found out on my website via the different tabs.
Victoria Volk 37:25
And what’s your podcast called?
Genesis Amaris Kemp 37:26
My podcast is called Gems G, E, M, S with Genesis Amaris Kemp, and it’s called gems because we all have incredible gems to share. While we are here on earth, and the core pillars are to educate, inspire and motivate, plus intersect the dots between diversity, equity, inclusion and belonging.
Victoria Volk 37:52
I love it. I love your message to so thank you so much for being here. And remember, when you unleash your heart you unleash your life. Much love.
Cancer, Childhood Grief, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Resources |
Dan Goldberg | Finding the Glory
SHOW NOTES SUMMARY:
Was your childhood filled with joy and surrounded by love and support? There may have been some challenging times for your parents or even for you, but what if you indeed did have the ideal life?
Dan’s childhood was amazing. So when grief hit home hard, and hard it did, he was ill-prepared. He had experienced the death of his grandparents, but even then, there was little discussion about death or grief. His parents did their best to shelter him and his siblings from the sorrows of life.
So when his father was dying of cancer, there was a strong message shared by his father and other loved ones that his father would get through it, that he would beat cancer. And when the next cancer treatment worked, they would take that amazing family vacation. However, that family vacation never happened.
Before Dan turned 20, his father died. And, before his 25th birthday, his mother would also die of cancer, the kind that’s hard to pronounce and little known about. What are the odds?
Rather than taking those odds and allowing them to destroy his life, Dan took the advice his mother gave him before she died that shook him straight and went on a quest for healing.
RESOURCES:
CONNECT:
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NEED HELP?
- National Suicide Prevention Lifeline: 1-800-273-8255
- Crisis Text Line provides free, 24/7 support via text message. Text HOME to 741741 to connect with a trained Crisis Counselor
If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.
Are you enjoying the podcast? Check out my bi-weekly newsletter, The Unleashed Letters.
CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. today. My guest is Dan Goldberg. He is a serial entrepreneur and host of the bits of gold podcast, where he explores thought provoking topics, navigating tough circumstances, and ultimately, how you can build a purpose driven life no matter what. On bits of gold, Dan discusses waking up to who we truly are finding our purpose and the importance of building our dream life through unfiltered conversations, personal experience, and inspiring interviews. Thank you so much for being here, Dan.
Dan Goldberg 0:34
Thanks so much for having me. It’s great to great to see you again.
Victoria Volk 0:37
And I was a guest on bits of gold. And I just love that whole bio. I love how you describe the podcast. And I just I think the name is really clever, too, because I think so often, in our stories, there are bits of gold that we can’t really see when we’re in the thick of it, right, but we can eventually see once we’re to the other side of it. And that’s why you’re on grieving voices. Because somehow, some way you have found the other side of what you’ve experienced, in a lot of ways, you’re probably still going through it because grief is like that it kind of shows up when we least expect it. So what brings you to grieving voices?
Dan Goldberg 1:19
Yeah, I was gonna say still still moving through it. I think that journey is, is is a journey. And it is there’s, there’s never really a destination, right? Like, I think you’re constantly on grief, grief, once you experience grief, it’s with you forever. And it morphs. It evolves, it takes shape in a new life and a new light. And as as you get older, and as more time moves on. But I think grief is something that you always carry with you once you experience loss, regardless if it’s regardless if it’s a traumatic loss or not.
Victoria Volk 1:54
And so what was your first experience, even in childhood, with loss?
Dan Goldberg 2:01
Yeah, so I’ve actually I feel like so I’m 28 years old. And I feel like, by the time I turned 25, I experienced actually a pretty significant amount of loss in my life. The two most the two most traumatic ones, my my dad passed away when when I turned 20 A couple of months prior to me turning 20 years old, my dad passed away. And then my mom passed away a month after my my 25th birthday. So within a five year period, I lost both my dad and my mom. But prior to that actually growing up I I had lost a both my grandparents, my grandma and aunt and a dog. So I feel like I’ve actually had like a pretty wide a lot of loss at a at a fairly young age.
Victoria Volk 2:51
And how can I ask how your parents address those losses? Because often we just don’t know as parents what to do or what to say?
Dan Goldberg 2:59
Yes. So I would say the first the first. The first loss that my grandma was the first person that that passed away in my direct family. And I was like, so young, I really don’t have any memories with her. I don’t even remember how that was handled or how my family navigated. I really don’t remember that my grandma was fairly older. So I don’t have any memories there. When my aunt passed away, that was completely unexpected. And she died in the middle of of of the night. And I want to say it was days before or maybe even on her 50th birthday. But I remember my parents came home and they my parents were out to dinner, my parents came home my sisters and I were on the couch and they told us that tell us something and my aunt my They said my aunt passed away. And we were caught we were close with this. And and similarly, you know, like I just didn’t really I wasn’t at a point in my life, from an age standpoint that I can really understand comprehend. What what that actually meant. Yeah, you know, it’s, it’s, I really have never spoken about my end. But it is. It’s interesting now looking back, just like how limited my understanding was of what it meant that she had died. And I remember my parents telling me that but I really remember not being able to comprehend or understand and I’m sure we’ll get into it later on this podcast. But I’m very involved now in an organization experience camps, which is a free one week camp for kids that have lost loved one, ages nine to 16. And it’s only a five day camp I go every single summer and I think about that a lot while I’m at at the camp volunteering as a counselor, just like when I’m with kids who are 910 Even 11 years old, how they’re, what they’re processing and how they’re able to try how they’re trying to understand or what it really means the person is dead and gone. forever and what that means, physically, obviously, I’m speaking.
Victoria Volk 5:04
Do you remember how old you were when your aunt passed?
Dan Goldberg 5:08
Um, let’s see. I was definitely before maybe 10 or 11. So, but yeah, it’s like it’s even my memories with her are very blurry. But I just vividly remember really not understanding or comprehending, a comprehending death. And, you know, I could I could actually speak to that a little bit just to get off my aunt, specifically with my dad. So my dad died when I was 20. The leading up to his death, I had just transferred into a new college, my parents dropped me off parents dropped me off in August, and Parents Weekend was around Thanksgiving around November time. And my dad traveled a lot for for work. And he had just gotten back from a trip overseas. And my dad was like, I’m not feeling too well. He’s and he said, I’m not sure if we’re going to come up Parents Weekend or not, but I want to see you. So I said, do whatever you need to do, if you want to come up, come up if you can’t come up, because you’re not feeling great. Whatever you want to do, he ended up saying, You know what I really want to see you so he ended up coming up. And when he got there, he looked completely different. He was very, like his skin color was very, very pale. He looked a lot skinnier than he then he was. And he just didn’t look well. And we went out for we I hung out with him and my mom during the day we went out for dinner. And the next morning, he woke up and he said, You know, I’m really not feeling well. So my parents decided to go home, they didn’t stay the weekend, they only say that one night, they drove home. But instead of going home, they made a detour and stopped to the hospital. And originally they thought maybe he had maybe he got something from traveling overseas, maybe it was the flu, something like that. And they were running all these different tests. And about like a week and a half later, they called me and they said that has cancer. And it was even in that moment that and at that point, I was 20 years old, I really couldn’t comprehend, or understand that, like death was even a part of the equation. When my parents told me my dad was sick. My dad called me and he said, You know, it’s not I we have to tell you something, we have to talk to you. I I have cancer, that I’m going to see the best doctors in the world and I’m going to be okay. And I have I have actually a lot of a lot of my uncle’s are and answered our doctors or work in the hot but hospital or health system. And my my uncle called me after. And he sort of just reassured me you know, my dad’s gonna get the best care. And he’s gonna He’s gonna be okay. And we’re gonna get through this that was sort of like the the messaging that my parents sort of told me from the get go that my uncle sort of told me, and seven short months later, he passed away. And as as that as through those seven months, my dad was progressively getting worse, and I was away at school, but I’d come home for the holidays. And I’d come I’d make some trips to come home just to see him. And every time it was progressively worse and worse. So when I first saw him he looked very skinny pale. Next time I saw him he was using a walker. Next time I saw him he was using a wheelchair. Next time I saw him we put this like the electric chair in the on the stair so we get up from the first floor to the second floor. And the next time I saw him he couldn’t really move from his bed to the bathroom without being completely out of breath. And then it was like he was just sort of stuck in this chair. And toward towards the end he was really just like stuck in this chair. And we got like one of those reclining chairs for him. And he would just sort of stay there drink a lot of liquids and he was going to get chemo treatments. And even throughout that entire process. There was never truly a point in my mind where I said, my dad is going to to die or that that was even sort of a that was even a part of the the possibility in the realm of possibility. And actually days leading up to his his his death. My dad, my dad ended up not being able to really walk towards the end. And he had a lot of hip pain. And he ended up going to the hospital to get some radiation to his hip. And I was supposed to be traveling for for like the weekend to go to Boston for for for work. And this was this was Friday, and I went to the hospital to see him. And I said that Should I cancel my trip. I’m just going to Boston for the weekend. But I don’t mind I could stay here. And he said nothing’s going to change between now and when you come home on Sunday. So he said go on the trip. And it was at this point that my dad sort of in that same at that same day earlier in the day my dad had told me there’s nothing more that doctors can do from a chemo standpoint. But they’re going to raise my hip. And I’m going to be able to have a lot more movement after. And we’re going to do like one more big family trip. And I’m going to be okay. So, you know, I saw I said, Okay, do you want me to stay and he said, Go go to Boston, everything’s going to be fine. And I ended up giving him a kiss, and went to Boston. And Sunday morning, my mom called me and she said, Come home as soon as possible. got in the car first thing in the morning, drove right to the hospital. And at that point, they had like, my dad’s pain meds, and he wasn’t, he was, he wasn’t really he wasn’t really lucid at that point, he was just sort of sleeping and making some uncomfortable, like, just noises, you know, it was clearly he was, he was clearly going to die. And the doctor had come in and just said, you know, he’s, this could go on for a couple days, several hours, they didn’t really know, but that he was going to die. And that was, it was really in that moment that, like, I collapsed, and I ended up going leaving the room going to the waiting room. And I just remember like putting my head in my hands and trying to understand or comprehend that my dad’s going to die. And it really wasn’t up until that point where I really had even, there wasn’t even a thought or imagination or possibility in my mind. And part of it was definitely that my parents tried to shelter me or protect me from it’s funny, like the Protect me, but protect me from, you know, the, just the painful, the painful truth and the painful destination that we ultimately ended up at. I think my dad definitely tried to shelter, shelter me a little bit. And that was by choice. And that was his decision. But it definitely, but that was really like the first time that I realized that, hey, people, people do die. People do die young. And it’s funny, just since we started talking about my aunt, it’s even funny, having had those experiences and having lost my aunt and grandparents. You know, you understand obviously, as a young person that death is, death is like, one of one of the few guarantees we all know is our inevitable destination. But I really do think so often. And I would say that this was very much my life previous previous to experiencing significant loss and losing my dad, my life was really, everything’s good. Probably the things that weren’t of significance, I thought were of significance. And although you know that death is a part of life, you’re not really constantly living with that on your mind, thinking about people die, or those around me can die or those that I love die, or I can die you don’t really think of those things I really believe is someone who’s young, naive, and unfortunately, or unfortunately, unfortunately, hasn’t really experienced anything significant. You don’t really, I don’t think you’re walking around, really holding that, that weight that death is a real part of life and that it can strike in a moment’s notice with no warning, no rhyme nor reason. Things will happen and that sort of life. And I think that’s an you know, I’m sure we’ll get into it. But that’s definitely something that I carry near and dear to me now. It’s like that is so physically, spiritually, emotionally, it’s, it’s such a real thing at this point in my life. And knowing that that’s what’s that’s sort of like the bouncing board that enables me to think about life with this unique perspective, which has sort of been the guiding light in my life now now ever forward. But yeah, I just, I just don’t really think that we think about it as young kids, even young adults, even maybe adults, if you haven’t really experienced significant loss, I think, you know, I don’t want to say necessarily my, my dad, because his his sister died when later on in life, that was my aunt, but like, my mom really didn’t experience significant like growing up, we lived in such a happy household. And there were things obviously, where there were challenges or life circumstances that my parents had to navigate. But I have such a happy childhood and life as we knew it as a family, I would say was so happy that like we really didn’t experience the significant shitstorm that would come in my early 20s and mid 20s.
Victoria Volk 14:31
And I want to speak to that a little bit because we are a product of our environment, right? And so you can have two different homes where they can have all these different experiences, negative, impactful experiences, and it’s all negative and the worst always happens to us. And here’s another challenge and it’s really heavy energy, or we can grow up in a home where it’s even if there’s a challenge it’s, well you know what we got we’ll get through this And it’s there’s this positive outlook versus this negative outlook. And so although that served you well as a child growing up, and you know, it might be some people might even say, well take those rose colored glasses off, right? Because the reality is, is that crap happens. But it’s the outlook that your parents gave you. Right? That partially may have resulted in this inability to think about death as like this finality or like this, like this could ever happen to me. So it’s like, where’s the balance? Yeah. You know, because you can go, it’s like the pendulum swung very much the positive way, instead of the negative way, but yet, it didn’t prepare you. For what, for the challenges when they really did when it was really big. Right? When it was something really big?
Dan Goldberg 15:54
Yeah, well, so it’s definitely it’s, it’s interesting. When I look back at when my when my dad was sick, I had this extremely naive perspective thinking, Oh, my dad’s not gonna die. Honestly, there was one conversation I had with a friend who had lost his that young and he had told me, you know, maybe half of the conversations with your dad that you want to have. The advice was have these conversations you’ll want to have with your dad that you might want to questions you might want to ask him later on in life, but it’s like now I sit here as a 28 year old when I was 20. The questions I would ask him now, versus the questions I would ask him that are so drastically different than you know, it was sure we sat down we, I would we would talk about things. But obviously, he’s he’s not here to answer those questions today that are now on my mind. But anyways, that was my one friend. That was that was I had that one conversation with a friend. And that was the only time where like, death really was part of the conversation. So I had this extremely naive, and just like very innocent mindset around life and death when my dad was sick. On the contrary, when my mom was sick, it was a very different experience. My mom got sick when I was coming home from a 25. I was coming home from sorry, 24, I was coming home from experience camps. This was in August, and weeks prior, my mom had gallbladder surgery. And they said some they said that she had she had gall stones, and she ended up getting gallbladder surgery. And she she didn’t really like make a full recovery. I ended up going to experience camps. I volunteer for a week, I’m driving home from Georgia to New York. And when I get home, I get home pretty late at night, I go to sleep, I wake up in the morning, and I’m very excited. tell my mom about the week, all the kids that I’ve connected with the incredible stories. And my mom, my mom slept later than me, which like very, very much was not like her by any means. And I was sitting on the couch, waiting for her to wake up and she had no coming down. And she was she was in her pajamas. And she sat down on the couch next to me. And she told me that I’ve been diagnosed with cancer, but they don’t know what type of cancer, but we’re gonna get through this and everything’s gonna be okay. Sort of like, you know, the same very positive mindset around that we’re gonna get through this. My mom was having a tough time eating and keeping food down. And they were waiting for these test results to come back to try to identify what cancer it was what treatment she’d be getting all those things. And in the five days that were waiting, she really started to experience a lot of significant pain. And she ended up going to we ended up taking her to the hospital. And she checked in and from the moment she checked in, she never ended up checking out she was in the hospital for a little over two months. And they weren’t able to identify what cancer she had until the very end of her time in the hospital. Originally, they said she had soft gel cancer, then they couldn’t really identify it. She ended up actually switching hospitals then going back to the original hospital. And she had three major surgeries while she was in the hospital where they said we don’t know if you’re going to live through these surgeries, but we recommend going through with them. So with my mom’s experience, it was really the only words that I would use to explain the experience that we had with her was just like absolute hell torturous how like she went through these three major surgeries in a very short period of time. She was only in hospital for two and a half months. She had like a tube in her nose. That was how she was she was getting nutrients. She made it to one chemo treatment. And again, they didn’t really have a sense of what cancer they were trying to treat. And like I was sitting in the room with her and at the end she ended up being in excruciating pain, yelling in so much pain and you know you want to you want to do something to help the person but there’s nothing you can do. So, you know, I’m sitting in the room and they come in they’re trying to give her some some medication to try to ease the pain. It was just really hell. And she ended up being diagnosed with a cancer called undifferentiated pleomorphic sarcoma. And the sort of inside joke with my mom was my mom said if you if you end up get always like for a long time that if you ended up getting cancer, you want some, you want something that, you know, you know, typically the cancers that you hear of are the ones you want it, you’re gonna get a cancer, you want that cancer, because they know a lot about it, there’s a lot of money, there’s a lot of research towards it. And there’s more treatment to help those cancers to help people who have those cancers. So I was sort of like the the inside running running joke with my mom. And my mom ended up being diagnosed with undifferentiated pleomorphic sarcoma. And my mom made some joke when they finally said that sort of towards the tail end, just like, of course, this is the this is the one I got. But that so she was in hospital for these two and a half months diagnosed with his cancer. And really, after that first chemo treatment, very quickly, after they said, there’s nothing more that that we can do. And she ended up staying in the hospital, but moving into hospice care, and it was at that point that, you know, we knew she was days, weeks, months prior before she would die, but it was turned out to be about 10 days or so. But it was in that moment. It was in that journey with with my mom, where I had a completely different mentality and perspective around cancer and loss and death and all that, I would say that with my mom, I was hopeful. But I was very realistic that this story didn’t have a happy ending. And, you know, my, my one of my uncle’s, again, I have a few uncles that are doctors, I spoke to one of my uncles that stalked her. And he said, you know, with cancer, it’s like, his advice was don’t start Googling, don’t start researching. Because cancer is a one or a zero, you’re either gonna live or you’re or you’re not, there’s not, there’s not like, Oh, I could be in the 76% that will survive. You know, so he said, there’s no point to Google to start spending your time Googling and trying to figure things out, your mom’s either gonna be okay, or she’s not. But with this specific cancer, I knew that from the beginning that that was a real part of the equation and that, in the best case scenario, my mom was going to live for another couple of years. And I accepted that from the very beginning that life as I knew it, was has has changed once again, and my mom, she might live longer, but she’s going to die in the near future. And I accepted that really, from the very beginning. You know, some people I remember having a conversation with my uncle, and this isn’t to get into religion or spirituality. But My other uncle just kept saying, we have to be hopeful, we need to pray, we need to be hopeful, we need to be hopeful. And, you know, I told him, you know, if that’s what’s working for him, I support it. But I’m going to be supportive, but also realistic, that there’s nothing that any of us can do to change the outcome, the circumstance, and we need to accept that. And I definitely like, you know, I gave him an example, sort of, like, if you’re, if you’re on a plane that’s going to crash, you can pray, you can be hopeful, but the planes still ultimately going to crash. And you’re going to die if you’re on that plane, right? Most most likely. So you know, I gave him I sort of just gave him this example. And I said, this is my mom’s on on the plane that’s going to crash, there’s no, there’s no positive, there’s no happy ending to the story, we need to sort of accept the reality and be supportive. And that’s, that’s it. And that’s sort of where my, my mentality went through in that moment. And that’s sort of how I navigated those two months. Now, I was also, you know, I went to an extremely dark place where it was very hard to be to feel happy, and my life just revolved around waking up, going to the hospital, sitting in the hospital, going to sleep, going home, going to sleep, doing it again for two and a half months, and watching my mom progressively get worse. But, again, my personal experience and my personal ability to just be realistic about the situation and the cards that we were dealt was very pinpoint, I’d say.
Victoria Volk 24:02
Well, I’m just to your point of what your uncle had said to you. He’s saying this to someone who had already lost a parent to cancer, you know what I mean? Like, so it’s like, Do you realize who you’re saying that to? You know, it’s not just like, this is your first rodeo? Yeah, absolutely. You had already been through that. So did you feel almost kind of jaded or, like, and I, you know, I think this spirit spirituality or not even religion, but just like the relationship to God, or that that relationship that either you have it or you don’t. And personally, when my dad died when I was eight, that went away, like I didn’t have that sense of spirituality or anything like I was angry with God. And so did you find yourself feeling that way, especially after your dad had passed where, you know, you had this hope and you have this naive approach, in a way, did that change for you?
Dan Goldberg 24:57
I would say that with my dad, you My focus really didn’t become so much me it became much more helped my mom support my mom. And I sort of just followed almost like followed my mom’s footsteps, I would say my mom turned a little bit more in the spiritual direction, I was just like there to be with my mom, but not necessarily turning into God or religion or things, things of that nature, with with my mom when she died, would carry me after my mom died. So this will get get back to your question around spirituality and what sort of carried me through. But when my mom died, like leading up to days before she was she was going to die. Although I accepted that she was going to die, I was in a very dark place. It looked at my blinds are closed, but it looked like a day out like today, it was beautiful outside the sun was like beaming down. And I remember I was walking to get lunch with a friend. And so my friend had lost his dad growing up. So he had experienced a significant loss in his life. And this, this specific friend of mine is just like a very good listener. And when we sat down, I told him, You know, I don’t want to, I don’t want this to just be like me venting to you. You don’t need, I don’t want you to feel compelled that you have to say anything. He’s like, I’m just here to listen, you know, I’m not here to share my opinions. I’m just here to listen, I’m here to just literally say whatever you want, I’m here for you. And I really felt like I was in such a dark place I could not. And I’m really a happy person, I could not feel any sense of happiness. Again, it was like beautiful outside. And normally I’d go outside and be like, Oh, it’s a beautiful day. This is this is great. And in that moment, I like everything was gray. That’s really the only way that I could explain it. It’s almost like when you if you wake up and you just, you don’t want to get out of bed. It’s not necessarily you don’t have any aspirations. It’s just that there’s I felt almost as if there was no point there was there’s there was no point to get out of bed. There was no point to to do anything during the day because life life kind of suck. That’s how that’s, that’s, that’s really the feeling that I was feeling. And after that lunch, I went back to the hospital. And it was at that point that my mom told me that there was no more there was nothing more that they could do, and that she was going to move to hospice care. And I remember telling her life so unfair. First, the world took that from us. And that’s already enough. But now we have to lose you too. My mom said life is unfair. But life’s also glorious, she said you have to go and find the glory. And that was really the big thing that like instantly changed my entire mentality where my mom almost pressed it into my mind, it was it really was like in that in that one conversation where I was in this place where not not where I was suicidal, but definitely where I just was not feeling a point to get out of bed to to just go about my life at that point, like the lowest low the darkest place that I’ve personally ever done, was in that moment where like, I accepted that life is filled with hardship. And that’s, that’s life and you need to sort of accept it. But there’s also plenty of beautiful things. Plenty, as my mom said plenty of glorious things that you need to go and find embrace, and life sad balance of, you know, painful, but also yet so beautiful. And that was really like the, the shift. And when my mom had died, and in the eulogy that I gave at the funeral, I had said that I’m not going to focus on the why. You know, and I might spend some time thinking about why why is this happened. But ultimately, that’s not where I’m going to focus my time and energy, I’m going to focus on the what, what I’m going to do now as a result of the circumstances as a result of what I’ve lived through. And I’m going to focus on finding the glory despite, despite the unfair despite the shit, I’m going to focus on what I can do now as a result of the circumstances I’ve been put in, and that that I’d say is really was really the where I went to after my mom died and sort of, you know, in many ways what what led us to, to this moment now.
Victoria Volk 29:15
And you starting your podcast?
Dan Goldberg 29:19
Yeah, it’s starting the podcast getting involved in experience camps I’ve been involved for almost a decade now. And you know, I feel like I am on such a mission to help others who have lived through significant loss know that, you know, loss is unfortunately, a very real part of life but that it doesn’t need to destroy your define us and that it very much can, you know, people who experienced significant loss can still very much go on to live happy, healthy lives that they that they enjoy.
Victoria Volk 29:50
So you were a part of experience camps even before your dad passed?
Dan Goldberg 29:55
No. So I only I got involved. I’m almost so this is going to be my ninth summer So once my dad passed, I went, I went, I, I grew up going to summer camp. And once I had the opportunity to like, go back to camp in a more meaningful way, I sort of jumped at it. So once my dad got sick, I went I once my dad passed, I got involved right away.
Victoria Volk 30:16
Yeah, I’ve looked up the organization. I’ll put the link in the show notes. And that is something that I that would be an amazing way to spend a week in this. Yeah, you should come. I would love that. I’m in the sticks, though, of North Dakota. So anywhere I would go, I’d have to hop on a plane. And
Dan Goldberg 30:34
We have we have some people who come from last year because I COVID. But north from London, Australia. Oh, wow. Yeah. But we have we have we’ve grown a lot. So there’s camps all over the US, California, outside Chicago, Pennsylvania, Pennsylvania, Georgia. I think they’re opening up one in DC now and Maine.
Victoria Volk 30:54
Yeah, cuz that was not I remember I went to I went to one summer camp, and it was, it would have been four years after my dad had passed, I think it would have been about 12 or so. But it was a church camp. Okay. And I had an amazing time. I still remember that time, but it wasn’t for grief. You know, it wasn’t for, for me really my grief and things like that. But that, you know, and I talked about this on other podcasts, I’ve been a guest, but there wasn’t room for me to grieve, you know, as a child, so I internalized all of mine. And so, for you, you know, having that happen when you’re a little bit older, you have that maybe ability to you know, your approach is very different. And your outlook is very different. But I imagine though at that age, too, it’s very difficult. Like you mentioned your one friend, but wasn’t that difficult to find people your age that you could, that could relate to you or you could relate to them?
Dan Goldberg 31:59
Yeah, I would say definitely after my dad died, it was extremely difficult. I was going into my senior year of college, then everyone’s focused on partying, getting drunk. I’d say very limited schoolwork. Going out. It was it was an extremely difficult year for me. And I really didn’t I wanted to drop out so badly. I had like, my body was telling me drop out, go home, help, help around, help around the house, help your mom out. That was really all I wanted to do. One of the last things my dad told me, because I voiced to my dad numerous times while he was sick, I want to drop out I want to drop out. And he’s like, just get the damn degree that was sort of like, and then there was never any discussion. So that’s, that was sort of my dad’s wish. And I, I listened to it. But yeah, it was it was really challenging. I would say I’d wake up, and I’d wake up away from my mom. And I did not know. I did really didn’t understand like, why I was even at school, I wanted to go home and help help my mom. And that’s, you know, when my dad died, and I know I already mentioned it, but so much of my personal focus and and life became around, how can I help my mom, I really was not thinking so much about like, what does Danny need? What? What do I need to heal to move forward? To keep going in my life, it became how can I sort of not necessarily replace my dad, but help as if my dad was still alive. That was really where I went. And when my mom died? I would say almost in like five years, it was truly the first time where I took a step back and started thinking about like, what does Danny need? What does Danny want? What do I want my life to look like? And that’s where I started to really go on this, like, very deep introspective journey of how do I become more intentional and what what do I how do I make sense of what life is and all all those questions that you know, are sort of the every journey we’re all on trying to think through as as we build our own lives. But yeah, it was it was really hard to find that community early on. And after my dad died, that I was I really feel extremely lucky and fortunate that I did find community very quickly by volunteering at experience camps, and I ended up I remember the first time I spoke about my dad, it was I was terrified. It was extremely challenging. I would break down and in tears and you know, I couldn’t even it was very hard and challenging to just say my dad died. You know, it’s like almost funny looking. I’ve said it now so many times that it’s it’s just like, good more. Good morning. Can I have a coffee? You know, it’s almost like the same thing. It’s very matter of fact at this point, but I remember that being extremely difficult and even in like a small setting, even with my closest friends. Even with family, I’d say actually with family there’s there’s a You know, families are different. But I would say for the most part, like, my family and I, we acknowledge, and we celebrate, like death of bursaries or things like that, and we say we missed the person, but we’re never going beyond sort of that surface level. And you know, even in many ways with friends, it’s it’s rare at this point that we do that. But there are moments or times like add experience camps, where going there is very acceptable in the norm and things of that nature. So I ended up finding community in that and ended up sort of throwing myself at other opportunities, I don’t know if it’s still around. But there, there’s was an organization, that dinner party, which did grief parties for people who have experienced significant loss, and I went to a bunch of those and met a bunch of people who, you know, had lived through a significant loss. And, you know, it was actually funny, I went to that only a few times, but I remember going to this dinner party. And I was definitely I think the youngest, both times, I was the youngest person there. And this was only after my dad had passed. And I had already from from volunteering and experience kampsen, from sharing my own story, and from helping others who have lived through loss at this dinner party, I must have been maybe 22 years old, 23 years old, and everyone else, maybe it was like late 20s, early 30s. And a lot of people, there was the first time sharing their story. And that’s the point is you everyone brings something to the dinner party, and you sit down and you talk about your people, or the person that has died. And you’ve sort of built community through through this network. And I remember, like, really, there were so many people there who was the first time they were sharing their story. And my friend and I went with a friend from experience camps, we almost ended up like leading the dinner party and getting the conversation going and trying to make it an environment in which people felt like comfortable to sort of go there. But it is it is very difficult, I think to to find that community. But I really do feel like there are a lot of organizations now that exist, if you if you seek them out, where you can find community and find people who are who have lived through something similar or going through something similar. I can’t really speak obviously as much to what it’s like being a child. But I can only imagine how difficult and challenging it is to lose someone significant when you’re so young, because it’s I think the processing, really understanding and comprehending is the challenge there. And I know so many people now who have who have lost someone very young, and you know, they deal with all sorts of different not necessarily problems, but just their their own grief journey is very different, where maybe they don’t have memories with the person. And they have different challenges as it relates to how they grieve for their grief journey, as opposed to my own grief journey, where it’s like, I have so many memories with both my parents, but you know, they’re, they’re not here, etc. So it’s very different. Obviously.
Victoria Volk 38:00
When this happened to you, at a really, I’ll say ripe age, like you’re just on the cusp of going on your own into adulthood. And and I know that, like you kind of described just the college years, it can be a crazy time and things. Did you find yourself going down this slippery slope? Were you using alcohol? Were you using other things to soothe you during those years?
Dan Goldberg 38:27
Yeah, I wouldn’t say that. I was definitely drinking but I would say more like any other college student who’s excited or living for the party. I was not I was not like drinking necessarily. I wasn’t drinking though like to numb the pain that I was in, I would say the college was sort of just like my senior year of college was a tremendous block sort of, of me getting to where I wanted to get to go, which was I want to get out of here. I want to get this degree because that’s what my dad wanted. For me. And I want to I want to get out of here so I can help take care of my mom. But I really didn’t use I wasn’t using like drugs or alcohol as a way to numb numb the pain I was in. I started seeing a therapist for the first time my life like right, immediately after my dad died. And I think that that really helped. I did I did. You know I think grief manifests itself in different ways. And I think physical is one of the many ways that we experience grief and early on like when I was 21 right after my dad died. I couldn’t again like I had I really had to and I just spent I know. We’re talking now for like 45 minutes about grief and I feel now I’m at a point where I really can discuss in depth my emotions, how I feel what I felt, but right after my dad died, I definitely couldn’t. I couldn’t. I still was having a difficult time comprehending I remember the night he died going in the car with my mom, my uncle and They were driving home. And so I remember driving home and just like, again, my hands, my head was in my hands. And I just, I remember both when my mom and dad died, like, specifically, I guess when my dad died, just like, sort of just sitting there shaking my head, trying to really comprehend, you know, what, what had just taken place. So my dad, like thinking, so my dad’s gone now forever, how, why? It’s so unfair, I’m so angry, but I couldn’t even like, you know, I couldn’t really put like, for example, I’m so angry, I couldn’t put the emotion onto the feeling. And for me, when my dad died, the grief really manifested in physical ways. So like, my dad had all this hip pain. And then I was like, I think I have all this hip pain too. And I would find myself really in more of like a panic state. And I remember having a lot of panic attacks and being absolutely terrified that I was also going to die. And, and all that was because I, I really had an inability to, to feel like I had, and it wasn’t like I was I was numb to the loss it was that I didn’t know how to physically, emotionally express what I was feeling. And I would say, really, that’s, that’s what, for me, going to therapy like, right away helped with. And I think, in many ways, like finding community, going to go into the third therapy, which I’m still doing now like, that’s enabled me to be able to openly share and discuss and actually feel these feelings were in the past, especially at 20, where I really couldn’t, I really, like I really had such an inability. And it’s almost funny looking back now, because who I was eight years ago is so tremendously different from who I am now. But it’s definitely funny. I think as a whole, like society is definitely getting better with discussing grief and having it be a part of a normal, a normal part of a conversation. It’s not so taboo anymore. But you know, thanks to shows like yours and the work that a lot of people are doing in this space. But I definitely think it’s still a very uncomfortable one where people don’t know what to say, people don’t know how to support the people that are going through it. I do think like, when you’re so young, it’s very difficult for even you, yourself to, to like self advocate for yourself and to understand and that that was really where I struggled after my dad died, and especially being in that college environment. Like, I wasn’t sitting down with a friend over lunch discussing that my dad just died. And I want to, I just need someone to listen, or I want to share some things and I’m feeling you know, like, I wasn’t at a point where I could could do those things.
Victoria Volk 42:47
Because you probably didn’t feel safe to.
Dan Goldberg 42:49
Yeah, I’d say that. And I really think I had like a knee didn’t have the language. Yeah, you know, and it’s, it’s,
Dan Goldberg 42:57
I don’t know if it’s necessarily a gender thing, but I think also, it is challenging for like, to put the emotion to the feeling, right. Like I actually do feel angry right now or actually do feel sad right now. And, yeah.
Victoria Volk 43:10
And it’s not bad. It’s just and you can feel joy and you can feel anger. Yeah, absolutely the same. Within the same minute, right. Yeah. So I’m curious too. Are you an only child?
Dan Goldberg 43:24
I have two older sisters as well.
Victoria Volk 43:26
Okay, I mean, have you been through the years like with those with the loss of the parents has that in I mean, I don’t know if you’re okay, sharing, but has that brought you closer together?
Dan Goldberg 43:38
Yeah. So my, my family is like, we’re very close. My sisters live. Like only like, 40 blocks away from me and Manhattan. So we grew up and like I said, like, when we grew up, we, my family knew no, we didn’t know like sadness, really, as a family. Like, we only knew happiness. And, you know, I feel so fortunate, grateful lucky, like, blessed that that was that that was how we grew up. And that was, that was all we we knew, like how, how freakin lucky were we? And I would say we really even became closer after my, my dad had passed, and just like wanting to be there for one another. And, you know, I know that you know, we’re very lucky to that that is sort of where we all went to and after my mom passed that that stayed the course and you know, I think we all want to be there for an in each other’s lives. And obviously, we can’t fill fill the void and not having our parents be here but at least be there as as much as possible. And I really I feel so this this is this definitely isn’t something that I’ve openly voiced before, but I actually really feel so grateful for my like, Send a family, my cousins, my aunts and uncles, I think about that a lot. After my mom had died, you know, after my dad had died, my mom’s still there. So she’s sort of like the glue that kept everyone together. And after my mom died, my family like my aunt’s my uncle’s, my cousins have stepped up big in every which way, in every which way imaginable. Like, my uncles that live across the world will fly in one of my uncle’s is coming here in a couple of weeks. And to see us to be there for us to be there with us. One of my both my sisters recently had baby, their first baby wants to start identical twins, so she had babies, but you know, my, my, my family stepped up big. And I’m really so like, moved and grateful that that is what they did. Because, you know, when you wake up in the morning, no one forces any any of us to do anything. And they’ve all consciously made a decision, an effort, and a choice that, you know, I’m going to step up big and, and be there despite my sister, right, their sister or their brother not being here, I recognize that I’m like, so freaking lucky that that is the situation. And that that is how things are in our life. And yeah, it’s like, honestly, I sometimes have to like, pinch myself, because I’m like, Wow, I’m lucky. I’m lucky in this situation, because I do know that, you know, after you live through significant loss, families, it’s very easy for families to be torn apart from lack of communication from high emotions from for all for all different reasons. And I think that I don’t, I don’t think that in and just in any family, you know, the, that the uncle or the aunt steps up big and he’s like, I’m gonna be there when you have your first kid or I’m gonna be there when you go through that milestone in your life. And I really feel like, yeah, just I know how lucky I am to have to have that.
Victoria Volk 47:03
Yes, you are. Yeah, that wasn’t my experience. So yeah, it is, it makes a huge impact. And so thank you for bringing that up. Because anyone listening to this, if they’ve lost a sibling who has children, to keep that in mind, the impact that they still can have, in that person’s life, the child’s life, their niece or nephews life?
Dan Goldberg 47:27
Yeah, I’m getting chills here thinking about it. But you know, I think I think also, I think about it, sometimes it’s definitely been like a thought that’s popped into my mind, where now with my sisters, what if that they have kids, you know, it’s like, if God forbid, something happened to them, and they, and they passed, you know, I see that you can now step up big, and I see the impact that it can have. And, and, you know, I think about it as it relates to other people, right, it hasn’t really been my my personal situation, but I’ve definitely had my own challenges or friction points within my own family, with navigating things with my sisters and things like that. And that will have to be fun for another podcast, you know, because it’s, it’s difficult when you when you have no parent, to be in the situation and to help resolve things and say, Hey, this is a dumb argument, let’s move forward, let’s move beyond this. Hug it out, your siblings, you’d love each other, let’s let’s move forward. So you know, there’s, there’s absolutely challenges. Where the, because we don’t have any parent that’s alive to to be to be the parent, right? There’s no one to say, let’s just move forward from here. So I do think you know, that communication after you, you live through someone, significant loss is so important. And also, you know, that because I know that they happen, that you know, these, these the arguments that you could have with a sibling, a parent after you live through something, after you live through significant loss. It’s just like, you know, that’s life and those things will happen. It’s inevitable. But the communication, having a good line of communication is just so important. Because in the end, like, there’s no there’s no argument, there’s no friction point, that’s, that’s worth it. Because, you know, we’re all we’re all going to die eventually. And I think that having being able to navigate you know, those difficult conversations after or just those friction points is so important because in the end, I really believe that it’s, it’s more worthwhile to be there for each other than have some argument calls from whatever it may be, but as a result of your loss or grief and to be able to sort of move forward and whether you know, I’m speaking very broadly here but whether there be resolve insight, but be able to just accept the differences and move forward and still be there for that person. Regardless if you don’t see eye to eye and things like that because that’s what’s so important after you live after you lose someone to You to be there for the people that you love and be able to support them and, and move forward with those people.
Victoria Volk 50:05
Well, and the key thing to remember is that everybody lost. And everybody had their own unique individual relationship to with that person. And so yeah, bring their own personal pain and their own personal perspective.
Dan Goldberg 50:21
And with friends as well, you know, because I think, I think sometimes with friends, it’s like it’s not looked as the same, but I think it’s a little bit like discredited where sometimes people don’t put as much weight on it, like, oh, you lost, you lost your friend, you know, but that person might have such an that person might have had such an impact. This this woman that I was close with, while I was in college, she had cancer, but she didn’t really let anyone know. And I was on Facebook, well, like this is last year scrolling and I found out she had passed away. And I was really close with her. I actually, she was an older woman. Her name was Barbara and she lost her dad growing up young. And she ended up her husband ended up passing on earlier early in life. And I went to Syracuse and she was head of like alumni relations. And she was she was an older woman, I want to say maybe late 60s, early 70s, I ended up telling her all about experience camps after my dad died. She really like was there for me while I was in school. And I had this very unique special relationship with this woman. And I ended up bring her to, to experience hands on like, You got to come you got to come and she actually, one year, she just came to like, see what was going on. In the following year, she ended up volunteering, and she was like an out of bunk, cabin counselor, but she got the full experience. And she was able to help the kids who who were there. And we had a special relationship. And I ended up finding very unexpectedly that she had passed. And it it really it really like it was like sort of like a someone hit me in the back of the head with a hammer I wasn’t expecting it, I sort of we would we she would let me know if she was in New York City. And we try to find time for like, grab a coffee or something like that. But we weren’t talking as much as we used to just because life right? And not not to say that, you know, I’m experiencing, I was I was I was grieving again. And I was experiencing this loss in that moment. And for the days to come, maybe the weeks come I felt it. And I was I was feeling the pain associated that I had lost this person and we sort of lost touch. And I would have loved to check in more. And I wish I had said hey, how you doing more often and things like that. So you know, it’s like, I definitely think that the grief is early like grief with friend sometimes is discredited, or there’s not as much weight on it. But that’s, you know, there’s there’s loss and grief in so many ways, obviously outside of just physically, the death of someone. But you know, I think that that’s something that people need to I hope people can understand and be there for people who have lost a friend because they have, like you said, their own their own experience with those people as well.
Victoria Volk 52:58
Well, and we all have like our person, right? Or maybe our group of people who are in our inner circle who know our dreams who support our dreams. And those are important people in our lives. And so to your point, well, it’s just a friend, you have plenty of friends, you know, people can say sensitive things without really understanding what your relationship was 100% I’m interested in learning now, how all of these experiences has shifted your perspective and how you live your life now.
Dan Goldberg 53:33
Yeah. So I would say that. I feel like we definitely got into it over the last hour around how I evolved and how my life evolved. After from when my dad died when my mom ended up ultimately dying. And I know I already touched upon it, but my mom’s eulogy, I gave this whole talk around, you know, sort of finding your glory, finding the glory in life and not focusing on the Y but focusing on the what, what, what are you going to do now as a result of the circumstances that that you’re in. And I would say in many ways, that is the guiding light, it’s sort of is the guiding principle in my own life. I wake up every single day, and I think about knowing that I too am going to die. How do I want to spend the limited time that I’m given on this earth? And I focus on mapping my life towards those things, to doing those things to prioritizing those things. And it’s very interesting how we actually started with the beginning of the conversation talking about my aunt, and talking about like the how when your child when they’re young, it’s very hard to comprehend that and understand what death really is and that it’s that that the person is gone forever and that it’s it’s very hard to understand and comprehend all those things. Now, it’s like death is death is a piece of me and it’s that something that I carry with me every single day. Where I really focus on knowing like knowing that I too am going to die. How do I want to spend my time knowing that I am going to die, like, put my phone down and be present be in this moment, knowing that I am going to die, appreciate the fact that I just woke up and was had the ability to put my feet on the ground when I woke up and that I’m alive, healthy, and able and that I have opportunity in front of front of me knowing that I too, am going to die. Where do I want to spend my time? How do I want to focus my time and all that, and that that’s sort of like, like, death is sort of the guiding light in my life almost, you know, knowing knowing that death. And it’s not, it’s not in a panicky way. It’s not in an impatient way. Just that knowing that like, in a very real authentic way that death is a part of life. It’s sort of the thing that it is the thing that makes me question like, is the day I’m about to live, the day I actually want to live, and if not, I’m going to make the changes. But if it is then great. And that’s sort of how I now map my life. And the things I want to do, and the impact I want to have, and where I want to spend my my time professionally. Personally, how I want to impact the world, it’s all comes through the lens of just knowing that that death is a very real part of life.
Victoria Volk 56:30
So what do you look forward to?
Dan Goldberg 56:33
Everything, everything. I mean, I think, I think that it’s like, I look forward to everything, it’s like, I have this deep appreciation for the smallest things. And I have, I have like a little gratitude practice where I write in the journal every day, three things I’m grateful for. But I would say even like the, like, the first thing I write every single day is health, just like a given. But I really do like when I wake up in the morning, and I’m able to turn over and put my feet on the floor. I’m already like I’ve won today because I know that there are people who can’t do this, and I’m lucky and I’m blessed. And I’m, I’m fortunate that I’m that I am capable, and that I’m able to do this and I’m, I’m I’m I’m so lucky that I don’t have to think about my, my white blood cells, my red blood cells, I’m so lucky that I have. And you know, it goes beyond just cancer like Lucky. I’m so lucky that I don’t I have a safe place to sleep, I have food that I can that I can go and eat at any point I have safety, security, food, friends, family like life is life is good. I have I had a friend who lived through significant loss. And he wants told me you know that he believes that life is rigged in our favor. And it’s because of things just like the fact that we’re able to have this this podcast right now that we’re both over zoom, we’re not physically together, where we’re doing this from different parts of, of the country, and we’re able to sit here and we both live through significant loss, we both have lived through our own our own tragedies and, and but yet, we’re still here having this like beautiful conversation around the worst moments in our life and how they shaped our life and how they’ve shaped our perspective. And it’s because of moments like that, that, you know, that we are we are in many ways lucky, you know most besides the human race, I don’t think any any other animals capable of sitting here and actually understanding and comprehending and having this conversation this dialogue around the worst moments in our life and how they’ve shaped our perspective. And that in and of itself is like a beautiful thing. And I think that since he’s told me that it is something that I really do embrace and believe that life despite what I’ve lived through the fact that I’m still here right now having in this moment is all it is like enough and it’s that and it and it’s moments like these where I realized that life truly is rigged in my favor and that there is so much to be grateful for and that there is so much to live for. And as my mom put it there’s so there’s plenty of glory and that doesn’t mean you know that I’m walking around sitting here like all sunshine and butterflies and life’s perfect Whoo. It’s you know, there’s there’s plenty of hardship and there will be more hardship i remember turning my mom when when we when she moved to hospice care of telling her like, you know, life is at least now I this was the lowest low I’ll never hit a lower low again. And she told me don’t be so naive. There will be there’ll be worse things in our life that will that can and will happen. And you know, I think that true and it’s funny too. Now looking back even just from saying that, how different that is from when my dad first tried to shelter me from the painful realities of life. But, you know, it’s like, there’s so much truth to that, just because you’ve lived through one loss just because you’ve had heartbreak, whatever your losses, whether it be a job or relationship, there will be worse things in our life that will ultimately come. And that’s just a part of that’s a part of living. But there is plenty of there’s there’s so many beautiful things and so much to wake up and live for. And I think that death has given me this perspective that there will always be bad. It’s inevitable, but there’s equally so much good, and so much, so much great to live for. And that sort of I guess where that is, that is where I, I sit, I guess now, looking back on what I’ve lived through, and how I how I live my life today,
Victoria Volk 1:00:52
That can be a really depressing thought, you know, when you think of people, I just want to elaborate on this. Because when people have experienced something that they think is the worst, right, the worst has already happened. And can get really wrapped up in that emotion of that thinking the worst has already happened. And they can get very depressed and down and things like that. But to have the awareness and the cognitive understanding that, well, gee, there really could be other worse things that can happen to me. It’s like, well, what’s the point of living? Right? But the importance of that. And I think the distinction of your story is that it’s who you surround yourself with. And that is why it’s so important to find community that you don’t grieve alone, so that when those future things happen and occur, you have a foundation of support. And you sought out therapy, which is which is amazing for a 20 something to choose that for himself and a young male, right. So it’s, it’s the action that you’ve taken, and the love that you’ve allowed yourself to receive, that will help you face those future challenges.
Dan Goldberg 1:02:07
Yeah, I really, you know, I said it before, like my, my extended family, but certainly without a doubt the, the community that I’ve found and surrounded myself with is I wouldn’t be where I am today with without, without those people and without that community. I definitely, I definitely would say though, I could see how it could be depressing, you know, but it is it is very, and it’s not to say that there’s like a right way or a wrong way. I think with grief loss can’t like can’t like any of this stuff. You know, it’s like it’s messy. Yeah, it’s very messy. And I think that there’s no right or wrong way. If if if when someone you love is diagnosed with cancer, if you want to turn to, to God and religion great, like you need to find what will what will give you the support that you need to sort of support those people and move forward. And there’s like I said, there’s no right or wrong way. But I do think that there is Yeah, I just think like I rather live in grounded in reality, knowing that life Life is messy. Right? There’s no, there’s no guarantee that tomorrow will come for any of us. And I think I think that and I know we didn’t really touch upon it on this episode, but like, I think the intentionality and intentional with your life is so important. And I think that that’s one of like the greatest gifts that grief has shown me or given me. I think, again, like it’s not like I’m over here thinking, life’s sunshine and butterflies and everything is amazing. But I’m also not down here where it’s like, this sucks, and there’s no purpose and it’s, it’s that I’m very intentional with how and where I choose to spend my time now as a result, knowing that, you know, tomorrow’s not guaranteed I think about it with like, even my my dog or my, my wife, it’s like, put the phone down and go out on go out on a date. And just be with one another because we have this moment here right now. And we should embrace this moment because it’s it is just the reality that we don’t know that there is no guarantee that that moment will be available again next week or tomorrow. And you know, that’s that’s why it’s very frustrating when you see people who are so focused on you know, maybe stuck stuck in their phone just texting away, and they’re not physically wherever they wherever they are, whether it be a wedding or a hike or with friends. Or if you’re getting like stuck on focused on little things in life that don’t really have grand that don’t have like significant impact in your life and you’re so focused on the stupid the stupid thing. It’s like, you know, we don’t know that tomorrow is a guarantee. So just be physically be be be here, be here right now. And embrace them embrace this moment and You know, going going back to just be be intentional. That’s like the one thing that I try to encourage anyone and everyone, if you’re, wherever you are in your life, I really don’t believe that, like, age has an impact with intentionality. I think if you’re in your early 20s, try to try to develop a way to become intentional with how and where you want to spend your time. If you’re in your early 50s Like, and you’ve been living your life a certain way for the last the last 50 years, you if you want to make changes, because you now recognize something, you know, be the intentionality I think is so important in in our own lives. And I think that that’s, that’s like the, that is one of the biggest things that grief has has shown me.
Victoria Volk 1:05:38
I love that. There’s a quote I actually just wrote came across it yesterday, and I wrote it down, it says, if it’s out of your hands, it deserves freedom from your mind to like that. I even knew Ruth said that. And that’s just like, that’s with worry, that’s with, you know, anything that’s out of our hands, right? Like, what will happen tomorrow is out of our hands. It’s what’s going to happen is going to happen. And but we what we have control over is the actions we take. Right? Yeah, intention we bring to each day. Intention has come up a lot for me lately.
Dan Goldberg 1:06:18
Yeah, like intention where? I, you know, I, I’m curious if you see this or from like, I think a lot of people especially, I think both young and old, I don’t think it really skews one way or another. I think older people, I think young people aren’t intentional. I think prior to my dad dying, I certainly wasn’t, you know, like, the most important thing in my life prior to my dad dying, was going to that college party getting drunk and having a good time. I had zero intention in my life. After my dad died. It sort of opened things up. When my mom died. I became Mr. intention that was really like my focus. And I think if you’re young, and you start to focus on like, how do I want to spend my time on this earth, it can sort of push you in a direction because I think when you’re young, you’re told typically, like, You should do this, or you have a teacher, a professor, a friend, a family, friend, a parent tell you, I did this. So you should do that. So there’s, there’s not really this intentionality when you’re young, because you’re just sort of following what you’re told. And I think as you get older, you have your sort of mindset set up that this is how life works. This is, this is what my life looks like, I’ve done this for the last this all you know, I’ve done this for the last two decades. I’m not going to change my life now. And I think as you get older, you don’t necessarily have that intention as well, because you get set in your own ways. So I think like everyone can do a better job at being more intentional. And, again, for me, it’s like, that was the gift that grief gave me this understanding of intentionality, and how it can shape my life differently now as a result, but I think everyone can, can do a better job with being more intentional.
Victoria Volk 1:07:51
I almost think intention might be the antidote for fear. Because how many of us, us, I’m in my 40s, you know, 40s 50s and older, don’t make those changes, or are afraid to make those changes, right. I think fear is a huge driver for a lot of people. And so would you rather have fear be your driver? Or would you rather have intention? Be Your driver?
Dan Goldberg 1:08:20
Yeah it isn’t. You know, that. The other thing? That’s funny, is that just just about fear specifically about fear, it’s like, then you think about it through the lens of of grief and loss. You know, it’s like.
Victoria Volk 1:08:32
End of dying, right?
Dan Goldberg 1:08:33
Yeah. So you know, that’s, that’s where I go back to where it’s like, well, knowing that I could die, what do I really have to lose? What am I really scared of? Is there really, should I really be fearful right now? Or is it or, and, you know, it’s, it’s like, I don’t think there are things that are scary, and you, you shouldn’t be scared. If you want to make some drastic change in life. It might be it would be weird if you weren’t. But you you need to be able to get to a point where I’m scared, but I’m going to do it anyways. So I think that’s, you know, it’s like, those are the things those are the little, the light, I think that grief sort of gives you.
Victoria Volk 1:09:07
And if you change your intention to getting out of your comfort zone, I need to stretch myself, I need to expand like this is going to stretch me this is going to grow me this is going to elevate me in some way. Right? We don’t grow. And if we stay in our comfort zone 100% I think that’s what grief really does is it it just it blows us up. It just blows up our world in our life. And it’s just a matter of gathering up the pieces and putting it back together but with intention of what we want that to look like going forward.
Dan Goldberg 1:09:42
100% agreed.
Victoria Volk 1:09:44
Yeah. Is there anything else you’d like to share?
Dan Goldberg 1:09:48
No, I think I really enjoyed this conversation. And I think we covered we covered a lot over the last hour plus and yeah, any other questions you have for me?
Victoria Volk 1:09:58
Where can people find you if they’d like to connect with you and listen to your podcast.
Dan Goldberg 1:10:02
Yeah, I am on Instagram @danlevgoldberg, D A N L E V Goldberg, G O L D B E R G. And you can connect with me at bitsofgold.com.
Victoria Volk 1:10:02
And I’ll put the links.
Dan Goldberg 1:10:19
Awesome, and I’m on LinkedIn as well. I think it’s just, I think, I think I’m just Daniel Goldberg on LinkedIn.
Victoria Volk 1:10:24
I’ll put the link in the show notes.
Dan Goldberg 1:10:27
Okay, cool.
Victoria Volk 1:10:28
All that you mentioned. And I thank you so much for being here and for living with intention and bringing that intention to the work that you’re doing, at the camps to wherever life takes you moving forward. So,
Dan Goldberg 1:10:44
Appreciate that.
Dan Goldberg 1:10:46
And remember, when you unleash your heart, you unleash your life. Much love.
Death/Dying, Educational, Grieving Voices Guest, Grieving Voices Podcast, Pespective, Podcast |
Jen Kidwell | Death, Legacy, and the Law
SHOW NOTES SUMMARY:
What do you want to happen if you are incapacitated while on your deathbed or after you die? If you don’t have a will, that decision may be left up to the state.
These are big questions that often don’t have answers for those who are left behind. In the most emotional moments, the family is left to make decisions that weren’t theirs. Each of us has a responsibility, not only to ourselves but those who would be left behind, to address our matters before those things are left to someone else to decide for us.
With a lack of preparation, this is the position we put our loved ones in, and it happens because we have an aversion to discussing these sensitive issues with those we love.
We don’t like to think about the end of our lives. However, considering we may not know when that is, preparation negates some of the pain for those left behind in the wake of loss. For those who may be struggling with terminal illness/diagnosis, it’s imperative to address as many of the topics as possible that Jen and I discuss in this episode.
As a lawyer and seminary-trained pastor-type who specializes in creating wills and trusts for families, this is one conversation everyone needs to hear. Jen creates comprehensive plans through her values-based approach and helps clients reflect on their legacies and relationships.
In this episode, you will learn the two mistakes most people make regarding estate planning and much more!
RESOURCES:
CONNECT:
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If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.
Are you enjoying the podcast? Check out my bi-weekly newsletter, The Unleashed Letters.
CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. Today, my guest is Jen Kidwell. She is a lawyer and seminary trained pastor type who specializes in creating Wills and Trusts for families. She uses a value based approach to create comprehensive plans and helps clients reflect on their legacies, and their most important relationships. Estate planning is more than a series of decisions. It’s an opportunity to engage with big questions about what a good life and a good death look like for you. Jen loves to be invited into these conversations with their clients and finds her work fulfilling and meaningful. And it’s very much needed. And I as an end of life doula, although I’m not working in that capacity, yet, I’m still trying to figure out what that’s going to look like for me. But education, I know is a huge piece of it, because so many people don’t realize that it is possible to have a good death and that and the all the stuff that goes into it that we’ve kind of left until we have to face it. When we’re emotional noser. That’s really not the best time to make those important decisions. Would you agree?
Jen Kidwell 1:14
Oh, absolutely. Yeah, I mean, the these decisions are always going to have emotional components. Right. But when you’re approaching them more on your terms, and you have a sense of agency around it, and you’re not also trying to feel all of these other things, I think people really wouldn’t when they have space to do it, I think is really the it’s really the best time.
Victoria Volk 1:34
Yeah, so I’m really excited to dive deep into this conversation, of course, we’re going to talk about your losses, and what has kind of led to this work that you’re doing. And so let’s start there, grief touches every single human being whether you’re LeBron James, or Jen Kidwell. Or, you know, it doesn’t matter who you are, it touches everyone. And so how has grief touched your life?
Jen Kidwell 1:59
Well, I mean, I think in a lot, I mean, in a lot of the ways that that that people maybe are introduced to it at first i The first kind of loss, I remember was my grandfather back when I was in high school. And then my, my last remaining grandparent, my grandmother passed away this January, you know, experiencing these things is so different at different times in your life, especially after having had some, some training and some, you know, a lot more, a lot more life a lot more experience in these things. And so yeah, like lots of journeys. And I think grief also, I mean, the loss of people is obviously the primary place where people experience grief. But then there are other ways of, of, I don’t know, butting up against grief, or maybe journeying alongside grief at other times in our lives to write the loss of dreams, the loss of relationships, not to not because of a because of a death. And so I have become a lot more familiar with using grief language. And those experiences, which I held, I think really helps me to process and reflect on them. And gives me sort of a, you know, a box isn’t the right word, but a process maybe to to experiencing them instead of just, you know, Oh, these are hard emotions. And I don’t I don’t know, sort of what to do with them. So I think it’s, it’s touched me in lots of ways, the most recent loss of my, of my grandmother was, was was difficult, but also she’s almost 98. And her death was really very beautiful. And, and so that has been, I’ve learned a lot from that experience. And I think that’s something the way that she that she died is something I would aspire to, right. Like we were all able to be there we were singing hymns around her, we were, we were just able to surround her and remind her of who she is. She wasn’t conscious, but I like to think that maybe she could she could hear us or at least be aware of our presence. And we were carrying her into that space. And so while that was that was difficult. It was also it felt like the best way to love her in that moment. And I’m so glad we had the opportunity to do that.
Victoria Volk 4:03
Hearing is the last sentence to go. And so I’m curious, given your background, is there anyone else in your family that works in this type of arena? If not, did you find yourself resorting to these tools and this information and knowledge and bringing that to your family so that you could make that experience of family inclusive one?
Jen Kidwell 4:28
I’m the only person who has had some like, you know, training around these things, but my, my mom and her sister are close and my mom is kind of familiar in the in the medical field. And so I think we all sort of brought different things to that space, right? Like I we had to I got a call that she my grandmother was not was was dying and drove up to Boston, which is like an eight hour drive from from here. You know, packed my ukulele and my hymn books and other things and just was I was prepared to sort of occupy this space, however, it felt best for my, for my mom and her sister, and the rest of our family. And Gigi. So it was, it was nice to sort of to be there all together. And with each person sort of offering their own their own part, and, and it was, it was nice to, you know, after after my grandmother died to find some ritual and to offer some ritual, because that that transition, the the leaving, leaving the hospital afterwards was was really that was the hardest part, I think for me, because I would like to just keep caring for her right, like, I would like to be able to take care of, to take care of her to, to bury her not to have to turn her over to an institution, right, that was really hard for me kind of unexpected, that that was a kind of intense part of that process. But it was nice to be able to offer some ritual to kind of help with that with that process for others. So I definitely found some of that, that training to be helpful. And I hope it was, it was helpful for my family.
Victoria Volk 6:05
So given what you do for a living, is this something that your family has embraced for themselves and planning ahead, and, you know, I can see, as a daughter, you know, you would want to encourage your parents to make these decisions for themselves. And, you know, you’re kind of like, I know, for me personally, like, I’m, I’m like coaching my mom along like, hey, you know, do you really want to leave these decisions to us? You know, I don’t want to have to make this decision. You know, all of those things. Have you found? Like, is there? Can you go into that a little bit?
Jen Kidwell 6:39
Yeah I mean, it’s a process, right? Like, my, my parents are, they’re very, very responsible with all parts of their life, including their their financial life, they’re both in the have worked in pharmaceutical, healthcare related industries, and so are aware of, of many, many things. And so but there’s a lot of these conversations we haven’t had yet we are we we sometimes bring it up from time to time, but some things we just haven’t discussed, right. So I they have they have a well, I know, they have their advance directive planning and some of that that done, which is great, although we haven’t talked about it, so I’m not sure how done you can really, you can really call it and that’s one of the things I appreciate about this work is that, you know, I do the the legal documents, and then if if folks want to have a facilitated conversation between them and their designated healthcare agent, right, so that’s the person who would make healthcare decisions for them if they weren’t able to do so themselves. I’m I have some some training and how to facilitate those conversations. And and I’m happy to do that. But I think these documents are I when I when I you know, give people their their final kind of signed and executed documents, I always remind them that like, Okay, so now you have a checklist, right? These, each one of these documents is sort of now its own checklist for you. So you have to decide what you what you’re going to do with it. But I highly recommend you you sit down and have some some detailed conversations with the people that you’re giving, you’re giving these powers to and these responsibilities too. Because they’re these conversations now are gifts for the future, if they ever need to do that, right. Having somebody wonder what you would have wanted, when they’re faced with these, like really intense choices, is really hard and can really plague people I think for a long time, if they feel like they maybe didn’t make the right decision, or they still have doubts about it. And so offering that kind of clarity, you know, when people talk to me, they’re often very clear, oh, I want you know, a lot of people, a lot of people are, you know, I want I want the plug to be pulled like, as soon as the digit like, as soon as the doctors are clear that like there’s I’m not coming back, I’m done. We don’t want to waste financial resources, I don’t want to waste healthcare resources. This is the plan. And so they have strong feelings, many of them, not all of them. And, and so I always encourage them to speak very clearly and with detail with their with their agents. And so, you know, my you know, we haven’t had those conversations yet and my family, but we’re getting there, I think, and I know that my parents have done these these types of planning already. Oddly enough, my grandmother had, had not updated her her will from before I was born. So it was done in the early 80s. And many of the people in decision making roles in her estate planning had passed away. In fact, all of the people I think she had named had passed away. And she had also like expressed that she had wanted certain things changed in her like financial documents that she I guess was under the impression that they had been changed, but really they had not and so her estate is not particularly complicated. But there are these sort of complicated factors that have come into play because I don’t think she got great advice, you know, over over time and wasn’t kind of maintaining her plan the way That would have been ideal. So it’s all it’s all fine, or at least working through it. But it’s just like a little ironic that I am. I wish, I wish I had been invited into some of those conversations a little earlier, I guess I might have been able to help.
Victoria Volk 10:13
Well, that’s a great tip. It’s a working document, right, until the day you die. It’s a working document. So if anything changes, you know, it’s best to address those changes in a timely manner. Because we have no guarantees, right?
Jen Kidwell 10:26
Yeah, that’s right. And so I always, I tell folks that they’re, they enter into a maintenance phase. And so that is, and you know, we depending on their, on their goals, and their family, we try to build a lot of flexibility into their plans, so that, you know, if they don’t get around to updating them, that’s, that’s not there, but still will still be options for the decision makers or, or the people who are managing the estate. But But yes, I try very much just like this is a partially checked off item on your to do list, I’m a big fan of checklists. And, you know, and so I send emails, you know, after you know, every every year, to remind folks to update things, or to reach out if they need me to talk about something or have additional questions. It’s also true that the law changes a lot, a lot, actually, in this area, some big changes recently, have really, if people did their planning prior to 2020, some, some big changes have influenced how that that planning may end up playing out. And so that’s another reason why it’s just something to, to maintain. So, you know, once a year to like, spend a little spend a little brainpower thinking about it, and and check in.
Victoria Volk 11:39
I have a confession a long time ago, we had gotten like this booklet, or like a, like a full actually, I ordered it, I ordered this folder that had like all these documents in it like stuff, you know, basically it would be in my written words, what I wanted, and you know, different things like to prepare family and my wishes and things and even like financial stuff, right? Like the account numbers, and just all this stuff, and especially like having a business, oh my gosh, I can’t even imagine like my and my husband hates like, he kind of loads technology, like he hates computers he hates? Yeah. So he would be in total struggle bus. And so that is something really truly that I need to make easier for him. You know, I do have like a password book, you know, so that’s all in one place. You know, so that makes it easy. But yeah, so what are some quick off the cuff tips like that maybe people aren’t thinking about that they maybe should prepare for their family for and, you know.
Jen Kidwell 12:50
Yeah, I mean, I think it’s, it’s so family specific. So that is, that’s one of the things I really enjoy about the kind of planning meetings that I do with people is, is really, that people, often when I do this process, and when other folks do this process as well, people will submit a worksheet that kind of lists lists, all all the stuff, right all of their, their financial life, their relationships, their physical assets, all of that. And, and that’s sort of the the first pass for our, our work together, kind of making sure that everything is taken care of, but Right, like if folks have oftentimes, like people who have young children think about life insurance, for you know, being able to care for their children, if they’re not here anymore, which is wonderful. But I think often as baby boomers age, there are more families that have minor children and also have parents living with them. And, you know, they got to think about what’s going to happen with their parents too. And so what that life insurance, maybe that maybe they need more life insurance, maybe they need to kind of figure out how to take care for the aging relatives, as well as the as the younger as the younger generation. I think there’s a lot of a lot of life happens online these days. And so you mentioned you have a password book, which is great. There are there’s software out there, you know, one one password and other kinds of things that some folks find helpful. One of the things that I think a lot of folks don’t don’t realize is that a lot of the accounts that you set up online like in social media, for example, those are not those accounts would then not be governed by a will so they are contracts that you are establishing between yourself and the you know, say Facebook for example. And so there’s in Facebook, there’s a way for you to go in and designate like a legacy person, you can sort of name someone who can have access to your account, you know, if you if you pass and and maybe like they can’t get into it otherwise and so sometimes these social media spaces will will have those kinds of options. Sometimes they won’t, and you might you know, that’s another password to make sure that’s in your it’s in your list if it’s an account that’s important or that you want to be maintained. cryptocurrency is like a bigger thing these days. Right. And like that’s, that’s also something that’s kind of hard to deal with in a will, because it’s governed by these by these contracts that you make with these, these companies that that run these kind of off the grid spaces. So that I was working with someone recently who just sort of like, for a hobby, you know, has some cryptocurrency and I was like, Okay, you we need to deal with that separately. That’s not like this is not in the same category as like a bank account. And she was like, oh, and it was a, you know, it was a new a new thing. So yeah, so a lot of those those kinds of things kind of come up. And depending on people’s businesses, or their or their hobbies, right, there might be other things. copyrights are a thing also to deal with, right? If you have a blog, then you own the copyrights to your blog? And like, do you want to do something with that? I mean, maybe not. Right? The answer might be no, but it’s a it’s a good conversation to have, because copyrights live out. They outlive people for a long time. And so sometimes there, there might be ways to monetize those copyrights for your descendants in the future. And so passing those passing those copyrights along is also something that, you know, people don’t necessarily think about these days, too. So there’s a ton of there’s a ton of stuff that can that can get wrapped up in these conversations.
Victoria Volk 16:11
And I just suddenly felt myself get very overwhelmed. I’m just, yeah, I, first of all, thank you for that tip, too. With the legacy account of Facebook, I had no idea at all because people put a lot of pictures on their personal accounts. And it’s like, well, maybe those are gone, you know, the person passes away. And then now my question too, is like with teenagers, you know, you can be a parent that outlives your child, and then they have all this stuff to write. And so I think it’s important for us, as a parent, me as a parent, I three teenagers to, like, how do you convince your kid? You know, I need your password? You know, maybe write it down somewhere that, you know, maybe I’ll find it? You know, I don’t know, like, how do you any tips on that?
Jen Kidwell 16:59
Yeah, like, so that, and that’s going to be different for everyone. Right? Yeah. When I do planning for folks, I give people a big binder, it has tabs and has all the things in there spaces for like other documents, or, and I encourage people to write letters. And so and to keep the letters in, in the, in the binder. So maybe the letter will letters will say like this is where XYZ is, this is where I didn’t want to keep the passwords with everything else, because that didn’t feel safe. So but I’m keeping them in this other place. Or like this is the name of a file on my computer where you can find this kind of thing. And so having one place one, one binder to kind of rule them all is is something I recommend, but the binder itself doesn’t have to have everything in it, it just has to point and point the right people to kind of where where they need to be. I do also, you know, when I do work with folks, I give them emergency cards, just like little business card size size guys, that, you know, they can do what they want with them depending on their life. And some people will take them to car seats, some people keep them in their wallets, some people like put them on their fridge. And then that is a usually I focus on decision makers and if there are minor children of emergency caretakers for minor children, but there’s no reason you couldn’t also include like the binder is d if you know if that feels like something that’s that’s useful to you so so yeah, like every family every person is going to it’s going to feel differently about that because they may may have different levels of trust for the people in their life other people who are likely to be in their home, but it’s it’s always a good thing to work I try to work work through that with each of each of my clients to come up with a plan that fits for them. And that works for their for their lives.
Victoria Volk 18:47
I just thought of a tip for myself and maybe even for anyone listening you know because I’m big into technology and stuff and I’m thinking like if I have a binder and my house burns down unless that’s in a safe that binders like poof right? I’m sure you have a backup personally Yeah, yeah, that information Yeah. But I’m just thinking for people who do this on their own right like I do have documents but they all filled out no, that’s my confession but to have an encrypted file on your computer or on your computer and a USB you know or something that then that USB is maybe with a family member or maybe if that’s in the safe you know that’s a little bit easier. Maybe it’s in the glove box of your vehicle right right.
Jen Kidwell 19:32
Yeah. That’s like access to a secure cloud storage space right that’s another.
Victoria Volk 19:38
Yeah or safety deposit box at the bank right that’s pretty secure spot.
Jen Kidwell 19:42
Yeah. So and you know, they make like the fireproof boxes or you know, some other some other things that that I know some people some people use as well. So So yeah, there are having in promote for many of these documents the well it depends but for like for a will like the original there. Very important. But if you have a copy and the family doesn’t disagree, right, depending on your state, that still might be enough. But but for other documents, like a health care directive, or maybe even a financial power of attorney, depending on the terms, a copy would, would work. So it again, it depends on the state. And it depends on the what the documents themselves say. But, but yeah, so those having those, those backups in other places can definitely help you out, depending on what the needs are.
Victoria Volk 20:27
You know, in my mind, I think of having all of this stuff prepared and ready and all the personal decisions made for you know, for your family members, like for yourself, but for them, it really can help negate any bad blood that can happen, right? The the inner fighting between the family of disagree, and like you mentioned, and I’m thinking though, like, there can still be that, even if you’ve done all this, have you seen that?
Jen Kidwell 20:58
I mean, I haven’t at well, there’s always stories, right? So there’s, there are, there are tons of stories that people share about families that just think that they’re their descendants, or that maybe their siblings will, will just get along, and it’ll be fine. And that, you know, say, you know, an elderly elderly relative moves in with their child and then puts their child’s name on their bank accounts or on these other, you know, financial institutions, financial accounts, and then when they pass, they expect that that child will evenly share all of those things with the other children like that. It doesn’t actually happen that often. And and it’s, it can be, it can be quite contentious, right? People go from from intending to share, to thinking I did, I did a lot of this work, right? Like I did all like I took care of mom, right? Like this is this should be mine. And then like it becomes it can get real messy. Yeah, I mean, I think even this is another place where writing letters can be really helpful because the the legal documents, you can put some of like the rationale right? A person creating these documents can put some of the rationale in there. But that’s not what they’re for. Right? These are decision documents. And so but the rationale, I think, is often things that really helps family Sorry, I got a little dark there for a second. So the the rationale are really things that that help families and help them understand why certain decisions were being made, or certain assets were kind of given to one, one person over another, or kind of how, however, whatever feels important to share can be shared. And I think that does help in in dealing with those kinds of disputes. Kind of nipping them before they they creep up.
Victoria Volk 22:47
Yeah, cuz I think for a lot of family members context, can change everything, you know, just having an understanding of why a certain decision is made. You know, we don’t know what we don’t know. And I think maybe that’s one tip, other Another tip I would think of, in how you compose a letter would be what is something they don’t know, but I feel is so important that they do know, that can change your perspective of this decision.
Jen Kidwell 23:18
Right, right. And I think always, and again, this makes like a lot of assumptions about the dynamics going on in any given family. But I think the things that we as humans want from our loved ones that pass on is like more conversation more assurances of love, more expressions of identity that help to ground us in who we are. And so these letters can serve for the to meet some of those needs to and so I think they can be super powerful. I also, you know, if people feel up to it, and are either have a buddy who is tech savvy, or maybe tech savvy themselves, the like audio audio recordings, or video recordings are, are maybe even more powerful than letters, because you know, it’s in, it’s in the person’s voice, they have the opportunity to kind of share stories in addition to like, you know, information about decisions, right. And so, then you can get more into these, like legacy interviews and those those kinds of things that are that are, you know, valuable in different ways, but in some similar ones too.
Victoria Volk 24:25
Yeah, there are actually there’s several apps out there now. I did a podcast episode, there’s one called after cloud. There’s been a couple others too, that I’ve come across, but yeah, where you can really it’s an archive of your family. You can put all kinds of things you legacy planning, like you had said, like what you Yeah, that’s a great tip, too. So what led you to doing this work?
Jen Kidwell 24:50
Any things right, the long and winding road? Um, I I’ve done a handful of things. You know, as you mentioned, I have a seminary degree and a law degree but She’s not like a super common combination. And so I have found ways to use each of them sort of separately in my in my career. But in thinking a lot about kind of the next step after my, my prior job was sort of feeling like I was ready to move on. I was thinking a lot about what I love the most about working with people. And I think that that is meaning, right helping people create and we I love the the metaphor of weaving, meaning helping people weave meaning in their lives. And so the law is not great. It’s a great tool for that. But it’s this is definitely a space where I feel like I’m meeting a legal need, right? Like, you know, I enjoy enjoys maybe a strong word, but like, I appreciate a well written statute. I appreciate, you know, legal research and sort of combing through all of these these things and finding answers to complex problems. So I enjoy that personally. But then the broader context of conversation around like, what is what is the meaning of your life? What is the meaning of your death? Like, how do you want to talk about that? And how do you want to integrate that into the decisions that you’re making? Right? Like, your will, is probably not going to go into details about how you reflect on that. But ultimately, it should be a reflection of all of work that you do, to come to answers around those questions. So yeah, so I think I think that’s one of the things and also, I just I think our culture has such as an aversion to thinking about deaths, I think the healthcare industry has an aversion to acknowledging that, like death is the outcome for everyone eventually. And so I appreciate to invite people into some of those conversations, you know, my prior job, I was working at a church, I worked with youth and young adults, and then regular adults to do to do a bunch of programming and why teenagers, my youth loved to talk about death, they had so many questions, they, you know, adolescence that lots is happening, a lot is happening in adolescents, especially, like now with, you know, more and more awareness of, of mental health and, you know, trying to learn skills to support their peers, or, you know, even strategies to help them themselves in these spaces. And so, we used to spend a ton of time talking about death, and I thought it was wonderful, the opportunity to reflect on these things with them, and to create a space where they felt safe doing that, in the context of a faith that they that they claimed that maybe can could help provide some light posts along the way as they as they figure these things out. And so, so all of those things kind of wove together. And, and led me to this space, which I I’m enjoying and finding, quite meaningful.
Victoria Volk 27:57
That’s wonderful. And I’m not surprised that the teenagers love to talk about death or enjoyed that. Because for like you said, the many of them don’t have a space where they can ask their questions. And because like you mentioned, as adults, we have an aversion to death and dying, and we don’t want to talk about it. And even just attending a funeral or someone in the family passing away, it brings up all types of stuff for ourselves, because we’re reminded of our own mortality. And that’s confronting for many people, like, Oh, I am going to die. And I don’t know when no, like, that’s, that’s life. Right? That is life. And so I think it is important that that is important work that you were doing, do you still kind of dabble in that from time to time?
Jen Kidwell 28:44
So um, I mean, the, I have young kids myself, and so the schedule and the balance seems to change week to week kind of what is possible. But I love you know, my, my younger, my younger one isn’t ready to have any of these conversations yet, but my six year old is like, right, they say that like three is the Europe death, right? When when kids are three, they are very curious, they have all the questions like this is the time, but she’s never grown out of that. And so we talk about death all the time. And after, after my grandmother died, we and we, we still talk about it a lot. And before her before her memorial service, we went to the cemetery. And we spent we walked around, we spent a lot of time kind of thinking and feeling and and talking about that space that she’d never, you know, she’d never been there before. And you know, at her service, we went up to the altar, and we sort of touched all the things and we like talked about how the the rituals that are that are part of this kind of help us to to make meaning out of what’s happening and to kind of understand what’s happening in some different ways. And so having those conversations with with her has been has been really wonderful and she has her own beautiful way of understanding these things and of kind of interpreting, interpreting all of it too. So I mean, the way that many kids Do so that’s been a gift of that experience as well the opportunity to reflect with her. So So yeah, I mean, the the balance, I think will continue to shift over time, but I certainly still still love my teenagers and, and then you know, I mean adult groups to churches and other kind of faith or kind of ethical spaces I think are, are also I mean, they’re sort of made for this, I think right there. They’re made, not just to like, I mean, I love the fellowship, I love the fellowship of these spaces to write, go have a potluck, like go plan a fundraiser, like go go do good work. But some of the good work is going to be kind of sitting with each other in these like big questions that are really scary that we’d rather maybe avoid.
Victoria Volk 30:43
So here’s another tip that I thought of as I was listening to your talk. So there is a for parents listening, there is a book called when children grieve. It is the foundation of a program, the Grief Recovery Institute has called when helping children with loss. And I think that that would be a great book for parents to read or caregivers or caretakers to read. And then an invitation to take the child like you said, like a great segue to like, Well, how do I start that conversation? Right? Is go to a cemetery. And ask your child, ask the child like, what are your questions like? What are you curious about? What are you wondering, What can I answer for you, especially a child who is grieving, it opens up that conversation, but you have to be open as a parent to, or as a caretaker, you have to be open to that conversation yourself as well. It’s so important, I cannot stress it enough how, as children, like by the age of three, you’ve learned 75 That’s why they say since probably age three, you’ve learned 75% of how you will cope with certain insert certain situations like how you will respond to certain situations. By 15, you’ve pretty much taken in everything in your environment that has taught you how to respond to life. So it’s so important that we start early, and we start young to have those conversations so that future generations aren’t as have don’t have that same aversion to death, right, that we do. Or that even probably even 20 somethings do.
Jen Kidwell 32:21
Yeah, yeah. I mean, the and I think one of the most important things about approaching these conversations, I mean, regardless of who you’re having them with is like a, an openness to the kind of mysteries, right like even as even people of faith who feel certainty around certain or you know, whoever whoever write for President faith or not, who feels kind of certainty about how how things work, during death or after death, I think creating space for that mystery, especially when when talking with with kids, and letting them kind of work their way through instead of kind of providing them with an endpoint and kind of shutting down some of that reasoning process. And some of that discovering for them is, is also is super important. So that they they come to a sense of ownership of it themselves. So I could talk about this all day. Yes, yeah.
Victoria Volk 33:17
Thank you for mentioning that. Because I actually mentioned that yesterday in another podcast conversation about how beliefs that are passed down can really pigeonhole us, you know, we get so set in our ways of, there’s no, that openness kind of goes away. Right to, you know, so I love that you’ve mentioned that, because I think it’s so important, like, just be open and curious to the questions and leave something to be discovered. You know, don’t answer you don’t have to have an answer for everything. I guess that’s that’s the lesson there.
Jen Kidwell 33:50
Right. Right. And there’s nothing wrong with coming to a different answer over time. Right. I think so often, is one of my favorite parts of leading isolate a confirmation class at my at my church, which, depending on people’s familiarity was sort of a an opportunity for middle schoolers to think about whether they wanted to sort of formally declare that they were wanting to continue in this tradition, opportunity one way or another. And so, but that we only talked about the questions, right, like we are embracing the questions. So we’re going to talk about some of the possible answers. And I would love to hear sort of how you’re navigating these things. Here are some of the the answers that your tradition has offered over time, because I don’t want you to be 40 and stuck with like the faith of a 12 year old, because that’s sort of what you think faith means. Right? Like, it has to be a certain way. Yeah. Right. And so that I used to have so much fun with them doing that. And, and I think my experience kind of working with them, led me to have different conversations with adults as well around sort of like where did you learn the answer to this question, like, Does it still feel true to you? If the answer is no, maybe that’s what Okay, and we can kind of we can work on on discovering something else within this big tradition that might feel like it better reflects your experience and the way that you know, you feel called to respond in any given situation. So, um, yes, the mystery is a good thing.
Victoria Volk 35:16
Yes, I’ve actually just had a post about that. Good Friday how, you know, I don’t care what you believe it’s, you know, maybe there are just some things that are a mystery. There’s, how can anyone on this physical plane possibly know for sure, right, impossible. Right, in a lot of ways, like, we don’t know everything, look at how much is undiscovered in the cosmos. And under the, in the ocean, right. And even our bodies, like what our physical bodies are capable of, like, I think we’re, we, we just don’t even have, we couldn’t even wrap our head around what we don’t know yet. About everything under the sun. So yeah, thank you for bringing that. Yeah, I think it adds just a childlike wonder to, to what what is possible at end of life. And I think that can bring people comfort too. And you know, there are people that really struggle with I think death and dying because of an indoctrination sometimes of you know, I did this thing, I’m, I’m guess I’m destined for hell, or, I’ve done this thing and all these good works. So I, I know, I’m going I know there’s a place for me in heaven. I think there is a mystery there that we just, we won’t know until we know, for ourselves. But anyway, I’m sure I could talk about that all day. So how long have you been doing this work like specifically helping people with estate planning.
Jen Kidwell 36:53
So this is like and again, like I’ve had sort of different points where I have I have done done this over time. But I’ve only been kind of really dedicated kind of 100% of my professional time to it for about a year and but again, like it’s it’s sort of has found me at different points along along the way but but yeah, so it’s it’s still a newer endeavor.
Victoria Volk 37:18
So have you personally gotten your ducks in a row for years?
Jen Kidwell 37:23
You’re still in process we’re still in process so like you mentioned the having a business makes it all makes things more complicated and so we have been kind of in in process of updating and trying to figure out the best the best way to move forward with the I have another kind of another a second business as well it’s sort of more of a hobby space. And you know, talking a lot with my spouse about the best you know, does he does he feel like he could sort of step in and do these things or like do I need to like a point unusual which is a lot of conversations to have like with uh, you know, other attorneys who might be willing to be like a triage person to come in and work with my work with my clients and you know, make sure that everything is wound up right so there’s there’s a lot that goes into it and so yeah, so we are we are still updating although we have a goal of the middle of next month as our as our like as our time so I think it will it will be wrapped up pretty soon and then you know if things need to change we will we will change them right just like just like with others and so as I am really enjoying my work now it’s it’s just me but I am I’m busy and so you know as I may grow my business may may grow and other other folks are involved like that that plan may may change over time. So we will we will maintain the plan just like I advise everyone else to do.
Victoria Volk 38:50
I could totally like I just had a bit I had a vision for you. Visit for you. I don’t know if you have an interest in like Do you have a brick and mortar?
Jen Kidwell 39:01
No not yet again with the small kids I am woman juggling and all of that most of the time but we hope to have one in the near future.
Victoria Volk 39:10
Yeah, yeah, I envisioned this brick and mortar have like this one stop shop for like, end of life. Planning like end of life. doulas, like all these resources like in this one place and,
Jen Kidwell 39:24
I have I get more pride I tried this with you but I have I have flirted with end of life doula training, often and and I’m in some of the Facebook spaces and sort of passively learning from all of the wisdom that is that is shared there. But that was that was one of the there are there’s at least one or two. There’s at least one end of life doula training program I can think of that was started by a woman who is an attorney and sort of backed into this work kind of going with Grace maybe is what it’s called. And she used to sort of do both of these things. And I think at this point has just shifted to the end of life doula And now she has training and she does all these other things. But yes, I have often often felt like, like a team of folks who were similarly minded, who understood the interplay between all of these things would be a valuable resource for for the world. And so we’ll see where that vision takes us.
Victoria Volk 40:20
As you’re talking to, I just, I was like, Oh, my God, because you were talking about like, your clients. And I’m like, Oh, my gosh, like, I hadn’t even thought about that. Like, if I’m in the middle of a grief program with one of my clients, like, who? Who do I refer? Like, who to where do they go, right? And that’s horrible. Because in the work that I do, it’s like, I can be in, like, I can be at session seven or eight. And then there’s 12 sessions, and it’s important, meaningful, deep work, and it’s like, hang them dry, like, oh, my gosh, I need to plan that stat. First of all, so thank you for that. And then also, I thought of to like caretakers. Like, if you are a parent, who’s caring for a parent, like that sandwich generation, if something happens to you, what happens to that parent? That’s huge. That’s a huge. Yeah, that sounds very overwhelming to me.
Jen Kidwell 41:17
I know, I know. I know. Yeah, it did. And it can be I think, but, but even sort of think thinking through what it could look like for your family, and, and what you know, what the aging parent wants, what their values and their priorities are. So that sandwich generation is, is in a, in a hard place, because they, they need to make sure everyone gets what they need, and they themselves are spread very thin. And I know that can be super hard. And so you know, seeking support, whether again, that’s in some sort of community space, or a faith space, or a like a space to like intentionally plan these kinds of things out rather, whether that’s with an attorney, or, or a financial adviser, or, you know, whoever that structure can maybe can maybe be helpful to organize all of these interests into something that makes sense.
Victoria Volk 42:09
I was gonna mention too, so I trained through in Elda, I N E LDA. So I can put that in the show notes if anyone listening has an interest in end of life type of work. But yeah, I highly recommend that organization. I can I share that with you. So of course you’re in Maryland. And so a lot of the things that you share kind of generalized in people have to look at their own state specific stuff. Are there some things that you know, for sure, that definitely vary from state to state that people need to keep in mind?
Jen Kidwell 42:43
Well, yeah, I mean, there are there are a lot lots of things like it’s it’s tricky, because there’s nuance in every state, the general shape of what the documents can do are often very similar, but the even the the intestacy statute, right, so that is 50 cent word. But that is the default for what happens if you die without a will. Right. And so a lot of people say like, you know, if they don’t have a well, they’re like, Oh, well, I don’t I don’t have a plan, you do have a plan, it is the state’s plan, the state’s plan is what will happen if if you die without having kind of looked at that and made a plan for yourself. And that is different in every state, right? Sometimes it you know, divides everything evenly between children, sometimes the spouse gets everything, sometimes it’s divided between a spouse and children. Sometimes it’s, you know, it’s divided, sometimes parents are factored in if they’re their surviving parents. And so that’s something that’s different in every state. And so it’s different that it would have to be sort of worked around with with a with a will, or trust, depending the ability to name Guardians is something that in most states, or guardians for minor children, is something that in most states is only something you can do on a will, there are a few states that allow you to have kind of a separate document that that appoints a guardian for minor children, but in most, it’s just a will. So that is, that’s a big deal. Because there are a lot of people who feel like they don’t have anything, which may or may not be true. Sometimes when you start to think about like, you know, retirement assets, and just kind of little pieces of property here, they’re kind of adds up maybe to more than one might expect. And so they feel like they don’t really have anything but they come to me for a well because they want to name guardians for their children. And so that’s, that’s a big thing to think about. If you do have minor children and you don’t feel like you have anything you can get a will that is I always recommend going to an attorney because again, you don’t like you were saying earlier, you don’t know what you don’t know. And there are a lot of forms that you can get online or forms from other spaces. And depending on your situation those like might be they might like get you started, but but they might not ask the right questions. They might not sort of you know, they’re not able to reflect with you and kind of enter in the process with you and so or, you know, talking to an attorney, even if you feel like you have a simple situation and only need it for one thing you may find, you may find that a couple other couple other points are important. So but otherwise there’s there’s variation, right in some states probate. So probate is the process of retitling assets that are in your name when you die. And so if you’re thinking about like, so assets that you hold by yourself, if you when you die, you can imagine that you drop the assets and then the court is like, oh, assets on the floor, this is we have a process for how to like pick those back up and like get them where they need to be. In some states, probate is not so bad, right? It doesn’t take a super long time, and maybe only takes like nine months to a year, it may not be super expensive. And so there may be great resources in your state for how to how to go go through that without needing to hire an attorney. And then in other states, it may be crazy, right? Like in California, people work really hard to avoid probate, because it’s very expensive. And it takes a very long time, and things get tied up forever. And so that’s a that’s another thing that really varies a great deal. by state. I think in culture, people just really want to avoid probate because they’ve heard terrible things. And depending on your situation, that might be true. But depending on your state and your and your family and your life, it may not it may not be so bad. So lots of variation.
Victoria Volk 46:20
So would you say the biggest mistake that people made make at end of life planning, estate planning, all of that is not going with a lawyer.
Jen Kidwell 46:30
Again, it really depends, I really do think that even if even if it’s just like attending an information session, or you know, a lot of attorneys have, I care a lot about the education and counseling parts of my role, as hopefully you could tell. And so I do a lot of educational like seminars, and I go to mom’s groups, and I go to church spaces and talk about all of these things, to try to help people you know, feel confident that they can like attack the process. And, and there are a lot of attorneys out there who will, you know, sit down and have a conversation with you. And not, it’s not, it may not be quite as friendly as you think, depending on depending on your needs. And so it’s definitely worth looking looking into, even if it’s something that you might need to budget for a little bit, having the peace of mind of kind of going going through that with an expert, who knows and understands how the laws have changed, what what changes may be in the pipeline, and how to kind of plan for those two is a big deal. Like I mentioned, they’re big changes went into effect in 2020. And so people who planned, these big changes primarily have to do with retirement accounts. So people who planned to do certain things with their retirement accounts as part of their estate planning before 2020. Like those, some of those things are just not possible anymore. And so they if they haven’t updated, if they haven’t stayed in touch, they haven’t reached out to an attorney who has been wrestling with this crazy law for a long time. They’re not they’re not going to know. And they’re not going to know if they need a different structure, or if they need to kind of update their plan accordingly. So, so yeah, I mean, I think seeking professional advice from an attorney is always a good call. But as it relates to the biggest mistake, it’s hard to tell between not speaking to an attorney, and then not speaking to your decision makers. These are, these are sort of similar, I think, in terms of their, their importance, in terms of how the plans actually play out in the end,
Victoria Volk 48:38
I just had a scenario cross my mind. And I’m just like, oh my gosh, I couldn’t even imagine like, if you’re college age, but you but let’s say you’re a parent, your parents, right, and you have college age, but you also have kids still in school, high school, and something happens to both you and your spouse. So you got student loans, you’ve got kids that are still in school that need, you know, a parent role model like oh my gosh, that is such a complex, like, I cannot even imagine the situation, what is like the most complex, complicated situation you’ve come across that maybe people haven’t considered for themselves.
Jen Kidwell 49:16
Oh, man. Um, so again, like the the retirement, the change in the retirement roles has really impacted what the best, the best thing to do with some of these retirement cards aren’t right. And so the reason that the laws changed in 2020, is because Congress was looking, they were like, hey, these people have some of these people have a lot of dollars or their retirement accounts, and they’re not actually spending it in retirement. They’re using it as like a wealth transfer vehicle to share it with the next generation or with, you know, with children or with grandchildren. And so that’s not why retirement accounts were made. And so we could probably tax those a little differently and, and incentivize people sort of using them more during retirement. it or you know, tax them create a different scheme where they end up being taxed differently, so that we recoup some of those dollars. And so that has meant that people who have like charitable intent, right, so maybe they want to, like benefit another person during like, so they, they die, and they want to benefit another person during their lifetime. So they want to use a trust and benefit that person during their lifetime, maybe they’re not super great with money, or maybe they have some special needs, or maybe, you know, there may be other reasons. And so they’re gonna have a trustee manage that account and, you know, meet the person’s needs. But then if there’s anything else, they want to go to charity, that seems like a very reasonable thing to want to do. And it’s actually not quite complicated, because of the ways that charities are treated under the new law, and the ways that people within certain degrees of relationship to the plant owners are treated to so dealing with retirement accounts has gotten much more complicated. And, and that is, that’s frustrating, because a lot of folks have have retirement accounts, and they started contributing to them a long time ago. And, you know, they viewed them as savings vehicles, not just for themselves, but for their families. And so with this change, those those folks have have different different options. So now, people who have maybe some charitable intent, but also want to benefit their families. Now we’re looking more at doing charitable remainder trusts, which are cool, cool things that allow you to continue to benefit your family. Now, over the course of you know, the lifetime of the beneficiaries you choose, and then ultimately, then the rest would go to charity. And that, so that may end up being a better vehicle than a more traditional retirement trust. So yeah, I know, that sounds like a little, a little nitty gritty. But um, but those those rules have gotten have gotten pretty complicated. Yeah, and I think it is also thinking about folks with children who have who are like far apart in age, right. So if you have, you know, a 10 year age gap between two kids maybe or if you have kids that are sort of really spread out creating a trust that meets all of their needs, given that they will have very different needs when one is like 17, and one is 30, right like that, that can sometimes be challenging to design a trust to that will, that will work well for for everyone and make sure that the younger child has all of the has access to the opportunities that the older child had, you know, as it relates to maybe going to college or graduate school are other things. And so, and that’s a very like, back to the specific situation that you just sort of deal with as it comes up. But but sometimes can be tricky.
Victoria Volk 52:51
Well, this has been a wealth of information. I feel like, I’d probably come up with 50 More questions easily. But is there anything that you feel is of utmost importance that you didn’t get to share that you feel the listeners need to hear?
Jen Kidwell 53:07
I mean, I think that we’ve you’ve mentioned many times, and I totally agree that at some points, just considering all of these things can be very overwhelming. And, and so when you have that kind of overwhelm experience, I really encourage folks to like return to your values and return to something that is grounding to you. Right? Whether these are kind of stories, that that help you reflect on what is really meaningful to you are stories, that you’ve things you’ve experienced that you’re like, Oh, well, I definitely don’t want that to happen, or I don’t want I don’t want to feel like that, right? I want to feel like this, those kinds of resources, from your own reflections and from your own life are, I think, a great place to go and retreat when you have that kind of overwhelm. And so So staying staying true to those things and and finding, you know, a home in those things, when, when these kind of technical pieces feel a little overwhelming, I think is a is a good call. So I would I would encourage that and and hopefully that is that is a helpful tip.
Victoria Volk 54:09
What is one thing that you would love to scream to the world about your grief experience or this work that you’re doing?
Jen Kidwell 54:18
Hmm, I mean, I think one of my favorite metaphors for grief and there are so many good ones is that and it works really well with my like weaving the way that I understand sort of meaning in the world, but that that grief is like a drop stitch. So I’m not really a knitter. I really enjoy spending time with knitters because I find their knitting to be very soothing. I have been known that family functions just sort of curl up next to someone knitting and b b suits. But my understanding is that when you are knitting and you drop a stitch, you can either go back and fix it. Or if you don’t, it just leaves sort of a little hole in the in the finished garment or the scarf. I think that’s such a good metaphor for grief because You can’t really go back and fix it right? Like you can’t, you can’t undo it, you can’t make it go away, it is just it becomes a part of you, it becomes a part of you that you carry into all aspects of your life, right. And there will be moments when all you feel like you can see is the whole and there will be moments when you can zoom out and see the whole the whole garment and the garment, your life is still beautiful and meaningful, even though it ends up with all these little holes in it. It is uniquely yours. And those people that the love of those people is still with you, right? It’s reflected in these in these little kind of absences. And so I’ve been reflecting a lot on that, as you know, we we just celebrated Easter, right. And actually, so many holidays, this season is so great, they all overlapped all these like religious traditions and very beautiful to see reflections of that. But my my grandmother was a singer and sang beautifully, right, she died, she was almost 98 and had a beautiful voice. And I have so many recordings of her singing that I did very sneakily. So she didn’t know, and, and I think, you know, in the choir on Sunday, and thought of her a lot like it was it was a beautiful way to feel close to her. And so I think as we get through sort of the first year of of her not being with us, there will be so many of those opportunities to feel close to her. And to feel all the feelings, right joy and humor and sadness. And, you know, wishing she could be here to tell us some of the stories that that we’ve heard before, but that she you know, she tells the best. And so, so I think it just is cycling, we will I will cycle through it. And that is okay. That’s how it is.
Victoria Volk 56:47
Thank you for sharing that. What’s your grandma’s name was Gigi?
Jen Kidwell 56:52
We Yes, we called her grandma. And then after she had great grin. great grandchildren, they called her GT great grandma. So yes, so she got to spend a lot of time with them in the in the month before she died. And and that was a that was a gift, a gift to everyone.
Victoria Volk 57:08
Yeah, no, a lot of kids get that opportunity. It’s amazing. What is one thing that your experiences have taught you like grief and the work that you’re doing?
Jen Kidwell 57:18
I think it’s that the default is not a good death. Like the medical system, there are so many things that really push people towards an institutionalized death experience. And that’s not always avoidable. But there are, there are times when it feels like doctors, other people are not kind of brave enough to talk about these things with families. And so like families need to be brave, and to be aware of the options and be able to like assert the vision and the options that they have. And so the opportunities for whether it’s hospice, whether it’s working with an end of life doula, whether it is kind of just finding ways to claim a space for your loved one in an institution, right, like using using music using art using reading, right, like there are so many tools that we have to create an influence a space to reflect to the the personality and the the joys experienced by the person who is needing to be in that space. So I think just being aware of that, like, what a good death is to you is probably not the default of what like the system is is going to provide you unless you you act within it. So I know that’s not like one of the shouldn’t I should have probably thought of illegal take away but that I feel like is a big really important thing. That is you know, then loved ones carry with them for the rest of their for the rest of their lives. And so yeah, it’s a it’s a it’s a big deal.
Victoria Volk 59:04
It is a big deal and I’m I’m very glad that that was your your share because we do medicalized dying, and death. And I had Dr. Chris Curry. He’s I’ve mentioned in his episode many times throughout all different conversations and I’ll put it in the show notes again on this episode because he was an ER physician whose job was to keep people alive. And what he saw in the work he was doing at that time was people were not physicians were not being honest with family about what was truly happening with their loved one, that they were actively dying. And so he said we medicalized we’ve medicalized dying, and then they die in the hospital. They die in the nursing home away from their family or loved ones, and oftentimes alone, and he’s, you know, so he’s a huge he’s actually he switched gears completely and has been a hospice physician now for many yours and is studying has studied the end of life experiences of people who are dying and was featured in the Netflix Docu series. Surviving death. You might be interested in if you haven’t yet, haven’t seen it, I’ll have to look into who you would like that. So yes, I’m completely on par with what you just just shared. What is one thing I’m putting on the spot? So what is one thing that you can think of off the top of your head that this I want present? Like, if you have that agency, you have that choice, you’re, you know, have a good death? What is one thing that is an absolute that you want? At your end of life?
Jen Kidwell 1:00:45
Hmm, I think I’ve thought about this a lot, especially after, after being there with with my grandmother and I think laughter is something that I want kind of around around me right laughter of my laughter of my loved ones and my kids, right? People telling stories and carrying the joy that I hope that I bring into the world, right, carrying that, that forward, I think about some of my favorite children’s books, and how I would love for people to kind of people to read them to me, whether I whether I can experience them or not, but so that they can experience them kind of together. So I think laughter is a is a big thing. I remember it was that was a significant moment, when we were together, around right GG had passed, but we were still sitting sitting around her and talking about her and playing music and, and sharing stories and laughing and that just felt like a really lovely way to honor her honor her spirit. And, and so yeah, I think I think laughter should be in the room. Even though you know, it might be sad. Hopefully, it’ll be a little sad. But I don’t want people to be to be afraid, too afraid to tell stories and to and to be silly and playful. So yeah,
Victoria Volk 1:02:08
I just got full body chop up. That was good. That was very good. Thank you for sharing that. And it is true. I think, you know, we it’s almost like you feel guilty for feeling joy in a moment like that. You know, and it’s like you just expressed it’s, that’s the juice of life is joy. Really. It’s all the things.
Jen Kidwell 1:02:29
Yeah, yeah. Yeah. We were embodies all of that. Yeah. Yeah, I was with my daughter in the cemetery before the day before my grandmother’s service. And my mom and I were there together. She has a My mom has done done a ton of childcare for us and is much beloved, by my by my kiddos, really, by all children, she encounters. But and so Lucy, my daughter was was there and we were she was sort of like skipping around and, and I could tell at first that my mom was a little uncomfortable with the fact that she was like, being a six year old kid kind of, you know, dipping in and out of the of the reflection and being kind of silly. And I, I wanted to say something to kind of help both of them maybe feel a little more comfortable. And so I I told I told this is like Sweetie, you. I want you to be joyful. If you’re if you feel joyful here be joyful, right? We are respectful. We do not, you know, we don’t touch the gravestones, we don’t you know, there’s a lot of things we don’t do. But think about all the people who were buried here and all of the life that they loved, right? They all had a favorite joke, right? They all they all had moments in their life when they couldn’t stop laughing. And so think about how it’s like it honors them to bring that spirit to this place. Right? And so and so yes, we are respectful. But absolutely, we are also playful. We are also you know, if you’re feeling joyful, then then you’re joyful. And we live in that space, too. And so that was a I was really glad for both of them actually to be able to kind of share that and then talk about it a little bit with them. Because again, like we don’t work somber, right, where cemeteries are somber, and maybe that’s okay, sometimes. But, um, but maybe not all the time. So,
Victoria Volk 1:04:16
That’s, that’s the gift that children give us. Righ? Yeah. And lighten up, lighten up a little. And here’s another tip. You know, when I was when I was listening to, it’s really considering that person that you’re there to support and their their transition. What did they love? What did they enjoy? Bring that to the room? You know, it’s like you love children’s books. So Exactly, exactly. Like you said, like, what are some of her favorite books and when I used to volunteer at the nursing home, I don’t have the time like I want eventually I want to get back to that. But I would read to the residents, the newspaper whatever it was they wanted me to read because you lose You know, your eyesight isn’t the best you get to a certain age, you have glaucoma, cataracts, all these things you can’t. And if you loved reading the paper, and you can’t do that anymore, you’re not you can’t enjoy the paper anymore. And so having someone to read it to them, right. So, I think that’s a good tip for to leave people with as well. If you have someone who’s transitioning, just think about what they truly what juice them up, what did they love doing? What were their hobbies? And I’m curious, what is your side hobby business?
Jen Kidwell 1:05:29
Oh, um, so I did, I dabbled in some web design for for fun. And also for, you know, for clients. And then also I, I sell some curriculum that I that I written mostly for, for youth groups, and for adult small groups, some there’s sort of an anti racism series, and a couple series that I loved using TED talks to in in ways to kind of bring that in conversation with with Scripture and with the experience of, you know, whatever, whatever the group was. And so I have a handful of those, and that, you know, a bunch of other things, games and other things for mostly around the ministry ministry world.
Victoria Volk 1:06:12
Well, I send that my way, because I would love to include that in the show notes as well, because that could be a resource for people, especially with inclusion and all of that, you know, so I think,
Jen Kidwell 1:06:22
Absolutely, it totally well, and the, and I do, as you mentioned, I am, I am in Maryland, but I do do values, values based coaching for anyone who is feel stuck or overwhelmed in the process and wants some some guidance and interaction to sort of, really ground themselves in, in their, in their values and in their stories of identity to so I do that sort of as a It’s not I don’t, you know, provide legal advice as part of that. But as someone who, who knows the types of questions that would be part of an estate planning journey, in any given state, I offer some of that as well. If that, if that sounds helpful.
Victoria Volk 1:07:04
I love that you brought up the values piece, because I’m a certified Youmap coach. And we through that process, we there’s like four assessments that basically ultimately create what’s called a you map. And it’s basically a map of you, that includes your top five strengths, your values, how you’re wired, and your skill set that you you know, the your most preferred skills, and all of that together creates a U map. But what the U map really does, too, is through the values, it really creates a it’s a pathway for making decisions, right. And I, I hear that, and what you’re saying is that our values really dictate if we tune into that guidance that we have instead, you know, not let it be filtered out through other people’s perceptions, or what we think they think or what they want, or whatever, if we stick to what our values are, and use that as our guide, we can never go wrong in our decisions.
Jen Kidwell 1:07:58
Right? Right, then our story is always ours, right? Because it come out of it has come out of us. And we can we can use those values and those sort of those those words and those phrases as we as we tell our stories, too. I think that’s that’s a big anyway, talk about this forever.
Victoria Volk 1:08:15
But I know where can people find you?
Jen Kidwell 1:08:20
Yeah, so I am at www.marylandlegacylaw.com You can check out some things there. Again, if you’re interested in chatting about some some values based stuff as it relates to estate planning. That information would be on my website. And then if you if you happen to be interested in the in some some ministry resources, or even a book about storytelling, that said, jenkidwell.com, so I’ll send those to you and you can include them if you’d like to.
Victoria Volk 1:08:49
Awesome. And how about on social media?
Jen Kidwell 1:08:52
I am mostly just on Facebook. Just my self. Jen Kidwell. Well, you can you can find me. I have a picture of me with my cute little ones. So if you if you need some some kiddo joy. They are they are on my on my Facebook feed from time to time, primarily where I am.
Victoria Volk 1:09:13
Thank you so much for being here. I think this was a very much needed conversation that I’m glad to have brought to my listeners. So thank you so much for your time today. Great. Thank you for the invitation. And remember, when you unleash your heart you unleash your life. Much love.
Childhood Grief, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Mental Health, Podcast |
Stephanie Cerins | Paving a Path to Happiness After Childhood Loss
SHOW NOTES SUMMARY:
We all have intuition. And we all have the power to tap into the intuition within us, too.
However, sometimes our intuition doesn’t feel good to us. As was the case the day that Stephanie’s father wasn’t coming home as was expected. She looked out the window, saw his car but didn’t see him and instinctively knew something wasn’t right.
At the age of 15, Stephanie found her father dead. The reminder was constantly there from that day forward, not only of his absence in her life but also the trauma of that day so close to home.
Life was a rollercoaster from then on, a life of partying, drinking, and working hard at burying that day in her psyche altogether. But as grief does, it spills out into all areas of our lives. Such was the case with her first two marriages, where she would see patterns repeating in her life and ultimately found the courage to seek help through Alcoholics Anonymous and get out of an abusive marriage.
After getting sober at the age of 24, her past began to resurface – and so did the memories she had long-buried.
You don’t get a course in life when you are born. – Stephanie Cerins
Isn’t that the truth?
We are all learning as we go. Through the trials, tribulations, and grief packed into it all – it is through life experience we grow in wisdom. And it is through the wisdom we glean from our lives that we can be of service to others. That is exactly what Stephanie has done in her life.
One of Stephanie’s greatest lessons in A.A. was that no matter how big of a mess you are, you can still help someone.
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Victoria Volk 0:55
Thank you for tuning in to grieving voices. today. My guest is Stephanie Cerins. She is a happiness enhancer. Grief became her constant companion at the age of 15 when she found her hard working 39 year old father dying from alcoholism. Stephanie’s journey through grief was quite messy. At first, she turned to booze and drugs to cope with her grief until she found AAA affirmations and the ability to talk about her feelings. The affirmations you will read in her books come from her 42 year journey into grief, self love and her acceptance of the impermanence of life. Thank you so much for being here and sharing your story.
Stephanie Cerins 1:36
You’re welcome. It’s my pleasure, I feel blessed to be able to share my message of, you know, we’re all going to die. But maybe we don’t have to be stuck in it in all the grief for so long as I was in so if I could help shorten someone’s grief by even a day or a year, or I don’t know, I feel like I mean, my dad died when I was 15. And I never had a conscious memory of it till I was 29. Again, after you know, it was really stressful time. So
Victoria Volk 2:05
Can you go explain that a little bit more deeply? The conscious awareness of that?
Stephanie Cerins 2:11
Yeah, well, it was like my subconscious had shut out that I had even had that experience. Like I didn’t have a memory of it, or anything that I had found my dad until after I went through a and sobered up, it was just like my brain had blocked that memory because I didn’t couldn’t handle it. I guess. Like, we couldn’t talk about my father dying like me, and my mom would just cry. So we just, you know, and they told me, you know, my mom’s friends, I remember them telling her to take us to counseling, but it was 1980. So people didn’t go to counseling, then. Because then you had something wrong with your brain. And oh my gosh, that’s just too humiliating. So we just got to muddle through on our own. And then when I quit drinking at 24, that really helped me to be able to talk about my feelings, and just realize that, wow, everybody’s a big mess, like, because we all go around just pretending everything’s good. And how are you today? Oh, fine, I’m doing good. How are you? And all these, you know, just on the surface conversations, in so many people had with me, right that until I went, Hey, I didn’t know that he will. So many people are suffering and that a lot of people had it way worse off than me. And that just helped me put my life in a bit of more perspective that like that old Buddhist story and take a cup, if you have a grief, take your cup and fill an Esper some butter to anybody that didn’t have any grief, right? And you pretty soon learn that everybody has grief and that everybody has a hard life. And that, you know, the sooner we can see that and just come together and support each other, the better life will be. And so that’s my goal is to just try to be supportive to my friends and family and clients and in my reflexology and Reiki and happiness enhancing affair that I’m trying to get everyone to, you know, take that life a little lighter. Right? We’re also serious about things and stuff. And so how can we be more gentle and not worry about it so much? Everything
Victoria Volk 4:27
Well and share the burden, right? It’s yeah, carrying the burden. And I think to what I’ve connected, what I’ve connected and the work that I do with clients and Reiki and grief work and all of that, too is is that those that have an openness to healing into their own embracing their own story, are much able to connect with others more deeply. And because they’ve probably connected with themselves in a way that has brought them some lightness right and So, if we open ourselves to that process, beautiful things really can come from it. And so what did that look like for you? I mean, because your father had he was an alcoholic. Right? Yeah. So was that pretty much all of your upbringing? That’s all you really knew.
Stephanie Cerins 5:22
Yeah, he was he was a functional alcoholic. Right. So he went to work, and then he drank, but, and so yeah, that was what I saw. And experienced because he was drunk my whole, you know, it got worse. But you know, he was always partying with his friends and playing pool and everybody had a pool table and a game room. And, you know, that’s how we went over to everybody’s house and took turns and had drinkin parties, right. So, you know, all of my parents friends had a shorter lifespan than their parents. Right? Like, my mom’s dad. I mean, my mom, my dad’s mom was 74. And my mom’s parents were into the 80s and 90s when they went and my mom had terrible rheumatoid arthritis because she was x rayed for acne in the 50s. For six months, two or three times a week, they baked my mom under an x ray machine called the treat master to heal her acne like, come on. So anyway, her mom should just quit making them sweetie things. Wow. So yeah, so it was really, my parents weren’t very happy. And like, my mom never felt very well. She used to wake up even in her 30s and say, I feel like grandma pity poo. Right. And so when I grew up, after my dad died and stuff, I just wanted to be happy. It’s like, we have a house and dirt bikes and horses and stuff. And but nobody has any happiness, right? How do I get happy? And so I just started reading self help books and figure trying to figure it out on my own right?
Victoria Volk 7:04
What age was that when you started reading the self help books.
Stephanie Cerins 7:08
It was actually before my dad died. My first one, I have my friend, this is my favorite one working with the law. And it’s about God’s law. And I bought a whole bunch of them. So this is one of my last ones that’s brand new. But I’ve probably read this book about five times. And then it’s somewhere it says, you could manage your mind or your mind will manage you. And I thought, well, I want to be the boss of my mind. Well, little did I know how hard that would be some days, right? That, you know, and to just take responsibility for my emotions and my thoughts and train my brain what I wanted to think instead of just thinking it gets to think whatever it wants.
Victoria Volk 7:51
So I mean, first of all, I think to have that awareness at 15 Hate, like, how do I find happiness? I just, you know, and to have that. It’s like, all this stuff is around you. I should be happy. Why am I not happy? Right? So like, what? I mean, gosh, if I had that awareness at 15 I mean, if only all of us would, right? But what I mean, I don’t even know where to go from here.
Stephanie Cerins 8:20
I think it’s because my family had enough money, right? My mom’s parents were quite well off. I mean, not like rich, rich, but my grandpa had his own Karla. And then my grandma invested the money in stocks and all that. And so. So I mean, in my grandma’s house, the golden rule, literally on a plaque up in the kitchen. The golden rule said the one with the gold makes the rules and my grandma had the gold and she made the rules, right. And so I think because we had enough money, there wasn’t that wasn’t a problem, but it was just no happiness. Right? My dad, I don’t I think my dad didn’t like his job. And so that’s why he drank and then all his friends, their wives worked, but he had to be the only worker. And then my mom even needed a housekeeper even though she didn’t even do anything. Right. So I mean, I cannot my wife I can’t even clean the house and she doesn’t even work. I know, you know, I can only imagine right now that I’m an adult. Right. And so, but of course, I didn’t understand all that then. Right. And so, so just the grieving you know, I was like daddy’s little girl, and we did everything together and went fishing and had fun and then when he left I was like, Well, why am I here with mom? Why didn’t you take me with you? Oh my gosh, right. And so I was just so distraught and and it’s like, you know, I’m just gonna die. Well, what is the point of this whole thing you’re just gonna die like this is sign a pointless this life thing isn’t. And so I really had to find a whole reason to live in everything because I was so confused at 15 that I didn’t even you know, I fantasize lots of times, just driving up and rode, right? Because I just didn’t get what was supposed to happen next, right. And so now what I’ve kind of learned is all that happened so I can help other people grieve like my friend Julie, love to my dad married a man like my dad. And her husband died, like almost exactly the same. Like, she had four kids, but and her oldest one was like 16 or so. And the youngest one was six or seven, just like me, you know, really close to me. And my brothers ain’t right. He was eight years younger than me. And so to you know, and now I’ve been able to help her family through she has a son that’s having terrible, terrible times. And through his life, I’ve gotten down and helped and stuff. Because I just understand the grief that that that he’s going through that, you know, she never took the kids to counseling either when the dad died and all the grief, right, even though it was 20 years later.
Victoria Volk 10:56
Yeah, I was gonna thank you for bringing that up again, because I did want to circle back to that, you know, even you said, 1980, not much has changed. I think in a lot of ways, I think with COVID. That’s really, I’m hoping that we don’t take five steps back 10 steps back once, maybe life seems to feel more settled and secure with COVID. Moving forward, I hope we don’t take steps back in terms of mental health and in addressing that, and the needs of kids and everything. But, you know, my dad was, I was eight when my dad passed away. And so I grew up with grief, too. And, you know, so that was an emulated, obviously, for you like how to grieve, right? Like you didn’t know what to do or how to process and things and it sounds like you didn’t have that kind of relationship with your mom either. Is that accurate?
Stephanie Cerins 11:50
Oh, yeah. Me and my mom were very. Yeah, if my mom told me to do something, I went and I would do it the opposite way. Like we didn’t. Because there was a you know, because she was jealous. I mean, she was even jealous that I got boobs, right? Well, I thought, well, your dad didn’t sit you on the lap and look at playboy. I sat in my lap with my dad, and he probably looked at Playboy magazine. So I knew you had to have boobs if you’re going to be a girl, or nobody would like you know, I prayed for boobs when I was five mom. Oh, wow. There, it’s just so interesting growing up. And, you know, there’s so much we could have been taught in school that you know, about psychology and cell personal growth and stuff that we just leave out of school, I don’t know where they think we’re gonna learn at church or at home or,
Victoria Volk 12:38
Well, NASA thing you know, I, I personally feel like it is the responsibility of a parent, to guide your children through all of those things. But when you haven’t learned it yourself, you’re going to resort to what you know, and those patterns and those beliefs are going to be passed down. Yeah, no doubt about it. So that’s why I, you know, we in Grief Recovery, we have a program that’s helping children with loss, that’s prevention. But truthfully, like, I look at it, like the most important grief that needs to be addressed in a home with children is the grief of the parents. Because if they can learn to process their grief, they will teach their children and guide their children through that process naturally. And holistically.
Stephanie Cerins 13:22
Yes, totally. Yeah. But for so long in our culture, it was just suck it up buttercup, right. And now we’ve almost gone the other way that we’re exploring emotions at nauseam sometimes a little too much, I think, right? It’s like we have to have balanced even with our emotions, because we get to buried in them just going down the rabbit hole, well, then we’re stuck there. We had to find a way to, you know, to have it in the background, but be able to move forward even though those experiences were hard or whatever, right.
Victoria Volk 13:53
I think of two terms like coping, and like you said, like a balance. And it’s finding that emotional regulating, you know, for yourself, rather than trying to cope, and it’s learning to regulate yourself there. You know, in parenthood, it’s challenging anyway, it brings up everything and all your insecurities. It is challenging to regulate your emotions. But again, I think it comes back to addressing your insecurities as a parent has ripple effects for the kids. Totally does. And so growing up for you, you started to read personal development books and started to kind of pave your own path to healing. What did that look like for you? Because I know you said you did. You went to AAA and things like that. But what was life like before you got to that point? In because you said you had resorted to drinking was that as a teenager too?
Stephanie Cerins 14:50
Oh, yeah, I started drinking. Yeah, as well. As soon as I got at 15 and a half. I was already starting to drive right pretty much after my dad passed away and I’d already been riding motorcycles and stuff before that. So I knew that how to drive right. And so, and then I just started drinking and partying and I got myself my first boyfriend was 21 when I was 16. So he could buy the booze, right? And so that was very convenient. And, and then, once I graduated school, you know, I just did whatever I wanted, right? My mom would take my car away. And because I was misbehaving, and then I would be good Monday, Tuesday, Wednesday, Thursday, Friday, I’d sleep in, she’d have to give me the car. So I could go to school. Right? So My poor mom, right? I just did whatever I wanted. And she really, you know, I went from being busy, angelic child to, you know, listening to ACDC on the highway to hell, right. You know, it was quite shocking for my mom and, and my whole family, the transformation that I went through, right, and my, even my schoolwork, right, I was almost a student to just barely graduating, you know, failing classes and all kinds of stuff, right? And so, just because I had so much pain I didn’t understand and no one could get. No one was even trying to help me understand, right? I was just having to figure it out on my own. That how can I this this whole point of this life thing? Like, I gotta go through all this, and I’m just gonna die. And it’s like, oh, yeah, right. This This was really, I was totally in shock, right? Like, because my dad just he. He came home from the framework. And he had crashed his car, but and just right out in front of our house. So when I got up in the morning and looked at the main house window, I could see my dad’s car was up the road instead of like, put it in the garage. And so not that I could have seen it in the garage, right? I just shouldn’t have seen my dad’s car. So of course, I just go running out there. And then he was laying in the road. Dying, right? Like, he died on the way to the hospital. Some man was coming back to like, when I was coming up to my dad, and another guy was coming back. And he had already somehow seen my dad went home, called the ambulance, and then was coming back to check on them or something. Right. And then, so I just ran and told my mom, right, and then so, and I already knew when my mom came into the driveway of the neighbor’s house, I said, Oh, my dad’s dead. I says, What do you do, you know, in my own brain, like with your kid brain? And I’m like, Well, how can you know that? Now they’re back to early. He’s dead. Right? So somehow I knew. Right? And, and not that that helped me. But you know, and I just remember thinking, well, now we don’t have to worry if my dad’s coming home anymore, because he’s just not going to come home. Right? Because my mom would sit at that. looking out that window that I saw the car being wrecked, Dad wins to him coming home when you know, because he workship work at a pulp mill seven days a day shift two days off seven days and swing shift two days out seven days a graveyard four days up. So the times he came home was always switching around. Right?
Victoria Volk 17:59
Well, that’s incredibly taxing on the body alone. And so, you know, did he have a lot of grief himself? Do you think and I know you had mentioned that part of his drinking was possibly due to like just the relationship that he had with your mom. But and we’re not to analyze your father’s grief here. But I want to connect the dots of how this cyclical pattern repeats. And so what was his experience growing up? Do you think that?
Stephanie Cerins 18:33
Yeah, I don’t think that I think my dad got a girl pregnant and had to marry her and felt very trapped by his life. And I don’t think that he enjoyed his job very much at the pulp mill, even though he did it for 18 years, right. I mean, he made the best of it. And he was a hard worker, and he would go help his friends build their houses or whatever, you know, if you gave him a beer, he would do anything. And you know, he was jolly and happy and you know, always the life of the party. Right. And, but and in his group, I think he had a lot, right. I mean, his I’m sure his parents weren’t emotionally intelligent. I’m remember his mom being quite strict and harsh. And, you know, grandmas Sorenson only had sex once a week, once a month, whether grandpa needed it or not. That was the subtle, right. So I think from a very strict but I mean, before the pill. Yeah, I mean, you don’t want to be having sex all the time. You’re gonna be having babies all the time. Nobody can afford that. Right. And so I think there’s, you know, I think our families have been so traumatized and stuff by wars and everything in just their you know, there wasn’t anything about emotional growth, right? It’s just like you are how you are and that’s just how you are and, you know, whereas didn’t have to be like that. You can have emotional growth and you can change your life and you can go, you don’t have to be stuck in the same class or system. them or whatever, if you work on yourself, right? You know, and you don’t get caught up in all the sadness, right? Because it’s how we feel creates our life. So if we feel like bad and sad, then we’re just going to create more sadness. We have to, even if I like, in my marriage, my last marriage, my ex husband used to slap me around. And I would say, Oh, well, thank you for that. Because I got to learn something, not to be mad at quiet happened, right? Because the person who taught me reflexology and where I got that book working with the law, my mom’s reflexologist, he let me know that you have to be thankful for everything, if you want to have a good life, because that’s how you stay in the vibe of abundance. By not That’s why it says Have faith in the Bible and all that right, like, because you don’t worry about what’s going on in real life. You keep the faith. And then that’s how it turns out good, right. And so I that’s just what I’ve been trying to dedicate my life to is just keeping the faith no matter what life looks like now, it always like just what has happened in the world, people are all worried I’m not worried because it always turns out the best for me, but Right. So I’m not going to worry because I’m going to be in the right place at the right time. Right. And I think if we could all think that more than that, the hard parts are easier. So that I don’t have hard things to go through or whatever anymore, but it’s just that I’m at peace with it. And it’s okay. I don’t I remember when I read the road less traveled in the first sentence was, life is hard. That made me feel so good. Like, oh, life was hard. Oh, well, then. Okay. I could do all right. It’s not like it was just hard for me. It was just hard period. Right. And so, you know, I cannot not be so worried about it. I think that’s what a I learned in a that. Gosh, you know, my parents were pretty good. Really, compared to some of the parents out there. Like they didn’t even feed their kids, right. Like, they beat their kids. Right? I didn’t get beaten. I didn’t I had food. Right. I had a grandmother that took me to the fanciest children’s Booderee and bought me the best shoes once a year. Right. So Right. So I had a lot of advantages a lot of people didn’t have even though, I still was just a blue collar family.
Victoria Volk 22:17
I resonate and a lot of what you said in I think there’s some people listening that might think that Well, that’s really a Pollyanna approach. You know, like, have you been told that like, how I don’t worry about anything, nothing is worth worrying over. And worry i I’ve I’ve read to that worries, a prayer you never asked for, like it’s, but some might view that mentality as Pollyanna. But for me, I would always try to find the silver lining, like the well at least this didn’t happen, or at least I have this, you know. So it’s it’s kind of taking the situation and just and reframing it like I became a master at reframing because I think I would have succumbed to my own grief. Had I not learned the power of reframing.
Stephanie Cerins 23:07
Yes, I think you said it very well. I think that’s exactly where I was. I was just so overcome by everything that because my mom wasn’t well, right. So and we had horses and stuff. And we had board horses that I took care of. And there was lot right like, my friend Julie told me once I can’t believe how much you had to do. I thought it was so your parents were so mean, because you had to do all this stuff. My never thought that I love the animals. I love taking care of them. I wanted to have a farm, that I was Laura Ingalls Wilder reincarnated.
Victoria Volk 23:39
I love that show. Little House on the Prairie. Yeah, I love that show. And I think just having something to nurture, right, something else to take care of. And I, you know, I’ve heard too, like I’ve read in grief. And I know that with grief, the fastest way to get out of your own sorrow is to help someone else or something else, like turn that take that love with nowhere to go right? And put it into something else and you put it into your animals. And so have you ever I mean, I imagine you have but I’m sure you’ve reflected on that time. And those animals are probably the blessing in disguise that you had. I was I was trying I didn’t live on a farm. We lived in town. And I’ve I always wanted to live on a farm. But I would always I was the kid that always brought stray animals home. You know, I just it’s because to like I had this love with nowhere to go like I didn’t know what to do with it because in a lot of ways it was rejected in my house and it wasn’t emulated for me. And I think that’s so important to have somewhere for that love to go
Stephanie Cerins 24:48
Yeah know for sure. I was very lucky to have the horses as my friends and the dogs and you know, all the animals that I got to attend and stuff. It was very healing for me. And it I mean it did Even teaches you about life and death. I mean, a friend of ours had some goats I was going into go for Ah, I got a couple of goats. Some cat came in, got it my goats and they both were dead, right? I mean, you know, large lots of death on the farm right. And, you know, my dad wanted to raise cows. So we went and got nine, three day old baby calves. So then I had three babies, nine baby calves repeat Well, we didn’t know nothing about it. And luckily four of them lived somehow five of them died, right. I mean, I think that was good that I learned that but it’s even though I had experienced, you know, previous steps, some grandparents are different things that still didn’t prepare me. For a out of order death when your parent dies so young, or if you have a child that dies, that’s another kind of an out of order death. That’s like, there’s not even a word for it, right? They save when you lose your kid, right? So
Victoria Volk 25:51
So how did growing up with grief shaped your life in adulthood?
Stephanie Cerins 25:56
I think it helped me to, to enjoy my life more to really understand that. It that I do have an effect of my life because I was able to cope with the grief, right? Like I overcame it and dealt with it. And even if it took years and years, and it’s helped me to make peace with death. So I think death is my friend now. And I’m not scared of it. And you know, I’ve even been thinking about becoming a death doula or something like that right? To help people to be able to cope. And to help even make fun arose, right? Like, I reached out to a group that does a grief subscription to help people. And they wanted someone to help write about to people to cheer him up about grief, and they wanted you to have a degree and stuff and I don’t have a degree, but I thought I’d apply anyway, right and see what happens. And so I might get to write for their paper, right? And so just to be able to, to reach out in different ways to be able to connect in help people understand that there’s, we’re going to have grief, and to not, you know, be so hung up on I mean, we’re all gonna die and to be able to just have a good cry, and then be okay, right and move forward, right to not just be stuck like I was for so long, and I read and just like, I can’t even believe that my dad, I didn’t Oh, my God. And that’s not right. And just I was just so spinning and spinning and spinning, right. And to be able to come out of that and move forward in my life. And to not worry about death anymore. I know I’m gonna die. And I hope it’s sometime in the future. But if it’s not, oh, well, and I think it even helps me deal with all this mess of the Coronavirus, right and everything because it’s like, I not worried about it. I’m gonna be healthy until I’m not. And if I’m not, oh, well, then probably there’ll be someone to help me because I try to be helpful, right? And I don’t, you know, don’t worry about things because it just causes more stress. And then you get more wrinkles with wrinkles, and we pay 1000s of dollars on creams and stuff. My palm died. Oh my gosh, there was so much anti aging creams and soaps. I gave out swag bags, practically I had all these little baskets of stuff for people to take and remember my mom and you know, and so when my mom died just a few years ago, it was so easy. Because my dad had died. It was so traumatic, right? And so even though it was hard and achy. Now, it’s like I can’t say it’s nothing when people I love die, but it’s certainly the worst one I’m sure happened already. Right, because it was so traumatic.
Victoria Volk 28:36
Well, I’m because the relationship was different. Right? Yeah. I mean, every loss is going to be different because the relationship is unique.
Stephanie Cerins 28:44
Yeah, that’s for sure. Yeah. I didn’t think of it like that before. But yeah, for sure.
Victoria Volk 28:49
How did you know people will say to or, I don’t know, they say I don’t know who they is. But you tend to marry your parents. You know, you tend to look for someone or marry someone like your parents. Did you find yourself as an adult? Like attracting someone like your father to you? Or had you come so far in your healing? That it was very different? It was a different experience?
Stephanie Cerins 29:18
Yeah, no, I didn’t really marry people like my dad. So much. I didn’t marry any womanizing, man. But I think that but I married my other own kind of weirdness man right and because this is my third marriage, and this marriage is I’m I’m coming into the 18th year so I think we’re doing pretty good. And but yeah, my other marriages were very I was just so I just felt so alone and lonesome and I couldn’t stand to be alone. And I this, I just wanted anybody to like me, right. And then as I aged and progressed, it was like, No, I mean, I remember sitting in a wine bar and one lady was like, as I get oh, Although I get less pickier than I thought as I get older, I’m way more pickier. It’s like, I’d rather be alone than put up with what, you know, I’ve put up with something. Right. So it’s just more I think it’s been just helpful to, to be able to know really listen to what I want. And like I was committed to not having children, like I didn’t want kids. And you know, when I turned them in a pose a few years ago, I was like, Shit, I did it. I didn’t have any kids. I kept that word to myself. Right. And, and that meant a lot to me that I did that. And so because just I felt like I needed to reraise myself, How can I trust some guy to be there? The whole time. My ex husband didn’t want to have children. My first husband wanted to have children. But I was just like, you know, you tell me you have two children and I haven’t met them. So I think they’re not really dad material like not, right. And so my first husband was a partier in a drunk. And so he was maybe but not, but he wasn’t hard working or anything good like.
Victoria Volk 31:05
That the quality of looking for alcohol to serve the self is was similar to your father then?
Stephanie Cerins 31:12
Oh, yeah, it was terrible. Well, especially for me too. I’ve even thought now if if my dad was killed by alcohol, right, and his proclivity to drink. And I had always thought, well, what if an assassin had killed my dad? I wouldn’t have dated the assassin but I did sort of date, right? Like because I drink so much like, I was in a when I was 24. I got a DUI when I was 21. You know, so I drank you know, I drank and drove off. Drive blackout. Right. Get home. Don’t know how, right lots of times. But I would tell my dad when I was struggling, he’s dead right out. You had to get me home. Right. And I guess he did. Because theory I’m still right. When a lot of times when you know, I just thought you know, I don’t know how I got there.
Victoria Volk 32:00
So how old were you with that first marriage?
Stephanie Cerins 32:02
I got married the first time 21
Victoria Volk 32:05
Like very new and your grief yet? Like that’s not very far out from your grief and you hadn’t addressed it by then really? Have you? Had you?
Stephanie Cerins 32:12
Oh, no, no, I had I didn’t even start address even when I went okay, I wasn’t really starting to address my grief. Till I was in my second marriage. My ex husband really helped me. He had worked on himself a lot. And I learned more about self help books. And even more salesmanship books, and just personal growth. So many different kinds. Right? That’s when I really started reading. And I also, I worked at a private college and so I cleaned the bookstore. So I was open to a lot of college psychology books and different books that I could buy, just you know, the bookstore will sell you a college book, even if you’re not in the college. Right. And so I bought a lot of books that helped me to, to understand grief and grieving and personal development and all that stuff.
Victoria Volk 33:01
To understand yourself. Yeah. And myself.
Stephanie Cerins 33:05
Yeah, exactly. Because I didn’t have any understanding of what I you know, why was I so upset and everything else. And so the grieving that I had that was so hard, I feel very relieved that I did it. And you know, that any helped me know me, and hopefully I can help others. Right. That’s what I learned in AAA to, no matter how big of a mess you are, you could still help someone. We’re all here to help.
Victoria Volk 33:28
You had mentioned that your second husband was abusive in some ways. Yeah. So if he was working on himself was it. I mean, his journey was his journey. But obviously, that was more grief for you.
Stephanie Cerins 33:42
I guess, when I met my husband, I never had had a climax in sex. And so I had been trying to find a man who helped me with that. And he helped me with that. And that was such a relief that I thought maybe I could help him to stop hitting people, too, by loving Him enough and giving him what I thought he needed, right. But all I learned in that relationship is people are just going to be who they are in. I’m not in the people fixing business anymore. And by the end of it, I just told God cheese, I’m not a very good person. Because by the end of that marriage, I could remember laying there like fantasizing or imagining or whatever you want to call it ending him because he hit me so many times right or slept in that it wasn’t me that he would hit anybody. And so that helped me to forgive him and to be able to move on because I realized by me staying there, he couldn’t control himself, then I was actually harming him by continuing to stay there. And so that’s how I was finally able to leave because he had so much grief and there was so much someone put him in the dryer and turned it on when he was sick. Can you imagine like he was so abused? They his family had so much physical abuse, right and so everybody hit everybody and his brothers and sisters were failing stuff like his sister moved into an apartment. She lived there two years, she hadn’t unpacked a box, there was boxes stacked everywhere in the house. Like, there’s just ramping dysfunctionality, right. And so just to, we just were dysfunctional together. And we helped each other as much as we could. And then when I realized, Oh, this isn’t working for me, I just slept in, started, I went to a battered women’s shelter and started over. And just, I even gave him the car and everything, I wanted him to just go away. Right. And so he left and it was my car. And, and I knew that I would get a new car, and I did I got another old beater. That didn’t cost very much and it worked. Okay, and, you know, just keep on moving forward and don’t get stuck if something bad happens, right? Or if you make a mistake, oh, well, this, I’m just undo it right. So I left and started over. And you know, my first this is my first my first book was healing my heart after domestic abuse, and just affirmations. And then I and then my next one that just came out I did in November last year. It’s the same principles, just affirmations and just to try to help women or men whoever, to be able to get out of their grief and their or their abuse and to realize how important our thoughts really are and what we think and what we feel. And it’s not just like feeling sorry for yourself, or worrying or being upset, it’s just that’s really is the problem is that we can’t quit obsessively thinking about what happened, because it’s just what happened. And if we don’t have to get hung up on it, then we can move through life better. And it’s easier. Because I was hung up on my dad’s death from 15 to 29. I mean, I blocked it out, and I didn’t think couldn’t remember it. And that’s how I messed up, I was friendly. And then when I could remember it, then I could start healing and it’s coming out of myself and just, you know, have dreams about it again, and let and let it release from myself and move forward. And like make friends with it.
Victoria Volk 37:11
I just want to highlight one thing you said because I’ve never heard a reframing of that sort when someone has abused you and you’ve reconciled it in your mind in the way that I’m not helping him by staying here. I’m not helping him grow by staying here. And you’re, you know, to, to how to so hard like to take in like in Grief Recovery, we say take 1% responsibility. And that’s why the process of Grief Recovery can be so difficult for people who are abused. You know, I was molested as a child also. And so that was a really difficult part. That’s why forgiveness is so hard for people. But forgiveness isn’t for them. It’s for you. But I think a part of that is just what you said it’s just taking just a sliver of responsibility of your ownership in that relationship because it is a relationship and a dance with grief when two dysfunctional people bring their all their baggage and they just dumped their luggage and it’s all just meshed together. Right? That’s That’s how relationships often start. And you attract. Like attracts like, right? And so I do want to get to where that changed for you because the relationship obviously once you started to let that grief come out, you attracted someone who who has now been your partner for 18 years. And so what did that look like? What helped you I mean, I know you did a but what then what helped you progress in your evolve your grief?
Stephanie Cerins 38:51
I think after my dad died, I was just so scared of being alone. Right that I would do anything to not be alone have roommates, whatever, right? To never live alone, never be alone. And then like my ex husband, we did everything together. We cleaned houses together, we rode motorcycles together, he even came into the public bathroom with me eventually, you know, like, because I was so scared to be alone and make my own choices. I picked controlling people to make my choices for me, then I don’t have to be responsible and whatever happened or whatever happens, right? And so then when, during that marriage with Jeffrey i He was a salesman, right and he sold me for years. So but I learned he helped me understand psychology and people. And so really I got over my fear of being alone during that time and I just felt more confident around people. And just by reading all those self help books and in that marriage that you know everybody’s a mess. And that life is hard and that you know, everybody’s scared. In the whole world, and so by realizing that I’m not the only scared one, if someone lashes out, or does something that makes me uncomfortable, I really kind of know now it’s really coming from them, it’s I’m triggering something inside of them. Like someone triggers something inside of me and I get upset sometimes to write, I try not to, but on occasion, I still have a screamingly new bed. And I try not to, but you know, we’re all only human. And if we can be more gentle with each other and not take it, you know, someone has a meltdown. And then the other person takes it so serious that they, they get their feelings hurt, and then they lash out to the next person. And if we can just stop that repeating lashing out and realize, oh, that person just insulted me because they’re hurting. I mean, in it at 711, they show you a video where a guy and his wife have a bite in the car, and the guy comes in the store, and He’s so rude to you as checker, right? To show you to not be triggered, right? That, Oh, this guy’s not mad at you. He just, and really, that helped me in life to that little psychological movie to have that. Wow, it’s really, you know, my dad was really frustrated in his life. So that’s why he held me down and tickled me and did things to me that made me uncomfortable, because he was uncomfortable. So if I can deal with my own uncomfortableness, and not pass it on to someone, then that makes me feel like I’m, I’m helping in that part of what I’ve lived through, is helping that I’m not you know, dumping my poop downstream. Right? I dealt with it myself with me and God and talked it out with friends that are trustworthy. And, and because we’ve learned to share. I mean, that’s what’s been so hard about this COVID, we’ve been so separated from everyone, and we need to be able to talk and communicate and connect, because that’s how we realize, Oh, I’m not such a mess. You have problems too. Right. But in our society, I think we don’t want to talk about that. And I mean, you know, we are all everybody’s just puts on what is cool going on in their lives and talks about that. Meanwhile, you know, they just got kicked in the head last night, like I did, but they didn’t tell and I didn’t tell right? And if we can just realize that everybody’s going through stuff into, you know, to try and if they do something to us, oh, well, maybe, you know, someone was mean to them, and it didn’t have nothing to do with me. You know, because our parents are broken when they have us because, you know, we’re and then, you know, that’s why I didn’t make any kids because I didn’t want to break anybody. I thought I could always adopt if I needed some there’s plenty of people around,
Victoria Volk 42:49
You know, you talked about death and how you’re not afraid of that. And and you’ve made peace with that. Is that something you’ve thought about going to the end of your life? And? And? Well, I mean, if you’ve made peace with being alone, too, right, like so? It’s not You’re not seeking relationships for codependency reasons, right? You’re seeking relationship chips to enrich your life. But I’m wondering if that decision to not have children? Is that something that you think about? As you’re getting older now?
Stephanie Cerins 43:21
No, I’m really glad. I’ve especially with this COVID going on? No, I’m glad. I think there’s ya know why I’m so glad that I didn’t have kids. I’m just gonna make friends. And you know, even some of my people with people that have kids, oh, well, I wonder which kids is going to take care of me when I get home. Like, I don’t even think about that. Because it’s just karma. If you do good, you’re gonna get good. So I don’t worry about something bad happening. Sure. Something bad’s gonna happen. The car will break, somebody will die. I don’t know, the government’s gonna collapse. Who knows what’s going to happen? I’ve been thinking that recently, I thought, you know, when I incarnated here, nobody promised me sane governments. Nobody promised me sane partners. Right. And so I think we just, we just expect a lot in life. And we expect to we see so much richness on TV and plenty. And you know, that it’s just ridiculous. I mean, I heard in Cuba, because they don’t have TV and all the stuff that they don’t have as much body shaming issues, right? Well, hello. You know, that’d be great if we didn’t have women injecting silicones in their butts or some to make it bigger. I mean, I think it’s just really important to just stay focused on really what’s important. Do we have enough food? Do we have a house to live in? Do we have some friends? Not? Am I going to be the richest person on the planet? You know, am I going to be the next Bill Gates or whatever, right? I’m hoping somehow this COVID is going to bring us down to a little more reality of relief. But, you know, 200 years ago, nobody traveled Nobody went anywhere. You know
Victoria Volk 45:03
I know. And isn’t it crazy to think of how far the all the advancements and all of the stuff in 100 years just in the last 100 years, even 7550 years, it’s, it’s just absolutely crazy. It’s like we’re the most spoiled. We’re the most spoiled generation, but we’re probably in a lot of ways, the most miserable and it comes back to like what you said, it’s like you can have all this stuff. But what what is enriching your life experiences? deep conversation? deep connection? You know, and we can experience that if we don’t address the stuff that’s like, lurking in us.
Stephanie Cerins 45:46
Exactly. And, and at least nowadays, we have enough time to explore some of it. I think, before life was so hard that you just, you know, I can’t even imagine having six kids and women had no rights use that as much rights as the dog, right. I mean, really, just not that long ago. You know, being grateful for everything’s really safe to me, I swear that little piece of advice, just if even if I’m grateful that I’m late, because if I was any earlier, maybe I would have gotten a terrible car crash, right. I mean, I’m really good at making it I’ll make good stories, instead of bad stories, we need to have a running well, it’s gonna work out terrible and everything’s in bad. It’s always gonna work out the best for me. I have environmental illnesses. So I have a mask from that from for bicycle riding from Europe, that sometimes I wanted to wear, because I’m carrying us and stuff, I burp and I don’t feel good. And my husband’s an artist and we do outside shows sometimes where there’s more traffic than my body is comfortable with. So are like at the end, the end, I’d put my mask on because there’s so much cars going by in the exhaust just from the cars will make me burp. And so so now the whole world is wearing a mask so I can wear my mask more. See, it always works out all the best for me like, and I make up silly, ridiculous stories like that. Because it’s no more ridiculous and said, Oh my god, nothing’s gonna work and I’m not gonna have any money and oh my god, and nobody’s gonna love me and I’m gonna be alone forever. Right? Like, it’s just a story. So just make up a better story, right? Abraham Hicks. She’s like, just pick the next better feeling thought and what if your depression than rage is better than depression? Well, how great is that to hear? Oh, right. Well, I’m upset.
Victoria Volk 47:34
Well, rage can be a very good motivator to anger is a very good motivator.
Stephanie Cerins 47:39
It is the house gets very clean if I’m
Victoria Volk 47:44
I am the same way. Lady mom clean house. So we got to channel it. Yeah. Right. You might as well channel and pour it out and get rid of it and do something productive with it. Right?
Stephanie Cerins 47:57
No top and one uses a lot of braid.
Victoria Volk 48:01
Yeah. No, I love that I find myself the same thing like making up stories. If someone like the checkout person, if they’re rude to me, or whatever, I’m pretty good at making up stories. Well, you gave a little piece of advice there about gratitude. But is there anything else that you would share with someone today who may be kind of where you were in that in between where you’re just kind of on the cusp of this awareness of how much better life could be and how much sweeter life could be?
Stephanie Cerins 48:32
I think it’s just be gentle with yourself while you’re going through anything. And to not were so dramatic Oh, right. Like, I’m gonna die or like me wanting to die as a 16 year old, 17 year old, because I’m so enraged that my dad left me here, right, and I missed out on all kinds of fun, and trauma in life. You know, and understanding. And so to just, you know, be to be patient with yourself and to be gentle with yourself and to don’t expect ourselves to know so much. I mean, it’s not like, you know, you don’t get a course in life when you’re born. It’s like, like, we learned to talk, but we can’t read. That’s kind of how life is right? You don’t just get thrown into things, right? Like, you don’t have to have a training class to have a baby, right? You can just get pregnant when you’re 12 or whatever, you have a period and we get pregnant. It’s like, oh, oh, that happened. I mean, I’m sure that’s what my dad was like, how would I get a baby? You’re a kid and me. That’s how it happened. Like really? He was pretty oblivious. My dad who at all right, like, and I think that’s how a lot of people go through life was just there didn’t make choices. It just happened to him. Right. And so I think by me choosing that I didn’t want to have kids that started a whole bunch of changes. cuz then whatever we decide in life, one of my friends, she wanted to have six kids. I was like, wow, okay, and she did it. And I was like, Wow. All right. And then she’s dealing with that which she’s created. Right? And is that was a hard one.
Victoria Volk 50:16
Yeah, I just had with teenagers too. I have three teenagers and talking to them about choices and how choices every choice, every single choice that you make has a consequence.
Stephanie Cerins 50:29
And every thought you think has a consequence? And we’re not told that in school, right? We’re not, right. It’s really what we think creates our actions and our beliefs. And that’s your life, right? And so just how can we help each other to to be more gentle, and I could have a boyfriend, my dad died? It’s like, oh, well, that’s one thing to be grateful about. I could have a boyfriend because he would have killed any boyfriend that came around, right? And he wouldn’t be so mean, I would have never got a boyfriend. That’s what I remember thinking that well, at least I could get a boyfriend. Now,
Victoria Volk 50:59
Let me ask you this, because it kind of circles back to the whole idea that, you know, your thoughts are important and have consequences and thoughts become things. And so what about this idea of life is hard? I want to challenge you on that, that, isn’t that a belief? That life is hard? Or is it that we make it hard?
Stephanie Cerins 51:21
Well, I think for me, the day that I read that, and how it resonated is that I sort of looked at, like how I how I thought was everybody else was having an easy time when it was just hard for me. But when I read that, and that helped me have an understanding that, oh, life’s just hard sometimes. Not that. And I do think that sometimes like this heart, I mean, to get up every day and chop wood and carry water. And I mean, could you imagine growing food, and then the locusts come and like you didn’t have a grocery store with everything just right up the street, like we’re really I mean, it’s pretty easy for us, really, a lot of us, we don’t have a lot of hardships. And in that our past families have had to do like, if you didn’t grow the garden, really you didn’t eat, you know, and that kind of thing. And or, you know, you got to go kill the animal and tan the hide. And so you could wear something right.
Victoria Volk 52:15
And that was on top of the grief, they already had to write, though. So you know, a lot of those conveniences of life take away a lot of the grief that will never hopefully, God willing, that we never experience right? Or that we never feel personally,
Stephanie Cerins 52:33
Yes, that we have a lot of comfort. When then I sometimes when you have a hard thing, sometimes you learn something, but it’s still balance, and you still got to have a support system. And I sometimes wonder if with all the margin, because I don’t have to have someone with me, right? Our independence makes us more sort of honoree and individual, right? If it’s if I don’t have to grow the garden and do this and the chickens and kill something in, you know, and has sit around having a sewing circle so we can make a quilt and faster than 25 years, we’ll all work on a quilt and then we’ll make one and we’ll make one for you. And we all make a quilt right. And that’s how we used to do things all together more. Right. But with the advent of petroleum, petroleum, there’s so much work that we don’t have to do, right, it takes the holes, it does lots of things, and makes our life easier. And then the food, right. And that’s hard because people are eating such crappy food. They don’t even have no energy. I mean, 200 years ago, guys cut down trees as big as my house with a saw with one guy on each end. Right? Now, we got to have a bigger truck because the guy can’t even lift the garbage can, right. I mean, it’s so
Victoria Volk 53:49
You bring out so many interesting perspectives. And it really does just, it just really brings up for me that we used to do so much more with community like it was everything was done, because you couldn’t I think it’s really what this message, what it comes down to is that life was done with others used to be done with others, and so much and I think that’s what the advancements perhaps have been a contributing factor to this isolation that we experienced, because even if they didn’t talk about grief, or it wasn’t something that but you know what, honestly, like, when someone died back, then way back then they would have their loved one with them for days and take pictures after they died with them. So everything grief was even done differently. Yeah. And so I think that with advancements the advancements have come have brought consequences, right. And I think it’s this, like you said this more isolating society.
Stephanie Cerins 55:00
Were separated from death more, they come and hurry up and take away the body and hurry out. Instead of you know, you used to wash the body yourself and then bury it in the backyard, right or whatever. And so with the distances and all the modernization and that we don’t even kill animals to eat anymore. Some guy does it in the slaughterhouse and has to kill all the animals for everybody, instead of everybody just getting a little death on you, right?
Victoria Volk 55:29
That’s true. That’s very true.
Stephanie Cerins 55:32
And so I think that this, we’ve have a sterilization of our life more because of the modernization and the withdrawing of the, from people in grief and everything, right? And we think it’s supposed to be so easy, but no, gosh, Everybody’s hungry. I’m trying to grow a garden here. And you know, you plant the seed, and you got this little baby embryonic plant, right, like it’s in the womb, right? It’s a little baby plant, just one shoe. Everybody eats that little chute like to defend that little chute. So you could grow it and eat it like and so I’m feel very lucky to be able to understand the circle of life a little bit more than if I can help someone else understand it more that way. Because I don’t think we die when I did a meditation when my mom had said if she wanted to Reiki healing when she was getting ready to go, and she said she did and I was very shocked. And so I went down by to a beach by where we lived, and just did a little meditation. And in that meditation, first me and my mom, I, I saw her, we saw her body in the bed of the hospital bed, right? And we were just kind of like, I guess hovering in the air. I couldn’t see us. But we were we were like drone view of the bed, the hospital a better overview. And she was like a big giant raisin. I was like, Oh, Mom, I think your body’s getting all tired and whistled up. That’s not looking too good, is it? No, it’s not looking too good, isn’t it? And then the next thing in my meditation, we went and we we were walking up a path and it was very glowy at the end of the path. And as we got closer to the light, the glowing mass it individualized more. And it was like, there was grandpa and not as not a vision. But the feeling right there was Dad and Grandpa and Gordy and Alan and all these people waiting for my mom, right? And then I took my mom’s hand and passed it, but it felt like to my dad. And so after that visualization, I’m not scared of death, like at all. It’s just, we’re just light beings and we got these bodies. And we’ve just go back to the big ball blade. And there’s going to be people there waiting, and we’re never alone.
Victoria Volk 57:49
So would you say that’s what grief has taught you?
Stephanie Cerins 57:52
Yep, that we’re never alone. It asking you shall receive. It’s really true. If you just ask and you don’t expect it to happen. But don’t put a time limit on it. And don’t worry about it. Right, but then just trust and do your best. Because Because we’re all just here for helping into into be compassionate with one another if we can.
Victoria Volk 58:19
So you mentioned Reiki are you You are a Reiki practitioner Reiki master.
Stephanie Cerins 58:24
Yeah yeah, I do Reiki and reflexology simultaneously on a person so I do the energy body and the physical body. And most of the time my clients are falling asleep on the table and I don’t understand that matches around their head. And it’s like, I don’t know if I would be that. But I feel grateful that to be and then I write affirmations, personalized affirmations for people to help them just like a little short story, right? That’s something good because I have friends that just ad nauseam berate themselves, right and So can’t we nauseam cheer ourselves up until I did something good. I did the dishes today. I didn’t even have to cuss or nothing while I did it or, you know,
Victoria Volk 59:07
All of the healing that you’ve kind of experienced in the last 1518 20 years or so. That has led to you like would you say that Reiki found you because that’s most Reiki practitioners I know say that Reiki found them.
Stephanie Cerins 59:21
I’ve done reflexology since I was a teenager because I learned it to help my mom the from the reflexologist that she used to take us to and he trained me to help my mom because she was such a mess and then but when my ex husband he used to have migraines, so I would sit and do the reflexology. But I but before I even knew Reiki I visualized having like come in my head and go out my hands. God’s like God’s love whatever. Good orderly direction I would say I don’t know why Jeffrey has a headache. But you know why Jeffrey has a headache. God, whatever good orderly direction and Jeffrey’s body knows why Jeffrey has a headache. So maybe I could Just like give them some energy and you guys can figure it out right? And not take responsibility or anything for the energy. And then I read a Reiki book and I thought I’ve been doing Reiki already. So then I got a break the I became a Reiki Master so I could actually learn what I was trying to do more. That’s how I felt. So yeah, I think Reiki definitely better. I it’s just like a mom, when your mom like kisses your booboo. That’s Reiki, right? It’s just like, offering good loving energy from your heart. Right? But if you learn how to do it, well, then you can do it better.
Victoria Volk 1:00:38
It seems like to me, you’ve kind of found the essence of who you are, with your healing, right? You’ve come back to the essence of who you are, what you were doing with the animals and caring for the animals and helping them transition when it was their time. And in doing that, for those that you loved along the way, right? Like, that’s really the essence. It’s and I think in grief, and when we’re so far in it, and deep in it, we can’t connect to that part of ourselves. It’s really difficult to
Stephanie Cerins 1:01:08
No. Yeah, cuz we’re so overcome with the emotions, and we’re feeling so alone and everything and because we’ve decided, oh, that person left and they did it. I mean, I thought, you know, my dad died because of me. And I felt guilty for it. But it wasn’t didn’t have anything to do with me, it had to do with all the thoughts he thought and the over only the overwhelm in his mind that he felt too alone. And he felt overwhelmed, or whatever it was, that caused him to pick up a bottle every day, right. And besides working in a very toxic place where they have you washed your car when you leave, but you didn’t hose the shit out of your lungs, you know, and wow, up your skin and working at a pulp mill was not very healthy, right. And meanwhile, I know lots of guys that lived in retired and I even cleaned house for a guy that was over 80 years old who worked in a pulp mill forever. So it didn’t have to kill you either the chemicals, right? It’s just how you perceive things and think and
Victoria Volk 1:02:05
Is there anything else that you would like to share,
Stephanie Cerins 1:02:08
I just feel very blessed to be a part of your podcast and to have a chance to share my story and maybe to wrap a person and help them find their, their beauty in their own self and to not be affected so much by the fears and the anglers have their families and whoever raised them and taught them the world how it should be.
Victoria Volk 1:02:29
Pave your own path, right? Yeah,
Stephanie Cerins 1:02:32
So don’t worry about what other people think and make up your own silly story and just do it. I’m the happiness enhancer, right? I just made that shit up, you know, but I did that. But last year, I did take I love Heart Math, the company Heart Math. And so I’m a Heart Math certified Heart Math mentor to help me be able to help people get in touch with their heart and to breathe, actually breathe emotions through their heart. Right? And to be able to maintain heart coherence more often.
Victoria Volk 1:03:04
Oh, can you talk a little bit more about that?
Stephanie Cerins 1:03:07
Oh, sure. I love Heart Math, because Heart Math is the study that that our heart really is more powerful than our brain. Because in our society, we’re told our brains more powerful than our heart. When in when in the meantime, what’s the first thing that performs in the human body in the womb? The heart? When does it start beating at 18 to 21 days? Do we have a brain? No, we don’t even have a brain. Right when our heart starts beating, right, and that we have a brain actually, there’s brain neurons in our heart. There’s Breton neurons in your stomach, you have the same kind of neurons in your brain, in your heart in your stomach, to help us to be able to connect with each other. I mean, we have a mirror neurons in our brain so that if someone’s crying, we feel empathy, because that person needs us to feel empathy, right? And so that we can connect and that they’ve proven now that there’s an aura, like they can measure this auric field that goes about isn’t it interesting, about six feet, most people’s heart energy goes about six feet, and then I’m fine that we’re supposed to distance six feet. So I thought that was interesting. And that just I love Heart Math, because it proves that hearts more important than brain. And I think that if that’s true, and I think in our society that’s totally not emphasize that.
Victoria Volk 1:04:34
I would 100% agree with you. And I’m very curious about that. And so I will definitely be looking into that.
Stephanie Cerins 1:04:41
Yeah, it’s heartmath.org or heartmath.com. And the.org has all the scientific studies and stuff and you can go down the wells and the.com is a little bit more than reaching out and promoting themselves and stuff. like that, but it’s been going for about, I don’t know, 20 or 30 years Heart Math. And then oh, if you haven’t know, you’re gonna love Heart Math, if you haven’t heard of it, oh, no, I’ve never heard of it. And so and so I paid $1,400. So I could become a mentor. And that allows me to be able to train about 10 people, but I think I’m gonna go for, I don’t know when, but I’ll go and get the next one. So I can do like 100 people, and then I could have, but not that it really matters that I can really get that many people together right now. Anyway, still, so. But yeah, just to Yeah, HeartMath is so fascinating. And it really took and it’s hard like to actually generate a new baby, you got a thing you stick on your ear, and it measures like your heart coherence. And it’s not that easy to keep the feeling of love going not thinking about love, but to actually emanate a feeling. And to get that heart, there’s a, it can turn red, or a green or blue. And to keep it green, which means they’re all like this, you know, a monk, I would say or whatever, right? And, and so it’s fascinating to, I can generate a real good for about five or 10 minutes, and then it seems like it starts dropping off. And so I haven’t worked with it as much as I could. But I would like to someday be able to generate that for 20 minutes or half an hour or, you know, just constant if it would stay green. But I can get it to go totally green for like 10 or 15 minutes. And then you know, your mind starts to wander and you get, you know, think about the laundry or something.
Victoria Volk 1:06:40
And I think that really makes me think of gratitude, right, like gratitude and you know, loving what is good in your life. And giving that appreciation is kind of up there with love, you know. So,
Stephanie Cerins 1:06:54
The more the more we can you know, the more you can just focus on whatever we can do not not everything that we can’t take anything. You know, I can’t do nothing about what the government’s do nothing about what anybody does except me. And what can I do? Well, I can at least try to at least I can be generous in kind no matter what anybody else does. And then I know someone’s generous and kind and then I’ll run into my
Victoria Volk 1:07:19
Laptop. So where can people find you, I know, You’ve written a couple books,
Stephanie Cerins 1:07:24
My one book healing my heart after a loss is on Amazon. And I hope to get my other one on Amazon pretty soon, because I published it through a different way the first time in 2014 in 2017. And so I just have to redo it in Word. And so it’s taken a little while and but anyway, so on, on Amazon and then healing my heart after a loss just comes up if you type it in the search bar, and then the and I’d like to send you a book, I’d like to email you a book. I mean, I’d like to mail you a hard copy if you want to email me or address. Because I feel blessed that to have this opportunity to share my story and trip the planet. Because that’s my goal to bring tear to the planet or cheer up the people of planet Earth or because it’s we all just take it too serious and happiness is healthy. That’s my website. And I’ve been writing I have a blog that I’ve been writing, it’ll be my 10 year anniversary, I just thought of now when we were talking that my blog is 10 years old this year. And I’ve written affirmations. And when I first started it in 2012, I was writing affirmations every day, just like a paragraph long affirmation to try to cheer people up because you and that’s why I made this a coloring book book. Like you color you read in color, because then if you just read this one that’s not going to change your life. Because you have to read something over and over, there’s a book called The greatest salesman, and it says in there Augmentee know, tells you to read it in the morning, read it in the afternoon, and then read it out loud each chapter, you read the little chapter two or three pages in the morning, the afternoon and then out loud at night. And you do it for a whole month. And then so it takes 10 months to get through that book if you really do what it says. But it’s really like one of the things is I laugh at myself and the world laughs with me and I take myself you know, and I don’t make a big deal of things and just really it was a long time ago. I can’t even remember all 10 of them anymore, right? But I will laugh at myself. I live this day as if it is my last you know just lots of things to you know, so that you don’t waste your life you take the moments that you get.
Victoria Volk 1:09:42
I will put all of the links to everything you mentioned in the show notes. And you I thank you so much for this rich conversation and for you sharing your story with my listeners today.
Stephanie Cerins 1:09:55
I feel very blessed and thanks for having me. It’s they’re lovely and and I like you as much as your voice, I thought she was a good boy. So I’m gonna reach out to her. So,
Victoria Volk 1:10:05
I love that. Thank you so much. And remember, when you unleash your heart you unleash your life. Much love, from my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.
Cancer, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Widowhood |
Michele Neff Hernandez | The Soaring Spirit of a Widow and Fatherless Daughter
SHOW NOTES SUMMARY:
In this week’s episode, Michele of @soaringspiritsintl and a 2021 Top 10 CNN Hero, shares her story about the challenges of blending a family, but then enduring a devastating loss and grieving as a blended family.
But because grief is cumulative and cumulatively negative, a previous divorce, followed by the sudden death of her spouse, then the death of her father, taught her so much more about what it means to grieve well.
It’s hard enough to be a widow and raise your own children, but few talk about the challenges of grieving with the children you raised as your own with a spouse who is no longer living.
By the time her father’s health was declining and he was put into hospice care, Michele had been around the grief block and was able to support her mother in a way she had never anticipated. And, the loss of her father, starkly different than the recent loss of her spouse before his passing, opened her up to have meaningful conversations at the end of his life that she still treasures today.
Grief has been the catalyst for what was initially going to be a book but later morphed into a movement in what is called Soaring Spirits Camp Widow which takes place in several locations around the United States and now in Australia, too.
What is your grief trying to open you up to receiving? Michele allowed her heart to soar in the wake of her devastating losses. Let this episode inspire hope and instill the understanding that grief is what we make of it.
We can allow grief to destroy our spirit, or we can allow it to aid us to transform our suffering and soar.
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Victoria Volk 0:00
Hi this is Victoria of theunleashedheart.com and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss as a 30 plus year graver in advanced Grief Recovery methods specialist. I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non gravers like spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with yours and this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather? Let’s get started. Thank you for tuning in to grieving voices. I’m your host Victoria Volk. And today my guest with me here is Michelle Neff Hernandez. She is the founder and chief executive officer of soaring spirits International, a nonprofit organization providing peer support programming for widowed people worldwide. Michelle is the author of different after you rediscovering yourself after grief or trauma, and is set for publication by New World library in February of 2020. To her passion for supporting widowed people in the power of integration feels her presentations in her community activism. She is also one of the top 10 cnn 2021 Heroes of the year for the work that you’ve been doing, and also for the impact. So thank you so much for being here and for the work that you do. So needed.
Michele Neff Hernandez 1:50
It’s a pleasure. And I am Thank you, thank you for those kind words.
Victoria Volk 1:53
What was your life like before all of this?
Michele Neff Hernandez 1:59
So different. Which is is a part of the reason why the title of the book is different. After you I was a personal trainer, I owned my own personal training company. And I was parenting a blended family of six, my late husband Philip, and was just actually in the process of building his own air conditioning and heating business. And so we were both self employed. And we had a combination of six kids together, he had three from his previous relationship that were teenagers, and I had three from my previous marriage where my oldest was when we got together. My oldest was eight. So we had three littles we call them and three older ones. And you can imagine blending a family of six, I am actually the oldest of southern children. So it wasn’t as foreign to me as it might have been to other people. But we lived a very active lifestyle. He was really he was a truck Coach and an athlete. And so we shared kind of this passion for all things like and then we were sharing this big, crazy wild family as well.
Victoria Volk 3:09
Wow can you speak to a little bit about, like, I don’t know what that’s maybe the possible grief that even just a blended family and trying to navigate the relationships among the children. You don’t have to go into detail or anything. But just with those first few years, or maybe like,
Michele Neff Hernandez 3:26
I’m so glad you asked that because one of the one of the key messages in the book is about integration. And it’s about taking all of the difficult things that have happened in our lives and technology, what we grieve about, what about what that experience has brought to us. And then also taking those things that we’ve learned from moving through that experience to help us with other experiences. So when I got divorced, I was crushed. I had I got married at 20 years old, I was only 20. And I thought it was forever. And I was really just I went through a really difficult period of disillusionment when my marriage ended. But it wasn’t a choice that I would have made but ultimately participated in. And so here I was, with three little kids and feeling like I had to recreate my life and I didn’t want to, I went through an angry divorce kind of attitude for a little while and then finally sort of settled into knowing that I needed to do something different and right about that time, Phillip Hernandez walked into my life on a track actually. And again, he had had his own experience of not having the relationship that he started very early in his life, work out the way he had hoped. And so when we came together, we came with two very different parenting styles. We came with different loss experiences around how our relationships ended. And it was hard work. And I think I never really thought that the work that I did around I divorce or the blending of the family that Phil and I then sort of came into was going to be useful in any way. But I will tell you that after he died, though I didn’t want to single parent, I knew that I was capable of single parenting because I already had. And I kind of leaned into the lessons that I learned while we were bonding or what it’s like to really honor and recognize the different needs, because you can imagine, right, there’s eight of us. And everybody had needed something different. They needed something different from each other, they needed something different from each of us as parents, they needed a different thing from each of us as a as a perinatal unit. And so when I’ve told people wanting that family is one of the hardest things I’ve ever done. Because the unique pole and push of what people need from this family experience less so tough. And we wrestled, I will say for sure it was difficult. What we kept coming back to was that we really loved our time together. And we wanted to make that work. And so I tell people, make sure you have dates. Because if you can’t remember why you chose your partner. I mean, I think that’s true for every relationship, but particularly if you’re blending a family because you have to remember what brought you together during the times when it’s really difficult to find a path forward. And I had heard every member who told me that at some point, somebody said something like takes really about five years, and I was thinking to myself, No way. No way is it going to take five years to make this family feel like a family. And really, he died after five years and three months. And I can tell you that we had really kind of hit our stride. Like we felt like a family. And it wasn’t that it was easy. But I don’t think any family is really easy. But it did feel like we were a family for him to die. Right at that time. It felt like we were robbed of what might have been, I think,
Victoria Volk 7:03
And the kids too, because I’m sure that they settled into this new life and new family unit. And
Michele Neff Hernandez 7:13
Yeah, and without him, we sort of ended up in two different camps of trying to figure out how to grieve Him. And so that definitely was another was we talk a lot about in the grief world about secondary losses. And in the early stages, I was a primary loss, but going forward in my life has remained a secondary loss, which is they really needed to find their own way. And, and in a lot of ways that didn’t include me. And I needed to be okay with that, even though I wasn’t. And so that’s been another piece for all of us, I’m sure. But for certainly for my three kids and myself, that was another piece of what we had to make our way through. After he died. He was the linchpin, right?
Victoria Volk 7:55
Well, and even the relationships that kids had with his kids. Yeah, for sure. Layers and layers and layers of loss and
Michele Neff Hernandez 8:02
So many layers. Yeah. And I feel like that’s, that’s a part of what has brought the deepest lesson. So it’s that these differing layers of loss, I think, I never went feel died, I had never grieved anyone very close to me, my grandfather died. But I, it was at a time in my life where, you know, that’s sort of not exactly expected, but it was it didn’t affect me personally in the same way. And so I never really had an adult brief experience. And I think my initial thought was be the hardest part is going to be the early parts. What I learned was that the harder part was learning to live without him physically present, and figuring out how I maintain a connection with him and how we as a family navigate what each of us needed. Because once again, we’re in a place right where there are seven of us and the seven of us all need something different in order to move through our grief experience. And I think as a parent, that was the hardest part was I was living my own experience. And then in addition, each of the kids was gonna be theirs. And as we know, for children, no, they process at the age they are and have to keep reprocessing at every new age. And so I just felt like it was an eternal grief wave that kept coming from every different direction, each different kidney and a different thing. And as they understood it differently, being pulled back into that it really was an evolution for us of walking through each new step. And for me as a parent, that was I think the hardest part was just knowing that each one of them were never done grieving. In my opinion, I think it’s just a way of life and it becomes a part of who you are. But for kids in particular with the new understandings that comment different ages, there’s a deep processing that can happen at each different age. And I think I had a sense of that initially, just because as an adult like I thought he’s not going to be present for any of this kid’s weddings, he’s not going to be present for any of our children’s weddings. And so, when my daughter got married a couple of years ago, we found ways to honor him. It had been, he had probably been dead 13 years, I think, yeah, it’ll be 30, it would have been 13, I’ll be 60. Now they’ve been married for three. So he’d been dead for 13 years. And, and all of us felt the absence of him, let’s suspend sort of our ongoing understanding of what it’s like, when you live with grief.
Victoria Volk 10:29
I understand that deeply, too. I was a child Griever, my dad passed away when I was eight. And so I can speak to that, that we grow with our grief, like our grief changes with us every phase of our life and manifests differently to at different phases as well, if it’s unprocessed and on undealt with or not looked at. Yeah,
Michele Neff Hernandez 10:53
Well, and we talked to you and a tiny bit before we began about my name, and my dad just died will be a year coming up in April. And she was a key part of my life and a key part of my process. And I’m recovering from my grief. And I really wanted his name to be on any book that I would publish. And so right about the time that I decided that I wanted to write a book, I returned my maiden name to my name in order to be able to make sure that, that any book that I would eventually publish would have my dad’s name on it. And so it has been just wonderfully bittersweet for him to have been, he was able to be a process of the writing. He knew that I that I had gotten a publisher, he knew the book was coming before he died, he got to hear the title. And there were just a lot of pieces of it that he was able to participate in, but having his name on the book made a big difference to me. And that’s something acknowledging that that desire to continue to have a connection with the people we love goes on and on, no matter how old we are, or what our grief experience, where it may take us. I feel like that ongoing connection is such an important piece.
Victoria Volk 12:12
Even in unloving relationships, the relationship still continues after the person passes away living or dead. I mean, those relate, or you have relationship with people, and D, have you looked back then I’m sure you have. But when you father passed away, which I’m sorry, during COVID, were you able to be with him?
Michele Neff Hernandez 12:32
We were so fortunate, I mean, and and to speak to how my past grief experience has influenced my current grief experience. That’s what I was getting on? Yeah, yeah, for sure. Well, I mean, and again, all this while that he’s dying, and I’m writing about this. And so we’re writing about the power of integration, and how allowing myself to be changed by what I experienced my grief experience with film led me to understand better the tools that I that I used to survive that and those exact tools were such a gift to my family. So as I said, I’m one of seven, and my dad decided that he wanted to access hospice care. And we were able for six months, during COVID, to take care of him all of a sudden of us. And so we ended up with an incredibly beautiful death experience, especially with the work I do. We’ve participated in providing care and support and resources for COVID, widowed people since the beginning of the pandemic. And so I’ve heard the stories that are heartbreaking, and understand very deeply how fortunate we are to have been able to care for him at home, right to the end of his life. It was some of the hardest work I’ve ever done, for sure. But because of my grief experience, I was able to kind of lean into it in a different way. And my husband was killed in a cycling accident. So there was no opportunity to care for him, there was no opportunity to say everything you might want to say. And because of that I understood how valuable that was with my dad. And we didn’t leave anything unsaid. And I again, I recognize that that’s a gift of both the relationship we have the family dynamic that we are fortunate to have built and and maintained. So there’s a lot of pieces there right now. But you know, ultimately, our ability to be present was impacted by my grief experience for sure.
Victoria Volk 14:36
Well, you bring up a good point, just in sharing them. Thank you for sharing because it isn’t that way for so many people. And so we can’t assume that people have it, the same way we do or the same type of even relationship that we do with our loved ones. And so assumptions really can create some hurtful comments.
Michele Neff Hernandez 14:59
And I I think that because I’ve worked with so many widowed people over my career, I just have a breadth of stories and and what I always feel is what I love about community for grieving people is that it gives you the scope of experience, right. So you may not have had a great relationship with your father, and you may not have a great relationship with your siblings. And maybe you weren’t even able to be present for your, your father’s death. And so that’s one that’s one side. And then there’s the story I just told, and then there’s so many in between. And it helps us to know that there are so many different ways that we live in relationship, and that the way we live in relationship is going to impact how we grieve, as well as every situation related to how our person died. And so I value that about our community, because it gives you this sense of, there isn’t one way to do this, there can’t be because there’s no one situation. And so every situation is going to be influenced by relationships, by what we know about breed by what we’ve experienced in the past. And that’s the key work of integration is being able to allow ourselves that I feel like there’s such power in that. And that became because of that belief, the focus of my vote.
Victoria Volk 16:11
So do you feel the first step for many people who find themselves in a situation of loss with not knowing where to go or where to turn to? The first thing to do is to look for support?
Michele Neff Hernandez 16:24
I do, and a recognize in saying that, but some people will say, I don’t have any, there just isn’t it because again, some of us are walking this route alone. But what I know for sure, is that people who have access can find that access to a community will be able to understand that there are other it’s lonely and isolated, and grief is isolating all on its own. Even if you have the best possible support. We’ve all heard stories of people saying I was in a room with 100 people. And I felt because my grief isolated me in such a way that I didn’t feel connected to anybody else around. And so that is true already in the best of circumstances. And when people are struggling on their own. And using my Dad’s experience, just as one example, I kept saying to my siblings, I don’t know how we when we when one of us would be on vacation or need a break for whatever reason, or have something that had to do. We were like, who’s going to cover and there were seven of us, including my mum eight. And so knowing widowed people who have done that, caregiving for years on their own, with literally no one else made me just so hyper aware of how hard that would speak for them. Because it was hard for us. And there were many, many hands to do to work. And so when you think the not single person is thinking, how am I supposed to find support, when I’m just overcome with five years worth of caregiving, I’m exhausted, and I don’t know where to turn. And there wasn’t anybody to help me when my person is dying. And now my person has done the work of soaring spirits provides that kind of for widowed people virtually and in person so that they can connect in whatever ways feel right for them. And my first sense whenever anyone’s grieving is to look for a community of support. Look for other people who are grieving the way you are. Social media, while it has all of its challenges has really allowed us to be able to find groups. And I’ll say, it’s also really important to make sure you find a group that fills you up and doesn’t drain you because certainly the tenor of your group makes a difference. But finding a group and a group could be one. It could be two, I’m not, it doesn’t need to be a community of 1000s. It could be just a community of one or two. But connecting with one or two people who are also agreed, just helps normalize the experience all that stuff you yourself and you are talking about in your brain. It’s helpful to get that out and have someone else say that makes sense to me. It helps remove that sense of am I losing my mind, this makes me feel out of control. There’s so many things there that can be normalized, just by knowing someone else had the same feeling.
Victoria Volk 19:12
You said a key phrase earlier and you said, you’re allowing yourself to be changed. And I think for so many of us, Grievers for me personally knowing it intimately and acutely well and how it changed throughout my life. It’s why my art for my podcast is me sitting on an island with a megaphone, because you feel like you’re just you want to scream to the world and nobody’s listening and you’re screaming on the ends. That’s why my art is what it is because that’s that’s how you feel as a griever so often sure, yeah.
Michele Neff Hernandez 19:50
And that’s especially when there isn’t anyone to validate. And for me, that’s the that’s the beauty of the community piece. But coming back to the chain Just I think one of the most harmful things that Grievers can do to themselves is set going back to normal as the bowl, I need to get back to normal, I can just get back to normal, then that means that grief hasn’t won, I’ve made my way through. But the reality is that we are absolutely changed. And every time we pretend that we aren’t, we’re fighting ourselves, and we’re setting ourselves up for failure, because we keep telling ourselves when Trump’s gonna get back to normal. But life isn’t, what was normal can’t ever be, especially for someone who’s grieving, but really, for anyone who’s lived through a traumatic experience. And I like to bring it down to this just one simple thing, which is you can’t unknow what the things that that you’ve learned, whatever day your tragic experience happened, you will never forget those. And so just by virtue of that one single thing, things can never be the same as they were before. And then here we are fighting to make it the same, feel the same be the same person that I was before whatever happened for us, it’s a grief before my person died, I want to go back to that version of me, that version of you cannot be returned to. And so then then what does that mean? I’ve heard so many greeting people say all the while I’m not as good as I used to be. I’m less than because of my grief experience. And there was a time in my life where I was parenting six kids, I was working two jobs. I was building a community for widowed people. I was trying to write a book, I was maintaining a relationship with my family and friends. And all I wanted was feedback to the other girl who could manage all the things better. And so because it didn’t matter that I was doing all those things, if I couldn’t wreck that this person that was surviving, this horrible thing was valuable, it wouldn’t have mattered who else told me it’s valuable, didn’t matter what number of things that I did, nothing mattered until I decided that this new person that was born from the experience I lived through was not. And so I needed to allow that change, I needed to allow myself to be changed. And that’s been such a critical part of my personal growth. But also the ways in which I’ve been able to support other widowed people have been the crux of that, which is being able to find the value itself you are now.
Victoria Volk 22:27
So what did that look like for you? early on? When you mean you were starting to build that community and you were doing all these things? But what was what was helping you I know you were reaching out to other widows to better understand and in build community. But what did healing look like for you? What was that process?
Michele Neff Hernandez 22:47
I think that the key for me, was coming to a place where I realized that I it couldn’t be the same as it was before. And I think the key is being able to allow yourself to be broken. And that was the thing I wanted to do would be broken at all costs. If I could just not be broken. That’d be good. And so my constant need, I’ll give you one quick example from the book. I was going to run a marathon when I turned 40. And Phil and I were going to do it together. So we had set this goal, he ran a marathon. And he wanted and he was like, Okay, it’s going to be your turn. I was like not right now. How about when I turned 40, we’ll go white, and we’ll run a marathon and you can be my support person. Great. That was the goal. Then he died when I was 35. So I’d five years. And I thought, okay, that’s still going to be something I must do. In order to prove that I’m not broken, I have to meet every goal that we set prior to his death. So I start training for this marathon, I’m in trouble. I am struggle, I have all of those things that I just listed going on. And now I’m also trying to run a marathon. And by myself, I don’t have the support that I did, then I don’t have anybody else in my life who lives close enough to me to be able to support this marathon thing that I’m doing. And so just keep doing it. Keep doing it. One day I went 80 miles, I run nine miles through three cities, I get to the third city, I’m turning around because it’s turnaround route. And I start crying. I’m like, I have to run all the way back. And I thought, why am I and the reason was because I didn’t want to be. And I thought that if I did not meet every single one of those goals. I’m literally nine miles from home. I can’t there’s no one to call. I can’t call someone and say come and get me. I have to run back. So I run back those nine miles because walking was just going to take longer. And I got home and I thought I mean I’m just not doing and freeing myself from the judgment. I ended up I had the nerve and I was training for the LA Marathon because I had decided I’m not going to also travel so I’ll just run the same one he ran. I watched it on TV from the couch. And I thought this was the right choice. Assuming, and that was just the beginning of understanding, okay, you don’t have to do all that you can be different. That doesn’t mean you’re out valuable, it doesn’t mean. And ultimately, to end that story, it even didn’t mean that I wasn’t going to run a marathon. Three years later, my daughter decided that she loves running and through a crazy situation of one thing after another, she and I ran a marathon together. And so it was that it was, I don’t know that that would have been possible, I hadn’t been able to release myself from that first spirit on, because I’m telling you, it would have been miserable, I would have been miserable. And I probably would have been like, I’m never doing that again. Instead, I said to myself, I don’t have to do this, I’m only doing it to prove it to myself, no one else cares. And allowing, and even if they do, I can’t, I don’t want to, it’s been in a position where you’re able to say, I can free myself from having to be who I used to be in the exact same fashion course, there’s going to be a lot of things that are gonna be similar about the person you were before your person, your grieving died, and the person you are today. But there also might be some differences. And allowing for those differences was the beginning of me understanding the value of accepting that when we’re broken, when we can be broken, that means there’s space for healing, for as long as we pretend like we’re not broken. What are we healing from?
Victoria Volk 26:25
So much there? I’m curious, was it just this thought process that you had within yourself this dialogue that you had within yourself? Or did you look to external things to help you process your grief? What I’m getting at is, are some people just built differently as Grievers? Like do you just have this thing in you?
Michele Neff Hernandez 26:47
Well, I mean, I think that’s true, right? Just because we’re different as people. So yes, I think that’s a part partly true about every person. But at the same time I was, you know, this, I was also building that community and hearing story after story. And the thing that people would say to me most often was, When am I going to be back to myself? When am I going to recognize myself again? And so we think the, for me personally, the pairing, the desperation, I heard from other people, when I could clearly see their vote. And so then that was the beginning of understanding, okay, well, if I can clearly see their value, and they’re telling me that they want to be back to the valuable person to use it, then how does that apply to me? And so I think that there was this pairing of coming back to what we talked about, in the early part of the episode, this stand of what you understand, when you’re in community, you get the access to all these different experiences that may or may not be like your own. And I think some of the most valuable ones are the ones that are totally different from yours, because now it’s okay, I have this scope of experience to reference when I’m thinking about and processing my own grief. And so I think for me, personally, the combination of, yes, I am a person who is able to self reflect, I am a person who has had that experience in my lifetime, right. So when we think about how we come to greet and come with experience in our life, and for some of us, that will include self reflection, and for some of us, it will not. And so that will be harder for people who haven’t had that experience before. It also will be one of the gifts of their grief experience if they allow themselves to self reflect. And so each one of our experiences in our lives, whatever they are, the difficult ones seem to have the most impact, right, that we aren’t as impacted. We think by the big beautiful things that happen to us, as we are sometimes by the things that break us. And I think being able to have access to so many people who had been broken in a similar way to me, helped me to sort of see a path forward. It was kind of like if you saw markers all along the road, and it was like, Well, wait a minute, this path seems to be delay. When I look at all of these markers that have been provided by the number of widowed people that I was fortunate to have access to. And I come from a family of community, our family always believed in community. And so again, when we talk about integration, I was integrating the lesson I learned as a child, which was community can be built, and it’s valuable. And because I knew that, I was able to say, Okay, I need a community. That’s what I need. And then building one was both by accident and design, because in the early stages of widowhood in the early stages of grief for anyone, right? We’re all struggling with whatever that early stage looks like my early stage included, please tell me where my people are, because I need them. And that’s something that I learned from my life. And so for people who haven’t had that experience, I think they don’t have that same natural desire to find it. And that’s why I like to talk about it. Because if you don’t have a natural desire to seek community Need, it might not seem valuable to you. But I have met person after person after person who has said, I’m typically not a joiner. I’m an extreme introvert wants nothing to do with people, I don’t really like people. And all of them have said I can’t believe community is because suddenly, there are those markers along the road. And that’s going to be different for each one of us. And the path forward will be slightly different for each one of us. Being able to have some markers makes a difference.
Victoria Volk 30:30
I want to just highlight one thing too, in that you are actually an entrepreneur when you experience this loss. And so I think, when I always tell people like they’re nothing will teach you more about more life lessons than entrepreneurship, motherhood, breeds.
Michele Neff Hernandez 30:49
All of them bringing my age, yes,
Victoria Volk 30:51
your age. And yes, I think just being an entrepreneur, it’s you have this sense of sense of self that maybe a non entrepreneur doesn’t and it on entrepreneurship brings out all of your insecurities, as does motherhood. And so we bring these lessons. And then when grief hits, if we already have some sort of sense of leadership of our lives, or in our lives, I think we naturally will, like you said, like you created that community, you were a leader to create this community.
Michele Neff Hernandez 31:21
I think that is definitely true. And also, we should say, I’m the oldest of seven children. So I’ve been bossing people around since I was born. But I do want to mention, like so many times. And when people hear my end, even if we talked about seeing the years, it’s the same, it’s look, this is what you build, which is true. What I always want Grievers to know is that we each individually have our own path forward. And we’ve lean on, like you said, all of the lessons that we have already learned in our lives. And so because it’s different for each one of us, I’ve had people say things to me like, well, I didn’t do what you did, it doesn’t matter what you do. It matters, how will you give yourself spacing, that’s the key message is being able to allow yourself your unique path. And so those markers on the road for you, when other people community, they’re going to be different. And that’s all going to be influenced by everything you already know, everything you’ve already experienced. And absolutely for me, it’s natural for me to lead. And it’s natural for me to gather people. And so this community came together, because it’s what I needed. And in order, I thought I needed it clearly someone else needs it, too. And so that desire really was to provide that space for other people that it’d be easier for them to find it. And yet, I didn’t really ever think about the fact that people might say, well, you have to do something big with your grief experience. I think what you have to do with your grief experiences, integrate it, and then your life will take you in the direction and sometimes a very new direction. But surprising because when we allow ourselves to be changed, then we can ask new questions. What does this need this need, did not need to run a marathon when I was 40, it didn’t work for this knee, it would definitely have worked. If I feel confident it would have worked for my 35 year old self had my husband stayed alive. And we had planted that together, we would have been very excited about that. But because that was no longer the situation, if I didn’t respond to that change by allowing myself to have what this version of myself needed at the time, then I’ve robbed myself of that growth and that ability to be different. And I needed that I needed to and even still, even those first five years. So think like I feel died when I was 35. That experience was when I was 40. And so I’d already been widowed for five years when I needed to make that choice. And I was still telling myself the story that if I didn’t meet all of the goals that he and I set together, I was failing. And so even five years in with an organization, it was a baby then but it was an organization that was started with events that were being held with standing on front of the stage in front of widowed people talking about my experience still holding myself to a standard that was not good for me.
Victoria Volk 34:01
Did that make you sick?
Michele Neff Hernandez 34:03
It’s funny is that I did some I did some interviews in the early the first year of my grief. My first the the actual idea initially was I was gonna write a book, having interviewed 30 Other widowed people. And so I went on this crazy journey starting when I was four months widowed, to interview people across the country on weekends, because I still had to work and mother and do all the things. But anyways, I got sick after every interview. And it didn’t really realize it until I had finished all the interviews and I was going back to my calendar to write them all in. And every time I looked, I had a paper calendar at that time, every time I looked, I would see that I had rescheduled my appointments after I got back. And not only did that when I’m sick, and I got sick after every single one. And so definitely that physical connection and the thing was that that’s very natural for me, because as a personal trainer, I would train people about how their physical selves were responding to their emotional selves. And so now I’m here I found myself in the reverse of that really being firmly rooted in my emotion, and sometimes forgetting how that was going to play out in my body. And so it was a really interesting lip of story for me as a athlete, and for me as a person who was breathing to really recognize that to see that in action was was, at some point really cool and other points super annoying.
Victoria Volk 35:25
So we just had Valentine’s Day, how did you spend it?
Michele Neff Hernandez 35:29
I am remarried. And I have a lovely husband, who has been so supportive of all of this. And so today is book launch day for me. So yesterday, we celebrated with sushi and an eating in so that we weren’t out with all the people who were lined up hoping to get a table, but it was lovely. And you know, what I tell people, my post actually on social media was about remembering that, while Valentine say seems to always be focused on on the romantic love, it’s really about like, it’s about love. And it’s about all the left. So I posted pictures of everybody I love because, for me, you know what, one of the things I think that’s been so valuable about my grief experience, in terms of my relationships is Phil and I were pretty insular, we were very, we were busy with each other pretty much all the time. And I still continued to name team, my family connections and my friends, but we were pretty much each other’s one person. And after he died, of course, that was really, really painful and difficult. And I developed a lot of relationships in the aftermath of that, that become very important to me. And so in this new version of my life, my husband is a key person in my life and one of my best friends, but he is also a part of a collection of people who matter to me. And I’m really hyper aware of that, of maintaining all of the connections that fully up and recognizing everybody has a part to play. And so Valentine’s Day yesterday, I posted my nieces and nephews, my siblings, my mom, my dad, my friends, my work team, like I was posting all the pictures of all the people just to remind everyone that love is something that never dies. And because of that, the more love we have, the more opportunity we have to continue this loving connection with the world. Because we are loving more and more people. I love that
Victoria Volk 37:25
I actually posted about self love if you felt like Valentine’s Day was not bringing all the warm
Michele Neff Hernandez 37:31
fuzzies you if it’s chocolate and the bunnies.
Victoria Volk 37:34
Yeah, take all that love that has nowhere to go and and give it to yourself and for widows especially right.
Michele Neff Hernandez 37:41
And I think for Grievers in general, because like I’ve said, so often, we’re so hard on ourselves. And people have often asked me, What’s your best advice to give someone who’s newly bereaved. And I would say, Talk to yourself in the same way you’d talk to your best friend. Because we, we so often will hold ourselves to ridiculous standards and forget how difficult what we’re doing is and we wouldn’t ever say that to our best friend. If our best friend was living our exact circumstance, how would we care for that person, or for yourself that way. And so I love that idea of making sure that we’re and self was on my list of self love people for that reason, because if we can’t, and that all circles back to what I said in the beginning about this list of things that I was doing, and I still saw myself as less than because I hadn’t been able to look at myself and say, you’re valuable, just as you are. And this experience has not changed how valuable you are. It has changed your life circumstances, and you need to adapt something new. That doesn’t make you less than you used to be. And I can’t I mean, I honestly can’t count the number of times I’ve said that to people who are grieving because we want to somehow honor our person or honor the experience or stay connected by making sure that nothing has changed. And it’s just, it’s just a an impossible standard.
Victoria Volk 39:06
I often say that grief puts a veil over our faces, and we just we can’t see ourselves clearly. And you don’t see others clearly and creates this disconnect really within ourselves. And when we’re disconnected from ourselves, we truly can’t connect with others. And so I think part of seeking out community or why it might be difficult for so many to seek out community is because they feel so disconnected to themselves. And so I would suggest to that people start there, start with yourself really asking yourself, what is it that I need today? Or what is it that I’m trying to forget? Or what is it that I want for my life moving forward? What do I see for myself in the future?
Michele Neff Hernandez 39:49
I think that the other part of that that’s so difficult or creepers is that as you said because we can’t see ourselves and oftentimes that clouds the way we see our relationships with others. If it feels like there’s just nothing in the future, and we don’t know the answers to any of them splashes. And I think that’s the one of the key reasons for seeking community, even when we can’t see ourselves, even when we can’t see clearly other people because that helps with one of the things we lose when I personally love guys is that witness the witness to who we are the cheerleader, and recognizing that some relationships are not good. And maybe they wouldn’t have been those things. But there certainly is this witness that happens, we’re sharing life with people. And there are expectations around how we will interact with each other. And when that person dies, that whole dynamic shifts, and there’s no replacement. And so you find yourself swimming in the unknown, trying to figure out how to find your footing when, even when and maybe even especially when the relationship you’re in wasn’t good. There’s this flooding loss where you’re like, but now what? And so being able to be in community sort of helps you to if you look at someone else, that’s what happened for me, right? Like when someone else would come to me and say, I’m not as good as I used to be. And I’m telling them that yes, of course you absolutely are, then I’m hearing myself, say it someone else and thinking that can apply to you too. And so it’s helpful to see other people, sometimes we’re able to see what we’re feeling reflected in, and being able to see that helps us to kind of see through that veil. And I always tell people, it doesn’t matter if you don’t have answers, if you’re willing to keep asking questions, and even make those questions teeny tiny as possible. So what do I want more of in my life today? Well, I want more sleep. Okay, then that’s one thing you want more, that’s one need that you can see. Okay, so now your energy can be focused on that. And and then as you as you continue asking yourself that question, new thing will come up, I want more sunshine, I want more time to write, I want more love, I want more joy, I want more. But you know, we have to be willing to accept I want less pain, I want sleep. I want a break from this going swirling around in my head. Like sometimes the things that we want are, are not going to be the fluffy fun things, or even really forward looking exactly like we are taught to think of forward looking, what do you want your 510 15 year plan? If you can give yourself the smallest opportunity to answer the question would want a lot more of in this moment. What do I want more of in the next hour? Where do I want more of for this day? Sometimes that can be a good place to start and practice being able to answer questions that sometimes just feel unanswerable.
Victoria Volk 42:49
And overwhelming.
Michele Neff Hernandez 42:52
And annoying and and sometimes hurtful. Right? When my fence fell down in my back five months after Phil died, the fence blew down. And I’m looking outside my window into my neighbor’s window. And I’m like, Oh, my gosh. And so I’m thinking to myself, I need to get three estimates. So I started doing that one guy says to me, Do you want a five year 10 year or 15 year events? And all I wanted to do was take a little fence post and smack him with an arm with it because I did not want to eat I couldn’t. I couldn’t I don’t want to know why I’ve 1015 I mean, I can’t think about next week. Why asking me that question poor man. But you know, it’s that sense, right? Of? And then what do I feel like at the point of failure? I feel like I can’t even answer a simple question. Do you want to add 10 or 15? Your friends? That’s because be capable of thinking that far ahead. And so being able to just give ourselves grace around what? So what I wanted the answer to the question is I want the fence to go up today, which one of us could go up to date so that my dog doesn’t get in my neighbor’s yard and allowing ourselves that small thinking? Because we’re trained to think bigger. And when we are trained to think bigger, and we are unable to the story we often tell ourselves is that we can’t and that that’s terrible, but it’s natural. Of course. It’s so painful to be at this moment sometimes that I cannot even imagine the next five. And so what do I want more of? I want more relief. That’s okay. That’s a that’s a perfectly great answer.
Victoria Volk 44:23
What had Phil’s life taught you?
Michele Neff Hernandez 44:26
She was a person who did not live with regrets. And sometimes I found that very annoying. But I have learned what a gift is not to second guess all of the things that he he would make a choice and he would run with it. And if it didn’t work out the way he wanted it to. He didn’t regret making the choice. He just pivoted and it’s really been good for me, I think because I’m a perfectionist by nature. And so I don’t it’s been hard for me to make mistakes and allow myself the pen It’s a bit of a mistake. I always thought when I don’t know about that, I don’t know about the benefit of mistakes. But I’ve learned that there’s just so much that’s a gift in mistakes. If we allow it and he was just fine with it, he would go right on to the next without regret without beating himself up about it, for the most part, and I’ve really appreciated being able to, to allow mistakes and to and try to avoid that longing for perfection that is part of my nature.
Victoria Volk 45:30
And actually, it’s very fitting because this week in my newsletter, it’s I’m digging into the word regrets. Oh, great. And then I flipped it on its head because so often when we hear the word regret, we think of it in a negative connotation. We think the things that we didn’t do specifically Well, I do anyway. But that’s that’s usually the thing that comes to mind is what I don’t do. What if we thought about regret in terms of what do I regret starting? I’m sure you don’t regret study only starting to write a great starting your group of widowed women Bay. So if we flip regret on its head and think about it, what do I regret starting? Or what will I regret if I don’t start it?
Michele Neff Hernandez 46:12
Yeah, there you go.
Victoria Volk 46:13
You know that too?
Michele Neff Hernandez 46:16
For sure. Yeah. And you know what, you’re right. It is interesting how regret? Definitely. I mean, for me, anyway, such a negative connotation right away. And I think the other thing is, What won’t you regret? What things won’t you regret? And when we look back, especially for relationships, right, I don’t regret that even knowing that we would only have five years together. I don’t regret the choice to spend my life with. And so that’s another road for regret is the things that we value and would do again, even when their heart
Victoria Volk 46:49
What was your dad’s name? What is your dad’s name?
Michele Neff Hernandez 46:52
Not why dad’s name is Dan net. I am endlessly fortunate to be his daughter. He was the proudest Papa, you can imagine. And so in fact, he would often come to our events are called Camp widow, and therefore any person who’s widowed, so any gender any relationship type, married, not married, if out speaking, he would sit at the front, and he would tell the people on either side of him that curl up there, that’s my daughter. So he was not a good person himself. But he would be one of people in the bed friends also been a really Hello, in some ways, amazing, other ways challenging, emotionally challenging to watch my organization serve my mom. And for her to step into this space that I created as a widowed person, I guess intellectually, I always knew that that was the likelihood my dad has struggled with his health for more than a decade. It was always in my mind, of course, that that if you were to ask me who was going to die for us, the likelihood was always going to be him. And so it’s been incredible to witness my mom’s stepping into this space. And again, my parents are the people who told me about community. So she’s a natural community builder, and she is at home and community and she fits right in and is creating her own communities within the community. So it’s been a really heartwarming and also heartbreaking experience to witness her stepping into the widowed world. And partially a one that, you know, that I built for this purpose. And partially just understanding on a personal level, what it’s like to be changed by widowhood. And knowing that, on the one hand, there’s nothing I can do to, to change anything about pain that she’s living in. And I and I realized the value of it, I know that she will be changed in ways that are, are necessary for her, because my dad is dead. But it’s been really, I keep saying, I feel like I have a little bit of widowed PTSD, because every step that she’s taking into these things that I had to do myself is like stepping back into my young, widowed self and looking at this experience from her perspective, while also of course, seeing it from my own as a daughter. So it’s been a it’s been an intense couple of years, for sure. I imagine it’s brought you and your mother closer. Yeah, for sure, including the care experience, because we were all together. I mean, it was also interesting, because of COVID. We were only the siblings. So we all have partners who would have loved to be able to help but because of COVID We were trying, it was pretty early in COVID. So we were being testing and doing all of these things to make sure that we could be there. So we had to limit the number of people and so ended up being literally like our seven siblings. And then towards the end, a couple of grandkids would come and my daughter was able to be there for a good portion of the end of its life. So that was beautiful too. But when what worlds would you be back together in your adult as adults, sort of reliving your your childhood it was it was an interesting gift.
Victoria Volk 50:00
And I never really thought about that either. And that’s really kind of often what happens right at the end of life when you’re given if you can look at it like an opportunity and but again, not all relationships will allow that. And that’s the unfortunate thing. But it is possible to have a good death. It is possible that I will my end of life doula training really opened my eyes to that with a bat.
Michele Neff Hernandez 50:23
So my mom is a birthing doula. So yeah, and so it’s also just all those lessons of birth and time because birthing doula is also deal with that, when births are don’t go the way people hoped they would. And so, so much of what she leaned on while taking we would, we would call it mom’s do Lane dad, because we could do so much. But there were times when it was only her that he wanted. And so we’d be like, mom, dad need to do it. And it would, it wouldn’t need to be her in that moment. But there was a beautiful, like she said, I think the thing is that for our culture, that we are because of our fear of death, and because of our desire rate for perfection, and for us not to be changed, like all of these roadblocks that we put up for ourselves, we make it difficult for us to embrace the reality that can happen. Because death itself, you know, in our culture is often the enemy. And so we don’t want death. And because we don’t want death, then nothing about it can be good. But the reality is he couldn’t have. I mean, it was hard, really hard, but beautiful. And, and we gave we weren’t able and fortunate as we were to be able to give him what he wanted. And to juxtapose that with what I knew about other people who had had a loved one die from COVID. It just really just like I said, drove home how fortunate we were and how grateful I was for his death experience. And one of my brothers, they said something about looking back, because we’re now approaching a year anniversary. So all of us are kind of remembering where were we this time last year, and I said something to my brother about it’d been a hard day or something. And he said, I look back on that time. And I think it’s one of the best times in my life, that we could be together that we could be in service to dad, that mom had the support that she needed to be a caregiver, but not have to do it all on her own. He was like I I just look back at that time. And Bill. Yep, so grateful. And we’ve said many times, that’s not I don’t put that out to pretend that that’s what everyone is fortunate enough to build. But I do think that we more often than we than we can see have the chance to make death, a beautiful experience, when we allow ourselves to see it not as the enemy will true.
Victoria Volk 52:56
Again, it comes back to the different layers, so many layers of grief, when you can have seven siblings growing up in the same household and every single sibling is going to have a different recollection and perception and experience of growing up in that home. And that’s that adds a real different dynamic at end of life for sure.
Michele Neff Hernandez 53:18
I think it’s also worth saying out loud that it’s not because it was beautiful, doesn’t make the grief easy. Exactly. So I mean, that’s the other piece right is we can welcome a beautiful bath. And we can live and I can feel endlessly grateful for this particular part. And that does not make what comes after it easier. And I think that was another piece of my personal understanding of what we were doing was that I knew that we could make choices that would make his death easier, and that we could come together in this way. And also that it wasn’t going to change anything about how party was great. And that we were all gonna have to do that work. And we are definitely eight different people doing it in eight different ways. And each of us living that each of us watching my mom witnessing and as you said, I am witnessing it from my load perspective. My siblings are witnessing it from their perspective of their mother. And while I also have that, of course, that I have this other layer and so a lot of times I’ll say we can’t we can’t do that for can’t take this from her. It’s impossible. I know. It’s hard to watch her BMP. I know it’s hard to watch. Knowing Valentine’s Day is a perfect example knowing that last year Valentine’s Day, we created this whole league Valentine’s Day scene and left them and everybody went home for the night came back and so of course she’s Of course she’s missing him and there’s nothing you can do about it except for tell her we love her and be available if she wants to talk. And so it’s been an interesting role for me to play because I uniquely know that I know that there’s nothing they could have done on the first Valentine’s Day to make it easier. I’m except keep loving me If I had to make my way through, so no we not for people, we don’t imply that a good death makes the grief easier, a good death just that that passage between life and death can be smoothed by a willingness to allow the love and the conversations and and also to let people just be who they are. No one’s going to change in their last five minutes before they die. And so being able to recognize that relationships may be what they are, it doesn’t necessarily negate the opportunity for a good death.
Victoria Volk 55:36
Yeah, I agree about 100%. There’s no half grievers.
Michele Neff Hernandez 55:40
that’s true situation is true. Try as you might agree with 50%, it will not work.
Victoria Volk 55:45
So what is I mean, you’ve given so many tips and things throughout our conversation, but what gives you the most joy and hope for your future?
Michele Neff Hernandez 56:01
Well, I would answer that in two ways. One of the things that brings me so much joy is the privilege of witnessing the evolution of my widowed population, like when I meet a widowed person who has just been widowed, and then get the opportunity to be a part of their lives for five or six or eight years, and be able to witness where they are eight years later. It’s an incredible gift. There’s nothing like it. And the fact that they can look back on their experience and say, that being a part of this widowed community continues to be a blessing to them is, is the whole purpose of my work. And so I feel very fulfilled in that way. And then on a personal level, one of the things that Phil’s death taught me just in such an a deep way was that the time we spend matters, and being able to make space for things that might not seem that important to the moments if one of them for example, if one of my kids calls, I turned my phone off today, because if one of my kids calls I’m always going to answer like, I’m always tend to dance, like look at the phone. But you know, of course, that seems like something that people would always do. But you know, my nieces and nephews, I don’t really special relationship with them. And I look to Phil’s death, as the beginning of that, because it was like, okay, you know what, my 11 year old niece does not care if I have a big organization for whatever people, if that means that I can’t come to the recital, or the I can’t make time to talk about her latest book, or that I can’t spend time I have 10 nieces and nephews who are between the ages right now. But will this one just turn 1414 and eight years old. And they’re my little buddies. And, and I honestly believe that that’s because Phil’s death taught me like, you only get to do this one time for real. And if you want to leave a legacy, that legacy can be build one phone call to someone you love at a time. It doesn’t have to be bigger than that. And so I’m always filled up by taking those times, even last night, Valentine’s Day dinner, you don’t take that for granted anymore. And those those moments are ones that build a legacy of making time for the people I love. And I’m super grateful for that lesson, because it’s changed the way I’d spend my time.
Victoria Volk 58:35
Has it changed your camps that you nurture and bring together for widows? How have they changed over the years?
Michele Neff Hernandez 58:44
Where they are always in? Yeah, I think the thing, the most thing, particular about my own grief, I’m in a different different space now. Right from I started this journey, having nothing to do with nonprofit knowing nothing about what I was doing. And now we’re going to nonprofit professional for 14 years. And that experience alone rate has shifted some of how we do what we do. But I think the key thing about my own experience is that we make sure that people don’t feel like they have to outgrow our programs. And by that I mean if we go back to that example of someone who’s newly widowed, let’s say five years into their experience, they have a new person in their life. And if they’ve disconnected from their widowed community, that learning how to love somebody, again, and finding a balance between the lobby pad for your person who died and the love you have for the person who’s alive and how you especially because if you marry them, then husband or wife is the same word, right? Like I have another husband and so how do you how do you balance that? If you’ve lost connection with your community, who else is going to answer those questions for you? The people that you need are the people living that experience and that isn’t ongoing. We talked about my daughter’s wedding like now Knowing that there are other widowed people who’ve made their way through weddings, what did they do to honor that person? I mean, I had this deep reservoir of experiences and people and connections that will serve me for the rest of my life. And I know that that’s true for them, too. And so what I have learned is that I’m going to need my widow community forever, because they are a part of my witness, they are part of my evolution, they are part of each other’s evolution. And so we build programs that people don’t have to outgrow. And that doesn’t mean that you stay stuck in your brain. That doesn’t mean that you’re not moving through the natural ebb and flow of life. In fact, it supports the natural ebb and flow of life by having an ongoing community who has witnessed the depth of your grief has walked with you through the healing process, and has come to be the people you rely on when secondary losses come up. When a new experience comes into your life that requires you to kind of dig into that grief again and figure out how does the grief play into what I’m living right now. So the biggest message for me has been building a community. That’s a lifelong community of friends. And I’m super, super grateful for that.
Victoria Volk 1:01:15
So what happens if someone comes to experience camp widowhood? Like what what happens,
Michele Neff Hernandez 1:01:22
but I always tell people about the blend of the conference and retreat and or high school reunion. Because our programs 40 40% of every program is returned campers. And so those return campers are coming. Why? Because they’re coming to this event to experience new information for where they are in their grief process right now, one, and oftentimes to come back to visit their friends and reconnect with the people who, like I said, have witnessed the depth of their grief, they just become such good touch points for each other. So when you would come to camp widow, there are a selection of workshops that are all designed to address where you are in your way of life. So we call newly widowed to be a year or less recently widowed to be one year to three years middle widowed, which is kind of like the growing years of three to five years where this life is you’re starting to put it together. You’re you’ve lived it for a little while, but then often the question comes, but what do I want? What do I want more of, and that can be more of a long term conversation or a long term thought process, and then seasoned whatever we call five years and more. Those are people who have been living or widowed life who have oftentimes, re partnered have changed childhoods have done a lot of different things to to adapt to the death of the person that they grieve. And so all we we plan workshops to address every one of those areas. And so when you come to camp, you have the opportunity to interact and workshop you have entered the opportunity to interact in this group of people. So we divide people into workshops, where all of our newly wounded people are together, all of each of those other groups are together so that they can address the things that are unique to that experience. And then their social activities, people. Prior to COVID, we had a huge dance floor. So we’re sort of adapting to what this next this next version of Camp looks like. But people would often say to me, one year we had a ballroom and they said, Well, I mean, we could add larger dancer, but I can’t imagine that that would be what you would need. I was like, Oh yeah, double the dance floor. Because you can be with people who understand that dancing, and smiling and laughing doesn’t mean you’re over it. It just means that for this moment, you’re allowing the lightness of being with people who have made you feel free for a minute to be the primary experience you’re having at the time. And so our dance floor typically is a rocking dance floor of people who are so grateful for the relief of movement and music and camaraderie that speaks to a life affirming board. So that’s that’s the template experience in a nutshell. And it lasts from Friday to Sunday. So we start first thing in the morning on Friday, and we go all the way through midday on Sunday. And then those connections that people make, they tend to make lifelong friends. We have many people who have with one particular group of whatever people who met at their first Kimbo they all were together, I think it’s probably been seven years, they’ve had that same tech stream for seven years. So they continue to be the people who something great happens. I tell my seven my text stream something horrible is happening. I tell my extreme I need a little bit of support. I’m missing my person for some unique reason or I’m missing my person just because I miss my person that all of that can go into that space and imagine the power of that. If you have that for a year upon year upon year and each one of them has gone through their own evolution of the variety of things and they celebrate it together. Where is this located? We have four different location one is in Tampa. That one’s coming up in March, March is Tampa, Florida. July is Cindy in California, August will be Brisbane, Australia and November will be Ontario, Canada. And then we’ll have one, and we call them pop up camps. So pop up camp is just a one day camp where we kind of coalesce as much of the three days into one as we can. And this allows us to kind of move around the country a little bit, we’ll had one of those in Denver, Colorado.
Victoria Volk 1:05:25
It’s amazing. Do you see it’s new this this coming year for it?
Michele Neff Hernandez 1:05:32
The popups are relatively new, we started them before pandemic, having the opportunity to move around a little bit is going to be in for us. At our Australia camp is also a new camp. We’ve only done it once before we partner with another organization in Australia. And it’s been an incredible thing to watch what I imagined in and did the first time with my whole family as volunteers because they didn’t have any volunteers, they’ll also be working in a different country is really incredible. We’ve got a great partnership in Toronto, we just incorporated actually. So sorting spirits, Canada, is the organization that runs the Toronto event, it’s just been kind of amazing to watch it grow. And we’re very focused on making sure that we continue to provide quality programming we’ve had, as you can imagine an increase in demand, in part because of pandemic in part because of the CNN Heroes exposure. And so there’s been kind of a lot of people coming in. So we’re we’re really focused on making sure we take care of you.
Victoria Volk 1:06:30
And your book, are you on a book tour this year?
Michele Neff Hernandez 1:06:32
And my book, I am on a book tour this year, I actually have it doesn’t the first time I button, hold it up so that people can can see and see it in my hand. So yeah, I’m really excited about the book, the book tour will be from March to November, I’ll be touring all over the US, Australia and Canada as well. And, of course, including books at Campo. And it’s it’s such a full circle place I started initially, I thought I would write a book. And what I used to tell people was the book that I thought I would write in my first year of would have became a community. And it was really clear that I was really supposed to just focus on the community. And I, I really thought that meant just the book would come or it wouldn’t, and I didn’t worry about it too much. But then over the years, learning more and more about how I could bring to grieving people and anyone who has experienced a traumatic events, to help with some just practical steps towards rediscovering yourself and allowing yourself to be broken so that their space for healing. And so that’s really what the book is focused on. Of course, it’s not a book I could possibly have written a year into my widowhood. So I feel like the timing is is as it was always supposed to be. And I’m eager to get the message of the book into people who are struggling to accept this new version of themselves, because I see such potential there. And I really wish for people to be able to give themselves the kind of grace they would give to someone they love. So that’s, that’s the hope of the book to get that message out stance.
Victoria Volk 1:08:10
That’s my hope with this podcast to the people
Michele Neff Hernandez 1:08:13
That weren’t a perfect pairing,
Victoria Volk 1:08:16
Can see that there is another side? Yeah, allow yourself to get there.
Michele Neff Hernandez 1:08:21
Yeah, and be kind in the process.
Victoria Volk 1:08:24
And I feel like those really sad associations for yourself?
Michele Neff Hernandez 1:08:27
Yeah, and the thing is that we are, it’s so easy to fall into the trap of negative self talk. And you’ll hear a lot about that. And when people are struggling with self esteem, what we sometimes don’t translate is that reef consistently has an impact on self esteem. And so with that negative self talk takes a totally different tone. When you’re just saying too tired, I’m lazy, I can’t get off the couch, and it doesn’t acknowledge how much of your body, heart, mind, spirit are all involved in trying to figure out how to reconstruct your life without this criminal, this person living, to be able to address that negative self talk and to be able to say, be kind to yourself, like that’s the biggest that’s the biggest message for every griever be kind to yourself be kind as kind to yourself as possible.
Victoria Volk 1:09:24
I just had a thought too. And in especially in I think well again, depending on your background and in how you were raised and things like that. But when we put so much of our if we look so much at someone else right? To fill, what it is within us that we never filled ourselves and then that person is gone. That’s it deconstructs everything we thought everything and about ourselves and about my worthiness and everything. And so I think that’s would you agree that that’s why partly it’s so difficult because you really, it’s almost a reconstruction of yourself, knowing who you were before you put so much of of yourself into this other person? Well,
Michele Neff Hernandez 1:10:11
I think I absolutely agree, first of all, but I think it’s even, it’s even more complicated in that one of the things that I wrote about was, how surprised I was that my sense of self was shattered by my husband’s death, because remembering I had been divorced. And so in my first marriage, I was very young. And we were growing up together and having three babies. And so we were at when we divorced, I was like, I need to be independent, and on my own. And one of the things that was struggled for Phil and I was my, like, Uber independence, like I was super independent, I was not no interdependence, none. And so we struggled to find a balance there. And so the last thing I thought, what happened when he died, like I was so independent, how in the world did my entire self image shatter when he died? And I think it’s because we see ourselves in the world that I think this is true for every creeper in and as you said, particularly true when the person who died is your partner, is that we live in a world where they’re alive. And we are a person in that world when they’re alive. And when they die, we have to ask ourselves, who am I in his world now that they’re dead? And that is a question every guru has to answer. Right? And so I think often about the experience of the death of a child, who am I as a mother, when my child died? Right, so that we have we have to answer, we have to be willing to ask those questions in order and not assume that because we need to ask the question, there’s something wrong with us, right? Because that’s a natural part of living in relationship is we impact each other. And whether or not we want to recognize our interdependence, there is an interdependence, that is a natural part of having someone be a part of your life. And the more the larger the part of the life that they have, the more difficult it is to redefine yourself after they die. And so again, those those that redefinition, it may seem similar. It’s just that you have to be willing to ask question, I was shocked that I could not believe that my sense itself was impacted. I would have never believed you. If you had told me that before he died, I would be like, well, I know that I’ll grieve. I would tell I’d be terribly sad. But I know who I am. After he died, I was like, Oh, am I like this? It’s a disaster. I felt like it was a disaster. But what I didn’t know is that it’s totally normal. Of course, of course you do. And so normalizing that experience, I think it’s so important, because then we get to just ask the question. So is it the right time for me to run a marathon? Or isn’t it? That’s not a judgment call? That’s not a my a good person. That’s just, I am now living in a different situation. Does this new version of me need this? And the answer might have been Yes. Maybe I didn’t need it. In this case, it was no. And there’s so many other things that we do that we asked our jobs. So many people when they’ve had a deep grief experience, look around them and think I don’t care about this anymore. Hobbies, where we go to eat, what our room looks like, if we had the same house, all of these can be up for question, which for some people that will be uncomfortable. For other people, it will be freeing partly depends on our life experience. But whether or not it’s freeing or terrifying, still, asking questions allows us to consider if something different might serve this person we are today better. It’s all normal and natural. Totally normal. And and it’s just so sad that it’s unexpected. Because it feels it felt to me like a punishment. I felt like I was being punished. If I did all that work to learn who I was, Are you telling me I have to do that.
I was just so surprised by it. And also just depressed by it. I didn’t want to do it again. And so, but what I discovered through the process of it was that it allowed me to create a life that better fit who I am. Until you can recognize that there are differences. You don’t know how to build something for the person you are in order to build something valuable for who you are now have to be able to look at the things that have changed, grieve what you’ve lost, acknowledge that you’re different grieve what you’ve lost. And then you can start kind of asking questions. What do I like? What do I not like and and then begin building from there. So it’s insightful. Your comment is so insightful in that it is the Forget when it’s a partner. But I think it’s also so much a part of any grief experience. And it’s unexpected in many ways, because we think we know who we are. And we do well, to the extent that we do, right. But you could say we do in the situation that we are in, but when the situation changes, it’s worth asking, what about me has changed as the situation has shifted?
Victoria Volk 1:15:27
So good, so good. Is there anything else that you would like to share?
Michele Neff Hernandez 1:15:31
I do really want to just point out that the book, while it is the foundation of it, of course, this grief is really intended for anyone who’s lived through something traumatic, because the the traumatic experiences we live, you mentioned a toxic relationship that had had been traumatic those changes, too. And if we can allow ourselves to kind of consider how we’ve been changed and integrate what we know about ourselves now, it’s so valuable for us as we shape our future, and utilize those tools in our present to create something that matters. And so the book, it does have a foundation of grief. But it was intended always for anybody who’s lived through a traumatic experience and then feel like we all had through pandemic then impacted in in unique ways for everything from a person died during a pandemic. And of course, the biggest possible shift all the way down to I decided I really actually love working from home, I never want to go back. So we’ve been shifting all of us and they’re in the array of, of conversation in between. They think it’s, it’s something if we can acknowledge that we’ve been changed, and we don’t make getting back to normal the goal, then we’re better able to craft us what’s happened to craft something valuable. So my hope is that people will be able to see not only, even if what they come to the book for is a grief experience, they see not only that great experience, but the other experiences in their lives and be able to begin to integrate some of what they’ve learned through that to be able to craft a really mean like today.
Victoria Volk 1:17:08
Is an invitation to pivot
Michele Neff Hernandez 1:17:10
Definitely is an invitation to connect that’s perfectly said.
Victoria Volk 1:17:14
Where can people reach you if you’d like to connect, learn more.
Michele Neff Hernandez 1:17:18
Love for them to join me on my website. It’s Michelle, I spell that with one L thanks to my mother. So Michelle Neff, Hernandez with a z.com. And you can find information for sworn spirits there. It’s for saying soaring spirits dot o RG. So it’s soaring and spirits as a plural dot o RG, you’ll find all the soaring spirits programming there. And then like I said, You can reach me on my website, the book is there. So you’ll have links to purchase a book if you’d like to do that, and can also contact me there.
Victoria Volk 1:17:47
And I will put all the links in the show notes. Awesome. Appreciate it. And thank you so much for your time. I know you’re in the midst of an exciting time and you’re feeling great. Yeah, it was this has been a treat. So thank you so much.
Michele Neff Hernandez 1:18:03
I appreciate being invited. And I love what you’re doing. And so these ongoing conversations, I feel like this is the way that people have the opportunity to understand that they can be changed is by hearing exactly this. And I should also say listening to a podcast Community Councils community to that doesn’t have to necessarily be a one on one interaction. So in whatever ways you can expand your circle. Those are the ways that you get to access those kinds of cones that we talked about on the road.
Victoria Volk 1:18:32
So thank you. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.
Child Loss, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Parenting, Podcast |
Kasey Carmona | 6 Days of Dying and a Masterpiece of Life
SHOW NOTES SUMMARY:
Warning: This episode contains a mother’s account of her son, CJ’s, final days of life. This may be difficult for some listeners to hear, particularly those who have lost a child.
99 Days. How much life can you squeeze out of 99 precious newborn days? Especially when 84 of those are spent in the hospital?
Kabuki, a major theatrical form in Japan for four centuries, became less of a theatrical experience and more of a grieving one.
Kabuki Syndrome (a rare genetic syndrome), named in part after facial art depicted in Kabuki theatre, expresses itself with distinct facial features including large eyes and long lashes.
CJ would not only fight to stay alive with Kabuki, but due to Kabuki, he was also born with half a heart (hypoplastic left heart syndrome), 3 kidneys, and a cleft palate. The odds were stacked against CJ and his family.
Kasey and her husband did whatever they could for their son. However, when it became clear that they were going to have to have procedures done to CJ, that was their sign that they weren’t honoring CJ’s spirit or his life. They came to accept the truth of their son’s young life and decided to take him home with oxygen support only.
Kasey could have never anticipated that the day they took CJ home on hospice care would be the first day he would truly be living. For six days, they loved as they had never loved. And, they found peace in their sorrow; believing that the gift of CJ’s life was to highlight the abundance in the present moment.
We often torture ourselves with questions we will never know the answer to. And, with odds of .032% of this diagnosis, “Why?” is a question with no answer. Scientifically, it comes down to one tiny missing gene. In the contrast, we can recognize the fragility of life and its magnificence, too.
“Part of living the abundance of life is experiencing loss.”
– Kasey Carmona in a Valentine’s letter to CJ
RESOURCES:
NOT MENTIONED BUT HELPFUL:
CONNECT WITH KASEY:
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NEED HELP?
If you or anyone you know is struggling with grief, substance use disorders, or a mental health challenge, free resources are available HERE and HERE.
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CONNECT WITH VICTORIA:
Victoria Volk 0:00
Hi this is Victoria of theunleashedheart.com and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard or anyone who wants to learn how to better support loved ones experiencing loss. As a 30 plus year griever and advanced Grief Recovery Methods Specialist, I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate grievers and non grievers alike spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with yours. In thid platform, grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather. Let’s get started. Thank you for tuning in to grieving voices. Today, my guest is Kasey Carmona. She is a former performing arts teacher turned full time mom to two boys. When her second son was born with a life threatening critical illness. Kasey was forced to surrender herself and her son into the great big hands of love. Kasey, and her adorable family live in Atlanta, Georgia. Thank you so much for being here.
Kasey Carmona 1:24
Hi, thank you, Victoria, I appreciate it.
Victoria Volk 1:28
And I just off the bat before we started recording, this is a relatively new loss for you. And so so thank you for having the courage because it does take courage to share your story on a platform like this, whether it be mine or anyone else’s. So I honor that courage in you. And I thank you for sharing your story with me and the listeners.
Kasey Carmona 1:51
Oh, thank you. There’s something about this podcast to have grieving voices. The grief journey is long, but necessary, is what I what I share often. And I know I’m new on it. And I’m sure that I know I have a long way to go. But where I am now that I do, I do want to share where I am in this moment, and it will change and then months and years to come. But where I am, feels important too.
Victoria Volk 2:23
So what brings you to grieving voices?
Kasey Carmona 2:25
It’s, It’s love. It’s love my son, CJ. As you shared, he actually his first birthday would be next month. And he was born with a congenital heart disease called hypoplastic left heart syndrome. Essentially, it means that he was growing in me with only half a heart. We thought that that was the worst of it. But the night that he was born, we learned that it was much more. And pretty much every major body system was affected by something months later, we would learn that it was because of a single gene deletion. It was a rare genetic syndrome called Kabuki syndrome that caused a multiple abnormalities in his body. And and I just say like the poor baby had a lot going on. That’s what I always say. And he had a lot going on. And we loved him through it. And we loved we loved every bit of him. And that that’s what brings me here is is I think grief is figuring out what to do with all the love and CJ story is worth being shared. I just told somebody it’s it’s both both CJs life and death were beautiful. But there was so much life in His death. That really is the part that I want to talk about. We did something pretty wild I would say I quickly learned that the best way to love my son in the hospital was to advocate and I I advocated on every little thing if he was crying too much we didn’t need to do a temperature check. Just look at look at him. Oh but but the reason why is because they told me if he cried for longer than five minutes it was bad because because he only had half a heart right and so so we couldn’t have him even cry. He’s a baby though babies cry like but the the the amount of suffering that we saw In the hospital, CJ, at three days of life had a 10 hour open heart reconstructive surgery three day old. He was on ECMO, the heart were the machine that pumps your heart for you for longer than most babies. But he just never quite recovered from that surgery. And it’s because of so many things. He had three kidneys, he had a cleft palate, so he wasn’t able to take feeds. But even still, because of Kabuki, he created so much mucus that he wasn’t able to even swallow anything into his stomach, everything went into his intestines. What we had to put a tube into his intestines. Later, it wasn’t until we made a pretty critical choice that I’ll tell you about. We learned that his his brain nor his body grew, I knew he was having trouble gaining weight, but I didn’t realize his brain never grew. And just think about what that the implications of that especially we know that children’s brains have to grow and unfussy. Essentially, as I started advocating of my child needs this, my son needs this, we’re going to do every test every scan with him in my arms, because he cries, if you if you are trying to poke and prod and get what you need, and you’re gonna get a better reading with me holding him, you’ve never done it before. Well, first time for everything, you know, like, we just I did everything that I could. And in early May, we got the diagnosis of Kabuki syndrome, and that that syndrome on top of his severity of hypoplastic, left heart syndrome. It just, it just didn’t. It didn’t sit well with my husband and myself. At that point, we had seen so much in the hospital, and so much suffering, that it was hard for us to, to imagine this to keep going. And at some point, and this is a wild thing for a parent to say and I hope no parent makes this choice. But I believe that there are parents out there that question it at some point, death is better than suffering.
Kasey Carmona 2:27
And that’s a good that’s a really challenging thing to say out loud as a parent to decide that the hope heaven offers will be so much better for my son than what we’re doing to him here. And essentially, we had already been working with the palliative care team at the hospital and the Children’s Hospital. We were at Children’s Healthcare of Atlanta, Eggleston and the team is fantastic. They they are wonderful people. There was a doctor that CJ had a really bad episode I learned later it was his first death contraction. And the cardiologist that was on staff just didn’t know what to do. cardiologists switched out every week, the new cardiologist came in and she said, Listen, I don’t know what to tell you. I don’t know what to do, I guess. But we need to do something. So I guess we’ll intubate him and put him under for a Cath. And we’ll do that procedure. And the language that the PACT team gave us was, we will do things for our son CJ, but we will not do things to our son. And when that doctor said, I don’t know what else to do. So let’s do this. That that was the red flag of we’re doing something to him, not necessarily for him. And and so we worked with the Pac’s team, and we brought in hospice care. And we said we’re done. i We advocated so strongly, we said we’re bringing this baby home on pediatric hospice care. And let me just tell you, for our family, obviously, the hardest, most tragic decision a family could ever make. But it was so beautiful, because our son came home. And I also have Teddy, who at the time was only 1415 months old. And so CJ got to be with Teddy. And they they were pretty much together while CJ was in utero. I mean, it was so sweet the boys. Teddy would climb on my tummy and CJ would kick and like the the boys had this connection, but then to come home and to watch it play out was was just so beautiful. And for us Even though my son was at home to die, court and I believe that CJ is life started when he came home, he spent 84 days in the hospital. But those were the days of suffering. There was a freedom that happened when he came home. And it was so beautiful. I mean, the things that as mothers, we might take for granted with healthy children, just, just even, just even being able to take a walk outside. He at this point, he was still hooked up to his life supports. But I wasn’t able to do that in the hospital, he was connected to a wall. Or because of COVID Our family wasn’t able to see him. And so within two days of him bringing, bringing brought home, we had people come from Florida to California, to Atlanta, Georgia, to say hello to our son. And we had this beautiful welcome home party and we had food and we had ice cream cake and and all the cousins were there. And
Kaseu Carmona 11:18
Everybody got to say hello. And one of the most incredible gifts that somebody gave us was a photographer and she just sat in a corner and took these beautiful candids of CJ. And his it was really the family that came to support us. Not not all of our aunts and uncles were able to make it but but those that came to support us while CJ was in the hospital, we invited back and and most of those weren’t able to meet him. So so they were able to meet him for the first time. And it was it was raining that day. But but I just remember it being so bright like i We live in a 1920s school house. And we have these beautiful 10 foot windows and we just sat we put we put the baby recliner and rocker right by the window and I don’t remember raining I just remember it feeling so beautiful and so lovely and so warm in the house that day. And it just felt so good for us all to be together. I think that this is a familiar feeling. For those that are have loved ones at hospice or loved ones that are going to die or have died. There definitely was a sense of denial. Probably the first time that experienced denial. I mean, because my baby was home like for the for the first time he was home, like how great and I just thought things. How could things go wrong? You know, I mean, this is everything that you could have hoped for granted. He was he was a sick, he was a sick baby. He was a sick baby and it just didn’t feel like that cash. My hospice nurse her name is Lenny’s short talent she she’s also a grief educator and she she is one of those angels on earth. I mean just just a walking saint who just who just tears a woman so close and dear to my heart. And she kept saying where are the giraffe where the giraffes that are looking ahead and there was one day where she she had to look ahead and say all right, I think CJ took a took a bit of a turn. At this point we were only a weekend to our time on hospice and CT was at work I told CT to come home and at that point we we made plans we did a family photo shoot and and we got all dressed up and all my boys are in white shirts and I borrowed a dress from a girlfriend that was gorgeous and I had a friend come and she did my hair and makeup for me so I felt really good and that was such a weird day because I was like I can’t I I’m spending time getting ready and feeling pretty well. I only have minutes left with my son I only have moments left I only have hours left I only have days left like this This feels so weird and and the photographer that took the candid photos Her name is Joy she came back she she was so kindly came back to take these photos and both joy and my dear friend Emily were there and they just were like know what this is you’ll want these for the rest of your life take take the 30 minutes you’re okay you’re still a good mom to put some makeup on and you know put a comb through your hair. But I but I do remember that of like, this feels very vain to me and I actually today my son Teddy went to go point at one of the photos that we took from that day and and I did just think to myself today and this is a vain thought but but but goes along with what I’m saying here of like, gosh, I looked so pretty that day and And I’m just so grateful for other people to speak in and say, take a moment for yourself here and it’s okay. Anyways, we took these photos and they are they, they represent they represent so much of the life that CJ had and their smiling faces and my son he looks so beautiful, he’s his cheeks are full and he’s got his little curly hair because we I wet it before we took the photo so those hair had those perfect black ringlets and, and we, we took photos throughout our beautiful property that we live on and and it was a good morning. It took a nap after because it was a it was tiring. And then after CJs nap, something changed. And it’s it’s a little too painful to even go into it all and I won’t because of the trauma that is still there. But I will say that the hospice team came in and essentially said today’s the day Today’s the day it’s time to take your son off life support.
Kasey Carmona 16:13
It’s time to take them off for CJ it was oxygen and he had that NG tube so I was was exclusively pumping which is amazing. So my breast milk was going straight to his intestines. And and this is This to me is where life and death are on this wonderful continuum. And sometimes it’s hard to see it as a black and white thing. Because this this is really where we started to see all that we can do and CJ is life when you know you have at this point minutes hours left. So what you do what you do when you have one potentially one last night with the person that you love and for us we we made a family masterpiece we got out the paint we got out a big a big canvas board we went outside it was May and it was gorgeous. And we we put different colored paints on on a piece of paper or I think it was a paper plate my son Teddy had blue paint I had the green paint court had gray and little CJ had read and we just stamped with our feet on this canvas and together we made we made our family masterpiece it’s the most beautiful thing hanging up in our home because it’s the thing that we can point to and say we were all together this is the time of our life where we all shared we were all present This Is us This Is us This is where love combined it was
Kasey Carmona 18:27
A beautiful moment we have a meal together and and and then that’s when we that’s when we
Kasey Carmona 18:50
We put Teddy to sleep we brought we had Teddy kisses brother Good night and and then we we took CJ off of his life supports
Kasey Carmona 19:04
That night was was the dark night. You You don’t want to go to sleep because you don’t know what’s gonna happen.
Kasey Carmona 19:17
My husband laid on one side of the bed I laid in the other and CJ was it a one of those? swaddle me it’s like a little a little baby nest. He’s sleeping right next to us. And you know, you just put your head right next to his and and you keep your eyes open even though they’re they’re fluttering shut. You just gotta stay awake, but at some point you can’t. And so so we fell asleep. That next morning, Miracle miracles that baby was still alive. He was still alive. We couldn’t believe it. Um, but At this point he he wasn’t looking good, right? Like, I mean, sweet boy. It was It was wild and, and His breathing was so shallow and and it was hard that that morning we courts aren’t Auntie Helen, Teddy and CJ called her OMA OMO was living with us. And we had OMA take Teddy, we just were like Teddy needs to. You guys can’t see this. This is too, too sad to dark. We stayed actually, in this bedroom right here and too much. Hospice finally came, I mean, talk about an intimate moment. For your hospice doctor and Lenny’s the hospice nurse. That’s the angel to sit on your bed with you and your dying son. That is intimate. And, and they said, Yeah, it’s it’s tonight. It’s tonight. And I just at that point was like, I if you don’t realize that death is going to be so difficult. And so I’m like, you just want him to die as fast as possible at that point. And it was just so hard to watch. A breath, no breath. I mean, it was wild. It was wild. And, and Looney said, I know you want to protect Teddy on this. But I just think Teddy needs his brother, CJ. And CJ needs his brother Teddy. And I think Teddy needs to say another goodbye. And I think they need to be together. I was like how do you let a little baby see this? How do you let a baby see this? This is gonna be wild. But But I believe it. I believe it. I hear you. I believe it. And so. So we call back Oman said come back. We all need to be together. We need to be together. And but we kept CJ in the back room. At that point, CT and I had said our goodbyes. We had made our peace. We had sang songs. CT is an incredibly musician. So brought out the guitar play the piano. I mean, we were doing I had read oversee Jay, I mean, just we set our prayers. I mean just had done everything. So we made our peace. And oh my God came and made her peace to we go to bed that night. Same thing of like, you don’t want to go to bed. But at some point you do. And the next morning this baby was still alive.
Kasey Carmona 22:52
And so I told court I said Thursday that Thursday was CJ is what I call his dying day where he’s we had him in the back room. But we’re not going to do that anymore. Like it’s too sad. It’s not our son, our son is a child of life and love. And so we brought him out into the living room. And this, this is where life and death swirled in my living room. And I am here to tell you this is where CJ is life was absolutely beautiful because at this point, we really didn’t know if every breath was going to be his last and so we really cherished every minute and because he was off his oxygen support. This is where we got to have fun. So we we put both boys and strollers and we went outside and did stroller races. And we we had Teddy push his brother around in a stroller because that’s what you do with a normal baby. And we got out the kiddie pool and we see Jay wasn’t going to be able to be in a pool but but he was able to watch his brother be in a pool and splash around and and we were able to have dance parties where wires didn’t get in the way. And court was able to hold CJ without the wires and play piano with one hand. And we were able to bring CJ in to the bathroom for for bath time and just all the really wonderful normal stuff that once again moms and young moms and dads take for granted or get frustrated because they have multiple children in here. We were so grateful. For every moment that we were we would hold CJ and Teddy would coming climb into our laps to give CJ kisses on the forehead and and this is this is heaven on earth. This is heaven on earth. I’ve experienced it I’ve lived it. My son is live that my son loved it so much that he was he we were told he was going to go Friday, but he didn’t go on Friday. He didn’t go on Saturday. He didn’t die on Sunday. He didn’t die on Monday. We had these and total six days of glorious life. And but it was wild. My son’s organs started shutting down. And and he would he was smelling he was decaying. He rigor mortis, set it on his tongue. I mean, like it was, you’re holding, you’re holding a mostly dead baby, I joked around. I’m a big fan of The Princess Bride. And there’s the scene where where the man and Black is dead. And Billy Crystal says you thought he was dead, but he’s only mostly dead. And my son was only mostly dead. Because there was a part of him that just kept living. He was only taking two breaths every five minutes. And he did that for six days. Because we had set our peace, because we were in this fullness and richness of life and death. That anxiety that I think we feel, I think it’s natural to feel when a loved one is going to die is dying. I didn’t experience it because I was so focused on the present. And that is what the present can do for us is that when we’re so focused on the present moment, and the life that we have in that present moment, it’s just like, everything goes away, everything goes away. And that is a gift that we we do not have to have somebody who is dying to tap into. But but it does take practice to be present. And it is one of the gifts that my son has given me. Tuesday morning came along, and then the energy changed. The energy changed it, it. It felt like that was the day. It felt like we were kind of living on this bonus time. And and it was it was finally time and I did something that I hadn’t done before. And when CJ was growing on me, I felt this compelling sense to journal. And that morning, I read through essentially these love letters to my son.
Kasey Carmona 28:00
It took an hour. But I read every single one to him chronicling out the love that I’ve had from him since really, the beginning but But I started the journal, I got his diagnosis at 22 weeks, and I just wanted him to know like, I have loved you. I do love you and I will always love you. And if there’s one thing that I’m for sure of, I have to have faith that there’s a heaven I have to have faith that I’ll see my son but I do know without without a doubt that love never ends. And wherever my sin is now he is in love. He’s in the hands of love. And that I know that I know cuz I was his hands of love. And then I let it go. And my son finally did take his last breath. It was Tuesday May 25. It had all worked out. We had just just put Teddy down for his nap. He got to say goodnight to his brother. And just 1020 minutes after that. CJ did take his last breath you know I said this earlier in the podcast Your love has to go somewhere. And a love for my son was was so selfless. so vast, so deep. It kept it kept going and going. And it’s something that I I’m not sure I can take credit for i i believe If that the source of love for me, that’s God was the great well, that sprung up on a moment by moment basis for me to get out of myself. And to truly, but everything I have into the life and the death of my son. And so now I’m, I’m coming to terms with with what I did. And that’s a process in itself. And it’s a good one. It’s a good one. But it is long. And at times difficult. It’s one that I, I don’t regret, and I would do over and over again to
Victoria Volk 30:53
Y’all can’t see me. But I have been crying this whole time. So sorry,
Kasey Carmona 31:03
Thank you. It’s tragic. But every death is tragic. It’s all tragic. Every loss is tragic.
Victoria Volk 31:10
So tragic. Highlight something you said. But I gotta grab more tissues.
Victoria Volk 31:27
It takes, It takes courage to share your story. But it takes courage to face death, but embracing it not shutting it in the back room. And if there’s anyone listening to this right now, there is such a gift in facing and embracing death in an opportunity that could be missed when you shut it out. And if there’s anything that my death doula training taught me, and in watching my own father die, is that giving yourself and your loved ones, like little boy, the opportunity to grieve with you, that was such a gift you gave him? So I’m so glad that you had that mentor there in that guide to share that with you because that is a moment. And people might say he won’t remember that. He will. And I will say that he will.
Kasey Carmona 32:30
Okay, well, I will I it’s gonna live in his body. And I’ve sweet Teddy struggled a lot this summer. So did I Right. And, and there’s there’s organizations here in Atlanta, Georgia, that we’ve already tapped into, and his pediatrician knows the story and will watch Teddy for his whole life. And because I it was a beautiful death, he still saw death at a young age, but, but to your point, my hope is that it’s not a scary thing, that that’s so many of us believe it to be. And rightfully so. I mean, there are aspects of it that are scary, but but by embracing CJs death, we recreated this beautiful death. And I, I there was so much life and his death. But but that was CJ like CJ just kept saying, like, he brought the life and so
Victoria Volk 33:39
You answered his call. It was like, coming to look at these legacy projects and end of life doula training, when we’d work with a family, on hospice, it’s the idea of involving the whole family to create a legacy project. That’s what you’ve done. That’s what you did. And you have this beautiful Memento and kudos to that for that friend who got the photographer. I used to be a photographer, Julie now what a gift what a thoughtful gift. So if you are listening to this, and you’re like, I don’t know what to do, I don’t know how to help you. You’re listening to ideas today, like hear this? You know? This wasn’t the first loss for you. Was it? No. It wasn’t the last. So what has that experience? What has CJ taught you about grief? And about life and you know that
Kasey Carmona 34:44
It is I’ve allowed myself to feel every single thing I need to feel if something bubbles up. I don’t push it down. I don’t say I’ll get to it later. I just let it come Lenny’s the grief Decatur shared emotion is you gotta move it through. And so I, I am choosing to move it all through. And so I, I am grateful for those that are willing to sit in the side with me. But also, we can have some good moments together. And I think learning about learning about my own grief, I am somebody who’s pretty external. And so writing has been helpful, talk therapy has been helpful. Sharing CJ story has been helpful. These things have have really given me insight, more insight into to who I am, and, and also but, but how how see Jay’s life has affected more people than what I realize. And yeah, I think before CJ was born, it was Valentine’s Day, and I wrote a letter to him. And there’s a line in that letter that I’ve been thinking about a lot recently. And I wrote, part of living, the abundance of life is experiencing loss. We choose to tap into that abundant life. And that’s it. That’s just the thing. It’s abundant. And when it’s growing, and it’s so much and it’s so full, of course, of course there’s going to be loss for me was how quickly did I accept that loss is for me, I’ve learned the sooner that I can accept a loss, the faster I can get on with the grieving process. That’s that’s how it has worked for me. And because when you wrestle with the why, when you wrestle with some of these existential questions that you might not ever get answers, I found you’re just delaying the inevitable of the accepting. And then this healing process can begin. When we realize when we choosing to tap into this abundant life, there’s going to be loss, but loss, a loss is always going to be hard. But because something is hard, doesn’t mean that it has to be bad, there can be good, doesn’t mean that it is good, but there can be good in it. And that’s a perspective, that’s a choice to make. It is not good that I lost my son, that is tragic. And it is so sad. But we found good in the loss. And I think it’s because we accepted what was happening. And it allowed us the freedom to just be present and to feel all the fields. And at that moment when my those six days while my son was mostly dead. I will I will say I buried everything pretty deep. But I but I purposely did that because I I wanted my son to have the absolute best. And and I think that’s also something that we do as mothers we, we regulate, we choose when when to be vulnerable, and when to show what we need to show and that wasn’t the right time. And I’m proud of that choice. I’m proud that I made that choice. But now as Teddy is watching me grieve, he watches me cry. And he watches me struggle. And I just say mommy sad I missed your brother, because I want him to know I want him to know that. This is part of living the abundant life that we’re in court and i weakly say, we have such a good life. I think that there’s probably people out there that would say Woe is me. And I hate to say to you, but there’s still so much good out there that you just have eyes to see it. A heart to believe it. I think that’s what grief has taught me more than anything else is that there’s still so much good despite the hard
Victoria Volk 39:28
What kind of question says Teddy asked are things that he well,
Kasey Carmona 39:35
Yeah, not too many. He’s he’s going to be too. Oh, gosh, this month. So so he’s, he hasn’t really asked questions, but he’ll point he’ll point to CJ a lot. We have pictures of him up and we have our masterpiece painting hanging up and so he’ll point to that every night before we go. As we talk to Teddy n, as we say, nightie night and we love you, we go like this, we put our hand over our hearts and we say CJ is in our hearts. So if you if you asked Teddy where CJ he would go like this, he’d put his hand over his heart. And I’m sure the time will come will he’ll start asking Lenny’s suggested the book, the invisible string. And so we read that regularly. And there’s a part where it says, There talks about the uncle in heaven, and we, we say, CJ and heaven. And so we are an open family about it, and I am. I’m really thankful for that. And I use the D word I use die. Because I also think that’s important too, especially for, for sweet Teddy, who, you know, children take things so literally, and so if we, if we use certain language, I want Teddy to, to not be afraid of sleeping or loss, but but knowing like this is this is death.
Victoria Volk 41:09
Well, and not only that, but if you don’t share the truth, they make up their own stories. And as they will make up their own stories, wow. So it’s very important that you be honest and truthful, to the, to the extent that in language they can understand at the time.
Kasey Carmona 41:35
Okay, that’s good to know,
Victoria Volk 41:37
What gives you the most hope for the future?
Kasey Carmona 41:41
I’ve been feeling that the spirit of CJ is the spirit of generosity. And his life gave so much to so many. And I hope that we can be generous with the help of our friends and family and do some kind deeds, especially for the Children’s Hospital here in Atlanta, and memory and an honor CJ, that that gives me hope.
Victoria Volk 42:09
Do you want to share a little bit about because for those that may not be familiar with Kabuki because I’m not right, is that what?
Kasey Carmona 42:16
Yeah, commemorate, yes.
Victoria Volk 42:19
How rare is it? Is it genetic?
Kasey Carmona 42:22
It’s a genetic syndrome. Yes. And it, it’s genetic syndrome. It was de novo. And CJ, which means new to him. However, if somebody does have Kabuki syndrome, and maybe it’s a mild case, they don’t realize it, that it can of course be passed along. It is very rare. It’s, I think, point zero 32% chance of a child getting it and it was a fluke accident. I was it was unlucky as what doctors say. And it caused this one genetic gene deletion caused a slew of issues in my son, and it’s just wild to think about one tiny gene was missing. And it just, it just makes you pause and reflect on the miracle of humans, childbirth, babies. I mean, there’s just so much like, gosh, so anyways, the the syndrome itself, it’s called Kabuki because the children typically have these big eyes that kind of are slanted a little bit. And these big, beautiful eyelashes, and it was named from Japanese doctors who thought these children looked like an art form a theater form in Japan called Kabuki and so it’s named after this, this theater tradition that the traditional makeup is big eyes and big eyelashes. And so, so CJ had the big eyelashes. But actually, it’s a it’s a Carmilla future too. So that’s so funny. There was so much we were like, is that Carmona or, or is it just Kabuki you know? It’s hard to hard to know. Anyways. So it is very rare. And one of the things that helped us make our decision is in literature and medical literature. The cardiologist that also dealt with genetics could only find 12 cases and all of medical literature history of children that had both hypoplastic left heart syndrome and kabuki 12. I’m sure there’s more out there. But but only 12 had been written up, the odds were not good for us it was. It was essentially, five, did what we’ve ultimately chose to do. And said, We’re done with palliative care surgeries. Seven, did not live. And then three tried to do the next round of surgery, but but also the end, I guess, had lived but maybe didn’t live up until, like eight. And so that that helped inform our decision. And because it was just so rare for the to Kabuki syndrome can cause heart defects. But hypoplastic left heart syndrome is the most I know most is it is one of the top in severity of, of heart defects. And so that that is kind of the mack daddy of the mall. For this case of a genetic abnormality of the heart. And anyways, so. So there are several families out there, I’m in a kabuki parent support group, there are several families out there that that have children that are, are
Kasey Carmona 46:38
That are doing as well as they can with Kabuki I, I personally look at those families. And I see how hard it is. And that there is a part of me that, that is grateful that we did not keep our son alive, just to keep him alive. That is a very difficult statement. And I know that is incredibly controversial. And it’s just for our family, we chose quality over quantity. And I think the hospital would have kept CJ Alive for a long time. And I look at some of these children. And you know, CJ wasn’t having seizures just quite yet. But the seizures, we’re going to start and there’s just so hard, I just and you know, he would never be able to eat. I mean, just like, and with his brain not growing. He, he would obviously have some severe challenges to do any normal, quote unquote, normal, functioning. thing. So yeah, i My heart goes out to those families. Because it is it is a it’s so hard, and it’s worthwhile. But it’s worthwhile. Like it’s so it’s beautiful. And it’s I know that they’re doing the best that they can. And there’s this like, there’s just I think, I think for me, it’s just hard to watch children suffer. It’s just hard to watch children suffer.
Victoria Volk 48:16
Dr. Chris Kerr was on my podcast a while back and he’s a hospice doctor, physician and has researched and have life experience when those in hospice care and he was talked very openly about how medical community medicalize dying, and how society overall medicalized is dying. So that made me think of you sharing that. And I had that question in my thought in my mind, and you went right to it in and in your story, and ultimately ended up bringing them home, to have a good death, really. And that’s what he talked about in that episode in how, again, there are opportunities to really embrace that process rather than medicalizing it and having an experience of separation. And, like you said, denial, trying to throw everything but the kitchen sink at something that is inevitable. In the medical field, too. It’s like you’re not supposed to do harm. And I think as human beings, the spirit within us, it’s really hard to ask ourselves in those moments, like what would I want? And then do that for your loved one. Right? Yeah. So what would you like to scream to the world? You got a microphone and had
Kasey Carmona 49:45
Oh, man, I think you just said it. For me. It’s, it’s if you are in a place where just things are not going right. And you can see the writing on the wall, no one told us to bring that baby home No one, no one in the hospital told us to do that. It’s what we felt CJ needed to have that beautiful death. And because we were tired of throwing everything but the kitchen sink at at my son’s life and not getting anywhere, and then just seeing him more, more hurt, more poked and prodded and tested and, and our 15 days at home, were so beautiful. And I, I wish, if there are families that, that are wanting that or thinking that they can do that, too, but But it requires acceptance of really what’s coming, it requires a good team around you that you can trust and talk through. I mean, for us that palliative care team at the hospital was really important. And and it requires this very selfless love, to put all your feelings on hold, and to give trusting that deep well is going to supply what you need. And it will, that’s what love does. So I I really, I really hope that there are there are people out there that that might be afraid of death or afraid of the inevitable or, or afraid of what’s to come. But I’m practicing the present and being joyful in the moment because that is what we have right now. There is beauty. And there is good. And the now is all we have really to embrace it fully. Is that abundance of life.
Victoria Volk 51:45
Beautiful message. Is there anything else that you would like to share about any other losses that you’ve had been shaped by this experience? Maybe that were different or anything about CJ, you’d like to share? Anything?
Kasey Carmona 52:07
You know, I think for today, I think this is what I needed to share for today. Yeah. Thank you. Thank you.
Victoria Volk 52:17
Thank you for sharing, beautiful story of life and loss of CJ. But as you shared, he lives on in your hearts, and no one can ever take that. Again. Thank you so much for sharing your story today. I think it might need to take a walk and be in the present moment for a little while. You beautiful shares. Thank you so much. And where can people reach you if they would like to find me? Yeah, well, you connect.
Kasey Carmona 52:54
I I’m on Instagram right now. It’s just my first and last name and are on Facebook to its Kasey Carmona. Both of those would be great.
Victoria Volk 53:06
Okay, I will put the link in the show notes. Okay. Thanks. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.