Child Loss, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Ep 113 Ram Dass Learning How to Write a New Song with Grief
SHOW NOTES SUMMARY:
Ram Dass Khalsa is a singer-songwriter who, through the loss of his newborn son to Trisomy-18, learned how to write a new song as he learned how to grieve healthily.
It would take Ram Dass several years to learn what it means to grieve healthily, and growing up with “yogi” parents, taught him the importance of being in his body. However, he never learned how to be with his feelings.
Ram Dass and his partner knew they were expecting challenges ahead. At twenty weeks pregnant, they learned their baby boy would not thrive very long once he was born. Going against the recommendation of abortion, they felt it was important that they go through the process of his birth and his death.
They weren’t expecting their son to live a full day. Instead, they got to experience his life for three. After his death, everyone had their individual grief experiences, and it became emotionally too much for Ram Dass and his partner, and ultimately, they parted ways.
And thus, a new chapter of Ram Dass’s life and music began.
Even when we expect a loss to occur, there are no words or actions that can fully prepare a heart to say goodbye to another. The finality of death isn’t felt until the moment it happens. And for some, including Ram Dass, grief and loss become a pivotal experience that changes one’s life — for the better.
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CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. Today my guest is rom das Khalsa, known professionally as rom das creates music that is spiritually and emotionally restorative. His music opens the heart and stirs the soul. As a producer, multi instrumentalist, and songwriter. He inspires a unique potency through collaboration and improvisation that creates art greater than the sum of its parts. His constant dedication to render the beauty of human experience triumph, tragedy and beyond has led him to the world stage. He performed at the 2019 Grammy Awards, has played at Carnegie Hall, and continues to perform at venues around the world every year, ROM Das is at the forefront of a movement of musicians aiming to bring healing and solace to the world. In 2021, he recorded and produced a series of musical projects born from his own deeply personal human experience of joy and sorrow, collaborating with the duo, while ray to create the EP, and now he has wings a musical journey through his recovery and healing after the death of his newborn son. born into a family of professional musicians rom Das was raised to appreciate all musical genres and find the unique nuances of every song and composition he heard. He developed a near encyclopedic knowledge of wide swaths of the musical landscape, which he calls upon to create novel and moving approaches to music production and songwriting. Thank you so much for being my guest.
Ram Dass 1:32
Thanks for having me.
Victoria Volk 1:33
I listened to some of the new album, and now he has wings. And I just imagined myself, I would consider myself an old soul. Even as a young child and teenager. I pictured myself as those listening, especially my favorite was, Elegy for a yellow bird. Oh, cool. And I found myself listening. And thinking of myself, picturing myself laying on my lip laying on my bedroom floor, staring at the ceiling, and it’s a rainy day. Like, that’s kind of the feeling that it brought for me. And it’s, I would say, Your music is easy listening. Like it’s, it’s something that you can put on in the background, but it’s something that you can really just lay on your floor and stare at the ceiling and just let it move you. And so I appreciate that was my favorite, just wanted to share that.
Ram Dass 2:26
That makes me so happy to hear. And I I really appreciate the the feelings that you get when you’re listening to it. I mean, the the most important thing for me is that one you can put it on at any time, if you want to listen to it actively. There’s so much subtlety in it. But you can also put it on in the background and it doesn’t get distracting. And that’s really cool. So I guess it redefines what easy listening is rather than being sort of cheesy elevator music, it’s this idea that it really, it’s easy to listen to, and it’s easy to listen to for a reason. But also that it evokes some sort of feeling for you. That’s, that’s my goal.
Victoria Volk 3:06
Yeah. And can you explain just a little bit because I’m curious. So the cover art is like this yellow bird, right? So can you just kind of my own curiosity, tie the title of that song and that cover art together? Yeah,
Ram Dass 3:22
Yeah so the whole EP is about my journey, through finding out that my son had a fatal genetic condition called Trisomy 18. And then, his birth, his passing and recovery after that, after he passed, my partner and I, my wife and I, at the time, found a little baby Yellow Bird on the ground that could not fly. And we saw its mom in a tree nearby, and we took it upon ourselves to help it not get eaten, to recover and get back to its family. That song to me is is sort of like the feeling is is about trying to be able to help something when you haven’t been able to before. I mean, there was nothing we could do to help my son live, it was just the reality was the reality and he wasn’t going to survive. But then the care that loss brings to other things, the the wanting to help, both from a genuine place and also a genuine like, just wanting to help because it’s meaningful, because life is meaningful. But also the reality that part of that comes from a certain sense of desperation, because I couldn’t do anything about my son. So there’s like this hope and grief in it all the same time. So rainy day is kind of perfect.
Victoria Volk 4:56
Yeah, I guess and I think it just what You describe is like this compassion with wanting a place to go, like compat like to share that love with nowhere to go?
Ram Dass 5:10
Yeah, death and loss changes the fabric of how one relates to the outside world, for better or for worse for me. Ultimately, it’s been for the better. But not without a whole lot of grief and trauma along the way, too. So yeah, I agree,
Victoria Volk 5:31
Can you speak to what has been the most what was because I get a sense that you feel like you’re on the other side of it.
Ram Dass 5:40
Yeah, if there is another side, my life is totally different now than how it was, during that process, both my partner at the time and I have, you know, we separated and we have new relationships. And so we’re no longer together in that way. But we’re still very much family. And I think I went through quite a rebirth process of my own, trying to figure out what really is important to me. And the immediacy, the the PTSD aspects of my son’s passing, are no longer so immediate, I can still have moments where it comes up, where all wake up one day, and today is a perfect example, because we’re getting, um, we’re almost exactly a month right now from the anniversary of his passing and birth, both. And I remember the air being this way, you know, in the days before he was born. So it’s it’s bittersweet, but it doesn’t bring in the same adrenaline, the same fight or flight, the same need to try to change my feelings. And that’s maybe the biggest thing is that I’ve learned quite a bit about how to be with my feelings, how to have my feelings in real time. And that has been maybe the biggest thing in helping me cope and thrive in my life, rather than trying to avoid having hard feelings.
Victoria Volk 7:18
Did you have support? And how to do that? Or was it just you found naturally your own way? And what does that look like? Or what did that look like?
Ram Dass 7:27
Yeah, I got quite a bit of support, I don’t know that it was easy to find, like shirred, conventional therapy wasn’t very helpful for me, it’s very easy for me to talk about something intellectually and not feel it, essentially. And talking became a really easy way to actually avoid going through what I was feeling. Eventually, I got involved with an organization here in the Bay Area called medicine path. And they have been taught in Indigenous ways and work with plant medicines. And that, basically, through those ceremonies, through counseling through a bunch of activities, through through their organization, I really was able to relax, I was really able to step back and see that the pain was the worst thing I was going to experience from it, I wasn’t going to die from my feelings, and that I was able to have my feelings and that it wouldn’t hurt me further, and it wasn’t going to hurt anyone else. And in fact, the ability to have those feelings in real time would help me actually be happy. So the support was manifold, I would say because I was getting one on one counseling. I was sitting in the medicine ceremonies, I was spending time with people who are trauma informed. One of my best friends now as is basically counselor to the entire San Francisco Fire Department. And you know, just the ability to interact with people who are used to what it’s like to experience trauma helped me relax, you know, I gained a community of empathetic people who also were not going to pit in, pity me for what I went through, and we’re just going to keep loving me no matter what. So yeah, I got a lot of support. But I don’t I don’t even know that I was I didn’t know I was looking for that.
Victoria Volk 9:30
I want to differentiator that I hear and what you were saying initially was that, like talk therapy didn’t really resonate with you work for you. And I’m very much a thinker, and I’m in my own head too. And so that’s where logic like we try to logic our way out of grief. And, you know, we’ll say things like, I’m fine. It’s just, you know, I’ll get over it and it is what it is. It’s what happens you know, we try to bypass a lot and then just put it in a box and put it On the shelf and tuck it away and not really addressing it. Although you ask anybody who approaches their grief in that way, they’ll say, Well, I’m addressing it, I’ve addressed it. Right, but in a box and put it on the shelf, and I put it away. Absolutely not addressing it, though, right? Right. So what you’re telling me and what changed for you is that you took action, like there was action within, combined with that therapy, there was you were taking, you know, you were making steps forward, you were moving forward, you were suffering, but yet you were moving forward. And that’s what I say in grief. Like when I work with clients, it’s you’re already suffering, you might as well suffer and move your feet. And I that’s what I hear you were doing.
Ram Dass 10:41
Exactly, exactly. And in fact, some of the progress created more suffering, and some of the suffering instigated the progress. You know, my life was basically falling apart. What I was trying to do was take care of my family, put food on the table, basically do anything but take care of myself. And I thought that taking care of them was taking care of myself, but it’s very different. I don’t know that there was another way out. And this is the thing is, is logic says I was doing the right things. I was doing the things that felt appropriate for the circumstance. But my family members were going through their own version of grief. And we all go through it in a different way. We all need different things. And when you’re in that recently traumatized state, when you’ve faced a loss that big, I don’t know that you can take care of other people functionally, I don’t know that it would have been possible to make it through happily, I think we did the best we could. And it was really messy. And sometimes it’s that falling apart that actually creates the openings for new life and progress.
Victoria Volk 11:49
Did you have a knowing that your son wouldn’t be around very long after he was born? Did you did you know this?
Ram Dass 11:57
Yeah. 20 weeks, I was actually at Niagara Falls when I got the call that one of the screens came back very poorly. And I was in the middle of a tour. And then the last night of tour was when the ultrasound happened, we thought that my son was actually a girl, because I guess the test had said, had we didn’t do a genetic screening first. So we thought it was a girl. And then after the ultrasound, we found out that it was a boy and he had water on his on his brain. And his feet were kind of clubfoot and basically, then were referred to genetic testing found out that he had Trisomy 18. And we didn’t know that he’d be born alive. You know, that was definitely something that we were facing. And ultimately, we got three days, and we didn’t know if we’d get one. So we had a an awareness of what the reality was for sure.
Victoria Volk 13:01
Not at five months. So you had several months to go knowing this. Yeah. Yeah, I can’t imagine.
Ram Dass 13:10
I can’t remember much of how I felt except just kind of numb and scared. Basically, not a whole lot of room to feel sad, because it was like the trauma had already started by that time, essentially. And we’re all very heavily willed people, I guess we each had a conviction of doing this thing very well, which ultimately didn’t work, as I said, but we were already processing months before he actually was born. Talking about it being scared of it. We weren’t I don’t think we were really making much of it, except to be there in that situation.
Victoria Volk 13:56
Did you hear a lot of unhelpful things during that time?
Ram Dass 14:00
Yeah. I mean, the the doctors consider Trisomy 18. To be, they call it incompatible with life, which is a really intense diagnosis, a really intense thing to say, there are kids who have Trisomy 18, who live longer. And then there’s what’s called Mosaic Trisomy 18, where half of the chromosomes are a part of the crumb or part of the body has this triplicate of the of the chromosome. And those kids live even longer, often. But what we got was they were basically saying we should abort. And I respect everyone’s choice on what they want to do. In that circumstance, and for us with this baby, that didn’t feel like the thing to do it actually felt like we needed to have him and lose him, which is very interesting looking back on it.
Victoria Volk 14:58
For those that may be listening Not sure. I don’t I don’t necessarily know the answer myself. Is that genetic?
Ram Dass 15:05
Yeah, I mean, it’s basically like Down syndrome is triplicate of one of the chromosomes, trisomy 18, is triplicate of a different chromosome. And when certain chromosomes are three, rather than two, it can cause greater problems, or lesser problems, each chromosome codes for different things. And in this case, the 18th chromosome is not great for, you know, healthy adult people, essentially,
Victoria Volk 15:35
May I ask, is this something that you have to keep in mind moving forward having a family?
Ram Dass 15:42
Nope it was totally random. And that’s, that’s great and sad, all at the same time? No, I don’t, I don’t have to worry about that. We actually think that it’s possible that there were pesticides in the water where we were living, and that may have affected it. I’m not a scientist. So I don’t know if that’s actually true. But these things happen, unfortunately.
Victoria Volk 16:05
What was the biggest aside from, you know, finding the support that you didn’t know you needed and finding it and working through and transforming that sorrow and grief into something positive? What were you doing, then? What did you learn about self care in that process? And what does that look like today?
Ram Dass 16:24
Oh, that’s a really great question.
Victoria Volk 16:28
Especially as you face, you know, an anniversary and things like that.
Ram Dass 16:33
Yeah I suppose what I’ve learned is essentially that there’s very little, that’s really a crisis in my life, I have the ability now to step back and actually take time to do something, I don’t feel the impulse to try to make something happen out of response to a body feeling that I’m having the idea that our thoughts happen, and then body feelings happen in response to those thoughts. And that we don’t then need to create stories on top of those feelings, like being able to break that loop has been one of the biggest things for me. And that’s what I’m thinking about. And coming up on his anniversary in April is, I know, I’m going to have feelings, I don’t know what they are. But I want to give myself space and permission to have those feelings. And also not to feel compelled to do something for someone else. Or basically, I’m not going to be codependent to someone else. Or to myself, I’m just going to try and give myself space to have those feelings. And it may be that I go through the day actually feeling really happy. And you know, that’s cool. That’s totally fine. I’m essentially unattached to what feeling states I’m going to have. And I try to go into each moment each day, not trying to control how I’m going to feel, I’m just going to do what I can to take care of myself, eat well sleep, well keep my room clean, keep things feeling good around me. And then how I feel is how I feel. And I know that I’m not going to be a jerk to anyone in response to my feelings. So I don’t have to worry about that. I know that the people around me are not going to criticize me for having the feelings that I’m having everyone understands what I’ve been through, as best as they can. And it’s taken time, I would say the first couple of years. That definitely was not the case. It was It was rough.
Victoria Volk 18:41
What I hear you saying too, is that you created an environment that would support your internal environment and internal healing. Exactly. Yeah. What and you bring up a good point, like clutter and messiness around us like that is really a reflection of what’s going on in our minds, right?
Ram Dass 19:01
Yeah, absolutely. Absolutely. And, you know, for neurodivergent people, making mess can be the thing that feels safe. But as I’ve gotten older, I’m 34 Now, I have a desire to actually keep things clean, I have a desire to organize things. Whereas in the past, it was just like, Whatever, I’m just gonna keep doing what I’m doing. The thing that I’m working on is the most important thing. And my environment, I’ll just be flexible to that, whatever. But now I actually care about how I’m sleeping. I care about how the room feels, I care about my surroundings a lot more. And I think when my son was born, it would be what it was. 2014 So when I was 20 I can’t do the math 26 Something like that. Something didn’t shift for me until I was like 30 where or actually cared about doing the dishes, that type of stuff became important biologically at some point, whereas it wasn’t then. So I think also just I suffered the consequences of having a young brain. And now I’m older.
Victoria Volk 20:15
My kids all the time they, you know, when it comes to decision making and doing things, it’s like your frontal lobe isn’t developed until you’re like, 25. And so you’re just on the cusp of that, you know, and that’s a lot of change and loss to experience at that age, when you’re really just coming into yourself.
Ram Dass 20:33
Yeah, exactly, exactly. The executive function was barely there. And it was much more my behavior was, I would say, driven by consequence, rather than by inspiration. So it was doing things out of the fear of something else rather than doing things because that’s what I wanted to do. And it’s taken time to shift my life into a way where it’s like, the things that I’m doing in my day are actually things that I want to do. And that’s I have great privilege in saying that, and it’s taken a lot of work, but but that’s the reality, now,
Victoria Volk 21:08
You found the flow of life to go with the flow of life, it sounds like,
Ram Dass 21:13
Yeah, and it’s not perfect, you know, I still the idea that I could control my setting so as to minimize hard feelings, that’s again intellectualizing and trying to posture around something that doesn’t exist, basically. So I still deal with grief on a daily basis, anger on a daily basis, everything that I was trying to escape before, is still here. But I’m in a much better position and have a have more resilience, and more of a friendship with those feelings, in a way that I just wanted to pretend that they weren’t there before, or really didn’t want to face them.
Victoria Volk 21:58
Was the loss of your son, your first loss?
Ram Dass 22:00
No. I remember, my grandmother died when I was three, I still remember her funeral. My grandfather died when I was in fourth grade, I still remember his funeral. My mom’s sister who I loved dearly, she died in the year 2000. There have been there have been a few big losses in my life before him. But his made me change how I experienced death, I don’t, I experience it as being a teacher now, in a way. And it gave me a lot of perspective, I think being there for a passing being there for a death, and especially so close to a birth, it’s so easy to see that they’re just kind of two sides of the same coin. I’ve seen now multiple times, that it takes work to die for a lot of people, and that there’s a sacredness to it. It’s not it’s not this traumatic thing, the body’s doing what it does. And the scariest part is just the absence of that person. But that has brought so much perspective to the life that I get to live. And the sacredness that I can have in my day, the amount of fun I can have in a day, the amount of beauty I want to experience in my life. Like, I want to pay attention to those things now in a way that I didn’t have time I didn’t have the mental or neurological bandwidth to to appreciate before he passed.
Victoria Volk 23:46
what would you say to someone who has just lost a child that is listening to you, because you can’t rush that right? You can’t rush that evolution of grief is now my teacher and embracing that that’s really difficult to you know, I’m sure if someone would have said that to you. Within a short period of time of him passing you would have wanted to probably punch them in the face. So what would you say to someone who has maybe experienced the loss of a child and are just struggling with that?
Ram Dass 24:21
Yeah, I It’s, even though I’ve been on the on the receiving side of people giving condolences. It’s still not easy. It’s it’s no no easier to talk to people who are experiencing them that themselves because it is so personal, it’s so vulnerable. At times it feels so hopeless. I would just want them to know that they have people that love them, you know that they’re not alone, and that there are people who who want to be there for them and if they can just take as much time as they as they need. And I know that’s really hard. because we’ve got to work and make money and feed our families and take care of other children and parents, and you know, there’s, there’s all sorts of demands in life. But just to give permission to let it all out. Honestly, if there could be a bucket that all of our feelings go into, I would encourage people to whether they’ve experienced loss or not, like life is just hard enough, like, let your feelings into the bucket, let it move, that’s the best advice I could give for anyone, honestly, is just like you’re carrying a lot. And it’s really understandable. And you have every right to empty it from now. And now. And again, I have a friend named Rachel Kaplan who has a program that’s basically called Emotional potty training. And it’s the idea that just like needing to go to the bathroom, you have to do that with your feelings, too. Otherwise, you get constipated, you get backed up. And that is definitely a philosophy that I subscribe to, and would encourage people to look into. But gosh, if if you’ve lost a child, just my heart goes out to you. It’s That’s the hardest thing. It really is. And the present moment that you’re in is what matters. And just take care of yourself. Just just try to surround yourself with a lot of really, really good loving people. And if you need to be alone to No problem, just do, do what you need to do in your own time. And that’s good. That’s good enough.
Victoria Volk 26:39
That’s good enough like that. Actually, that’s brilliant, too. Emotional potty training. It’s actually really brilliant. You know, one thing too, I was thinking about when, you know, like, what does that actually look like when you know, we say, give space for yourself. And you know, it’s hard to find the time to you know, if you’ve got busy demands of family and work and things like that. So like, one idea that I thought of just listening to you talking is going in parking somewhere and just screaming in your car, like just screaming? Or do you live out in the hills or somewhere just you know, have a pasture or something, just go walk in the pan, just scream yourself, you know, something like that? Do you have other ideas,
Ram Dass 27:21
I love that the pillow method is great. You know, pillows can take a lot of abuse, loving abuse, they can you can scream into them, you can pound them, that’s really helpful. Moving your body, the walking is really helpful. Because you know, one of the problems with PTSD, one of the things about fight or flight is that you’re not in your body anymore, you’re actually disconnected from feeling your body. So if you can go take a hike, go take a walk, go swim, go, whatever that helps you feel your body that will help reregulate, and that may actually mean being able to feel like these are all ways of trying to get you to feel your feelings again, because the numbing is so easy to do. And there are so many ways, especially with cell phones, and Netflix, and you know, there’s so many ways we can distract ourselves from the feelings that we’re having the light is really helpful. Just try to try to move, try to vocalize if you have access to talk therapy, like it didn’t work for me. But that doesn’t mean that it’s not helpful. And I don’t know that I could bypass that step either. Like I think if you have options, just do something. That’s that’s really helpful. That’s progress. And you don’t need complete healing from every single visit, every single modality that you do a walk is not supposed to make you suddenly feel like the worlds Okay, again, it’s just like, it’s a way to maybe get 30 seconds of peace in your day. And hey, if you can get 30 seconds, that’s a can feel like great relief. Yeah, I just encourage anything that gets you out of here and into your body out into the world, talking to someone, that’s, that’s all helpful.
Victoria Volk 29:16
I look at healing like, kind of like compound interest. You know, it builds on itself and I look at healing you know, just as it took years and years to build the sorrow and the pain and you know, accumulation of losses that have happened over the years and and all of that grief that has stacked on itself. That didn’t happen overnight. It it accumulates, right. And so I look at healing the same way is that every little thing that you do, can lead to the next thing, right? You may try talk therapy doesn’t work for you, but it leads to something else that does exactly and so I think whatever is a part of that path. It’s just listening into your own intuition and those nudges when you when they come across your way and just listening to those nudges, doing something about it.
Ram Dass 30:11
I love that I totally love that. It’s, it’s, there’s no end goal with healing. And let’s be honest, someone else is going to die. Like, you know, the, the losses in our lives are not going to stop until we do. Like, that’s, that’s the truth. So with the understanding that we’re going to face more grief, we might as well get better at facing it. And time does help. But then there’s another thing and there are more things to be sad about, there are more things to be happy about. And so I agree build that, build that compound interest of, of healing and, and you’re, I feel like that’s what I’m calling resilience. It’s the baseline that you have to deal with what’s coming up. And it does fit, it’s hard at first and it does build over time.
Victoria Volk 31:09
Well, and with that comes awareness, because as you get a little bit further along in your path, you can look at something might come up, right, you might feel this is familiar. Well, this is what I used to do. And this happened. Oh, but this is how I this is how I’m addressing it now and you see the progress, right, you can see your own progress. Yeah. And that builds confidence to and how prepared and emotionally sound that you can be when crisis strikes or life becomes chaotic and, but sometimes to when those moments happen, like everything just goes out the window and you kind of you know, might feel crazy for a time and that’s okay, too.
Ram Dass 31:56
Exactly. I I love that and think that permission to not be okay, is important. No one is holding us to a higher standard than we are to ourselves. So if you just can’t do it for a day or longer, it’s really not the end of the world like it’s okay. So permission to fall apart, I think is really important. And then you have maybe a little less pressure on yourself to perform. Like, I feel like so much of recovery, especially in a capitalistic society is, well how soon can you go back to being normal? Like, there is no normal anymore. And the expectation that you should be anything other than how you are is bogus to me. So yeah, space space and a lot of self compassion. And not in a I’m doing so great sort of way. But just in a It’s okay, it’s totally fine. Do what you need to do. Like, if there were I sometimes imagined that there was this like, mystical beings sitting on my shoulder who’s just like a very wise jolly person. Who whenever I felt like I wasn’t doing something, right, was just there going doing great. Doing great. Don’t worry, you’re doing great. And kind of going back to that and checking in with that feeling like, oh, this is okay, too. This is fine. Okay, that that really helped.
Victoria Volk 33:37
What has your grief taught you? Now that you are, you know, ROM das 2.0 After this devastating loss, what has grief taught you that you can reflect on now?
Ram Dass 33:52
I think that there’s the opportunity for beauty and basically any moment of my life. I feel very rich, having holding hands with grief. I feel like I experience the world in a way that a lot of people might not get to, which is that interactions with other people are really precious, because it all might go away in an instant, the wind, the feeling of water sunsets, sunrises. I feel like it’s all less of an inconvenience or something that’s just happening and more of a blessing and something to pay attention to. So ultimately, I think grief has taught me to pay attention to what’s going on around me and what’s going on inside of me because of the limitation of time. fact that it is also temporary. It taught me a new perspective on how to interact with the world.
Victoria Volk 35:00
How do you remind yourself of those things? You know, I, what it sounds like to me is this this gratitude, right? to immerse yourself in gratitude and I, it’s so easy to get caught up in day to day tasks and just to live right every day doing things that require us to work or like even just taking a shower, like just the appreciation, how do you hold on to that perspective? Like, what? Do you have a trick for that? Or?
Ram Dass 35:29
That’s a great question. Sometimes I need to cry, honestly. Because if I’m not feeling like, in a way, the gratefulness for the world around me, the noticing of the beauty is now baseline for me, that’s, that’s me functioning well. If that’s not happening, then I need to check in and see what’s going on. And often, what that means is, I’m working too hard, I’m not taking care of myself in some way, I’m not feeding myself, I’m not sleeping well, or I’m overly anxious about something, and being able to admit that I’m scared or sad or angry, and then have that feeling, then turns it flips the switch. And it’s like, being able to fully cry, being able to be fully angry, not saying at someone, but just like, express the feeling, or just feel the fear. It’s like, that’s part of the formula of happiness. And I think there’s an easy or a misconception intellectually, that being sad, fearful or angry means that you’re not happy. But to me, there’s a happiness includes all of having all of the other feelings. Because the happiness for me feels like a holistic understanding of being human, it is the appreciation of being human. So if I can cry, if I can feel those feelings, it’s like the switch goes on. And suddenly the worlds in Technicolor again. And then I think about what can I do with that would make this day this activity is whatever’s right in front of me feel good. And it’s often quite simple. And then there’s a way to be creative about that experience. So say, I have zoom calls for work, like, you know, that’s all it becomes fun, it becomes a a, an a special interaction, put on music that I really like, I get to make music. So thinking about what I want to express in that music, all of these things suddenly become more apparent, as I’m less bogged down by my own anxiety or cynicism.
Victoria Volk 37:47
I love now something that I need to apply in my own life.
Ram Dass 37:52
This is regular regular for me, too.
Victoria Volk 37:54
Yeah, I mean, you get so tied up and wrapped up around the axle of life itself, like the to dues and the obligations. And, you know, we often do forget just to really, truly check in. And if I’m not appreciating this, that is because my attention is somewhere else. That probably won’t matter. Three months from now, five years.
Ram Dass 38:16
Probably not probably not. Right, with a few exceptions. Probably not. Yeah. Yeah. And
Victoria Volk 38:23
A lot of weight, and stock in a lot of things that really just don’t matter.
Ram Dass 38:30
Right. Right. And it’s fun to like, I think there’s a certain level of entertainment, in getting emotional about things that should not necessarily be so weighty. But then having that perspective and just go, oh my god, I love what I’m doing. I’m so wrapped up in this thing, and it doesn’t matter, even that relief can be massive. And then being able to not put pressure on ourselves about those things. It’s just like, okay, so all I actually need to do is show up and be kind, like, that’s a really simple job. And then the risk, all the other responsibilities that we’ve put on ourselves can be a lot, a lot less.
Victoria Volk 39:17
And it’s to be kind to ourselves first. Now, if I’m not going to do this thing, or if I’m doing if I’m sacrificing this to do list for following my curiosity, or following my inspiration, or following my flow, and this other thing, or following my desire to spend time with this person, you know, it’s Yeah, yeah. I’m just reflecting out loud. Yeah. Based on what your shared so it’s, that’s good. Yeah. So how has I mean, I kind of alluded to at the beginning, but your music has changed because of this experience. You’ve had and how I imagined, you know, because grief changes everything in our lives and it impacts everything in our lives. It impacts our music, music. I didn’t mean I mean didn’t mean to say music, but I’m sure it did. But yeah, well, yeah, it does. I mean, every, whatever our work is, right, whatever our career is, it affects that it affects our money and reflects our relationships or reflects how we see ourselves. Like, it just blows up everything in our lives. Someone said to me earlier in a podcast interview, it’s like, when you have these waves that come up, he’s was recounting how he found some keepsakes of his mother’s. And she’s been gone for almost 40 years. But he had never seen these things before. And so now all of a sudden, you know, she was a child when she died. And he’s seen these things. And if he says, feels like a shipwreck, and stuff is just coming onto the shore, and I’m just having to look at these things. I just thought that’s a beautiful analogy. But that’s, that’s how grief is it can feel like a shipwreck, time and time and time again.
Ram Dass 41:09
Yeah. And it’s fluid like that. It really is. For me, grief is very watery. And I’ve actually incorporated that into my music. There’s a song on the on that EP, and now he has wings, that’s called the water poem. And it’s, it’s grief. It’s all the feelings, it’s and also the fact that, you know, I found out about my son’s condition at Niagara Falls, it felt like the water was carrying the message. And there’s water, we are water and all of that. So water is a big theme that I play with, with music.
Victoria Volk 41:48
Well. And we are made up of mostly water, right, exactly energy, we are energy, there’s a commercial for a car and electric car. And it talks to talks about how we are electric, like we are made of electricity, just like these electric cars, right. And just as like an electric car needs to be recharged and the battery and needs juice and all of that, like we are no different. Totally no different ingredient we can deplete, deplete our energetic battery, and just everything goes haywire. And I’m a Reiki Master too. And so I deal with energy and yeah, and, and all of that. But how, like, how do you feel? Would you not that you would go back to rom das one point? No, right. But do you look back and just think like, what are the biggest takeaways of how life was before and how you were living your life before and what you believed maybe about grief? Versus Now what was the understanding that you had about grief? Like what were you raised to believe about grief.
Ram Dass 42:55
We didn’t really talk about our feelings much I was raised in, in a spiritual community that basically had the idea that if you do enough Yoga, you basically don’t have to deal with your life’s problems, that yoga was the way through anything that you’re dealing with in your life, whether it’s your feelings, or relationship problems, or whatever. So you name it, there was a, an exercise for it a meditation for it. And to me, it’s just not true. The biggest takeaway is that I did know that I needed to actually grieve and I didn’t want to do it. And ultimately, the only way to do it is to do it. The only way through it is to go through it. And I don’t know that I could have done it any differently. To be honest, I don’t know that knowing it. Any deeper would have changed a thing about what happened then. Because I needed whatever I needed to get out of my own stubbornness and learn that I’m okay. And not necessarily in the sense of like, a self aggrandizing I’m okay. Or I’m fine. I don’t need to do anything. But like, Who I am is good. I am okay. And having all my feelings is also okay. And acceptable and needed. So yeah, I mean, I don’t know that. I could have done it any differently. Because I just had to have those feelings in those life experiences. And it was painful and messy. And especially when you’re a smart person raised very intellectually, you know, you know how to think your way out of problem solve your way out of so many situations. We’re just going to find the next way to avoid and come up with some clever way through, but it’s like, the cleverness was actually the problem. The way through was actually very simple. And it was basically softening to myself and allowing myself to be who I am, and have the feelings that I have as a biological being not as a spiritual person, like, This, to me is very not woowoo in any way. It’s just like, I have biology, my life circumstances were traumatic, there is a certain thing that needs to happen to help regulate. And it comes in with a spiritual component and an intellectual component of validation. And understanding that this is good at this, that I’m, I’m good for having that, that I’m human for having that and appreciating it.
Victoria Volk 45:44
It’s very interesting that you brought up how you were raised in how yoga was such an integral part of your upbringing, because I almost brought up yoga when you mentioned about being inside your body. And it just really brings up for me that, you know, what we talked about in Grief Recovery? I’m a grief recovery specialist is that, you know, we have these stirrups that we often short term energy relieving behaviors that we resort to when we’re not when we don’t want to feel what we’re feeling, right. And just based on what you told me like it just as an example of how exercise, right, like exercise can be a sturb. But yoga is an exercise, it’s an exercise of being in your body. Yep, it can be a sturb it can be a way that people believe that there be like that by being in my body. I’m somehow healing myself, right? But if you’re, you know, focused on your breath, and you’re in the moment, you’re, you’re in your body. But are you allowing yourself to feel exactly in that moment? That doesn’t mean you’re feeling?
Ram Dass 46:54
Nope, no. And that’s, that’s what’s so funny about all of this. And what’s like, maybe ironic about the whole process is I could have chosen to feel with any activity that I was doing. And maybe that’s the takeaway is, the allowing of having feelings can happen in any activity, and the denial of feelings can happen in in any activity, it’s the way you do it, not the activity itself. So while a lot of things on the outside and performatively are the right thing to do, there, the truth is, you could be completely absent while doing those performative things, you could still be doing these stirpes, as you’re talking about, you can still not have your feelings while doing everything that you’ve been prescribed to do. So yoga can be super helpful. If you can be there with yourself and your breathing and your having your feelings to walking, running, even just sitting and reading a book like that can either be distracting or can inspire feeling within you. So hard to prescribe activities when it’s like, you know, pick any of a million off of the list. But with the caveat, you have to take a dose of having your feelings to.
Victoria Volk 48:17
I have not thought about STURMS in this way, that if you are allowing yourself to feel while you’re doing them, even if they’re healthy, right? That’s the thing like people think, well, it’s healthy, it’s good for me, it’s self care. Yeah. But maximize it then. Right? Exactly, is that healthy thing?
Ram Dass 48:40
Exactly. And ultimately, if you can get to being able to have a good cry, and a release the full emotional release. For me, I go back to regulating way faster. It’s like the amount of time that it takes to actually get there is a lot shorter and a lot less tiring, then perpetuating not having the feeling. So in a lot of ways, I think one of the most fatiguing things about grief is the fact that we’re not really having it, in the sense that we’re not moving it in a lot of cultures. There’s a an understanding that grief needs to be witnessed in order to be fully processed. And they do that through ceremony in a lot of places where it’s actually they’ve created a ritual that is like, Look, our ancestors can’t have feelings. They don’t have grief, your grief feeds them. So give them like go to the altar and give them your grief. And then you will be rewarded and I you know you feel it biologically, if you let it go. Suddenly your body goes oh, I’m okay. You know, you might be exhausted, of course. But there’s a settling. There’s a regulation and a soothing that can happen. Tangential way of saying that What we’ve been saying you gotta gotta do it, to get through.
Victoria Volk 50:05
Got to feel it to heal it. Exactly. So what gives you the most hope for your future?
Ram Dass 50:11
That’s a great question. I don’t think about my future a lot. That gives me a lot of hope. I don’t feel very preoccupied with what’s going to happen in the next day. I don’t feel preoccupied and what’s going to happen in the next five years, I’m really quite focused on what’s happening in the moment. And in that given day, and yeah, I plan the week I plan the month. I know what’s I know what’s happening, hypothetically, from now until July, and I have projects booked up for the rest of the year, but like I’m actually paying attention to today. And that, to me, is the most hopeful thing, because that’s where everything’s happening. The future is undetermined. And I would just be posturing about something that I know nothing about. So I just, I just try to stay in the present moment, and appreciate what’s here.
Victoria Volk 51:02
I had heard once and never even occurred to me, but how you spell present is a present that you give to someone a gift, right?
Ram Dass 51:13
Yeah, they said, Kung Fu Panda. Yeah, it’s brilliant. It’s totally wrong. It’s true. It is the gift. It’s the gift that’s here. And again, like, because I was raised in a spiritual community, I am very anti woowoo. In my own self, like, it’s just my childhood, like, you know, your parents feeding you steamed broccoli, there’s a certain like, but the truth is the my own happiness, my own good feelings come in thinking of not really thinking about the future or the past and more just what there is in front of me, that feels very satisfying to me.
Victoria Volk 51:50
You bring up a question that came to me in what you said. So do you feel like that relationship with your son has continued? Do you feel? Do you feel this connection to your son? Still?
Ram Dass 52:07
Yeah, I think my relationship is maybe through what I do. And through my experiences, I don’t feel like I’m communicating with him. I don’t feel like he’s necessarily sending me messages. But I’m also not looking for them anymore. Like that was something that I felt like I needed to do it was the instinctive thing after he passed for a while was just like, look out for the signs. At this point, my life is sort of a reflection of what I’ve learned and recovered from. And I feel like that’s the biggest gift. And so what I get to do, who I get to be around who I get to talk to, that all feels like him living on in me. And the fact that I’m getting to make music now that is about him. That’s dedicated to him. That’s, that’s what I got, basically, and I think it’s big. And I also feel a sense of a certain sense of closure, in a way because I didn’t have the space to have my feelings about his passing. I didn’t have the space to grieve until years later, until the last couple years, honestly. And now being able to make something beautiful that is touching other people too. It’s it’s so beautiful and rewarding. So I feel like the music is him living on it’s, it’s not Yeah, I really feel like that’s him living on in me.
Victoria Volk 53:33
That’s beautiful. Thanks. Where can people listen to your music and find you if they’d love to connect with you?
Ram Dass 53:40
It is everywhere. So Spotify, Apple Music, Pandora, you name it, it’s there. I’m on Spotify as Ram Dass R A M D A S S there is one other very famous Ram Dass. I’m the other one. And my EP is called and now he has wings. I can also go to ramdassmusic.com And all of it is there. And I’m on Instagram as @ramdassmusic Twitter @ramdass I’m around.
And I will link to the show notes. Awesome. Oh, that is there anything else you’d like to share?
I just I’m really grateful that that there’s a space to get to talk about these things, to talk about grief to talk about death and loss in a positive light. Maybe positive isn’t the right word in a productive way, and an appreciative way because for me it it really is not an existential tragedy. Like it’s it’s the truth about living is that there is loss and I’m always grateful when there’s someone like you who’s not only willing but eager to have these conversations and try to give a little solace and hope for people who are not feeling that right now, because of what they’re going through.
Victoria Volk 55:06
That’s perfect. And thank you so much for being my guest.
Ram Dass 55:11
Thanks so much for having me.
Victoria Volk 55:13
You remember when you unleash your hearts, you unleash your life. Much love.
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:
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CONNECT WITH KASEY:
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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.
Child Loss, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Michele Benyo | A Mother & Daughter Living Forward After Loss
SHOW NOTES SUMMARY:
The heartbreak of a parent losing a child is a pain like no other. But what about the sibling(s) left behind of the child who dies? When her son, David, was four years old, he was diagnosed with cancer. After a 2 1/2-year battle, he died when his younger sister was 3 years old. Michele shares her perspective of guiding her daughter through sibling loss while navigating her own.
Michele of @goodgriefparenting shares how grief is an unavoidable part of life that we will carry forward, and we can still live well and enjoy life. She adds her thoughts about appearing strong for others, which often leaves grievers feeling isolated because, although they may seem strong, that doesn’t mean support isn’t needed.
Michele’s work focuses on offering support for parents of child loss who also have other children navigating sibling loss. She offers three suggestions as well as many other helpful and supportive suggestions for parents who desire to be positive grief role models for their other child(ren) experiencing loss.
“Grief is in two parts. The first is loss. The second is remaking of life.” – Anne Roiphe
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 or anyone you know is struggling with grief due to any of the 40+ losses, there are free resources available HERE.
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Victoria Volk 0:08
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. 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 alike, spread hope and inspire compassion toward 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.
Victoria Volk 0:56
Welcome to grieving voices. Today, my guest is Miss Michelle Benigno. She is a certified Grief Recovery specialist parent, mentor and founder of good grief parenting, whose purpose is to support parents who are raising young bereaved siblings after child loss. Her mission is to be a voice for the youngest of Grievers and to help parents nurture and understand the unique needs of children who have lost a sibling in early childhood. When not helping parents, Michelle enjoys adventures with her daughter dinner with friends seeking out Keto Recipes to satisfy her sweet tooth, and hiking the woods and light country of beautiful Minnesota. Thank you so much for being here, Michelle, as well.
Michele Benyo 1:35
Thank you, Victoria. I’m glad to be here.
Victoria Volk 1:38
And what I’m excited to have you here too, because you are a fellow certified Grief Recovery specialist.
Michele Benyo 1:45
Yes, ye.
Victoria Volk 1:47
I know your backstory. But my listeners don’t. So would you please share what brings you to grieving voices today?
Michele Benyo 1:54
Well, I have always been in the field of children and families and had my own two children and was parent educator and early childhood family education, which is part of all the school districts in Minnesota, when my four and a half year old son was diagnosed with cancer, and my daughter was 15 months old. And we battled that that demon for two and a half years before my son died at the age of six. And his little sister was three and a half. And she said to me, mommy, half of me is gone. When her brother died, they were very close. They were best friends. It was her only sibling. And here I was in the field of early childhood parent education. And I was so aware of, you know, the needs of kids this age, but this was just parenting 101 all over again, it was just not the same thing. And I and this was, this was 20 years ago. So my daughter is now grown. And back then i i thought i had access to a lot of resources that a lot of people may not readily have. And yet I could not find anything that really helped me know what what she really needed and what to do for her. I mean, she said half of her was gone. That’s heartbreaking. And it’s just not okay. And what do you do with that as a parent, her whole lifetime was ahead of her. I really knew then that as a an early childhood educator, I needed to provide this resource. But I found over the years as I studied it, I found every book that I could and over the years, there were a few more resources that became available. And I just learned everything about sibling loss and early childhood loss that I could and now I am in the past few years since my daughter’s graduated and is now a young adult I’ve I’m starting to just really tried to reach out to all the families I can who have this little child who probably didn’t say to them, mommy, half of me is gone, but yet had that feeling of really having lost a sense of self when their sibling died. So that’s really what my what my mission is. I say that her her simple six words are what really defined my very specific purpose of working with families who’ve lost a child in early childhood, because that’s that formative time of life when not only are coping skills and social emotional skills being developed in kids, but just that whole sense of who they are going forward.
Victoria Volk 4:36
I’m a mom to three kids and I can’t even imagine I’ve interviewed several parents who have lost children and I that’s a loss. I can’t even wrap my head around and like a friend of mine shared a song with me the other day just kind of because I was recently reminiscing about how fast time flies and just you would never even the podcast recently recorded I was just think reflecting on it.
Victoria Volk 5:00
Even with a child loss, you would never take away that relationship or choose to not.
Michele Benyo 5:05
Right.
Victoria Volk 5:06
That relationship or yes, even though it hurts so badly when you lose in person, right? But right, it doesn’t make it any easier. So how did you first really make it through those early days without the resources you personally with your grief and in your marriage?
Michele Benyo 5:26
Mm hmm.
Victoria Volk 5:27
And then address with your daughter,
Michele Benyo 5:30
I knew right away that what I needed was or what I wanted was help for her, I really have to say that her loss so far overshadowed mine in my mind, but I also, we were connected with children’s hospitals in Minneapolis. And they at that time, had a wonderful bereavement program. And I really credit, I mean, that the person who was the bereavement coordinator at the time really was a lifeline for me. And so I had that support through what they offered. And one distinction that I, that I want to make with families is that when you have this tremendous loss, and it is so devastating, and parents never will get over it, they have to learn to assimilate this grief and this loss into your life going forward. And when you have young children, it’s like their life can never be quote, unquote, normal again, because it’s just, it’s got this presence of grief throughout the rest of their life. That doesn’t mean we can’t be happy and enjoy life, but it just really does change things. But what I want parents to know is that counseling and therapy is not the only way to get the support they need. I knew I didn’t need therapy, or a counselor, the the grief support group was really helpful to me, but then I was on to Okay, now how do I get my family? You know, how do we go? How do we live forward and be happy. And the grief support group didn’t help me do that. So that was the piece that was missing. And I will say that as a family, we had gone through my son’s law, my son’s cancer as a family. The four of us were together all the time, my daughter was 15 months old when her brother was diagnosed, and he spent much of the next two and a half years in the hospital. And when we were there, both of us, she was there. And a lot of families don’t do that, because they don’t want to, you know, expose their little kids to that. But the children’s hospital had such a good resource for the siblings. And I’m so grateful that we made that choice, because without that, my children wouldn’t have the chance to develop the relationship they that they did, and for her to have the time she did. And she grew up with an understanding of that of cancer and what it does, and life and death in her relationship with her brother that she never would have had if we had protected her from all of that. And so we went through it very well. But we did end up getting divorced soon after. And a lot of people jumped to the conclusion that we were you know that that’s what happens. And I, I don’t necessarily agree with that. And in our case, it was a matter of, well, it wasn’t because of what we had been through, we actually grieved together very well and mutually supported each other very well. And we still do to this day, but we did end up divorcing within a year after my son died. You know, I felt like I kind of had had the inner resources, I have a strong faith. And that was huge for me. And along the way in our son’s illness. I just got a lot of affirmation from my God, that he was in this and that he was upholding me and upholding our family. And so my focus very early on really became my daughter.
Victoria Volk 9:04
I had goosebumps when you shared about your daughter, being able to have the time to that relationship with her brother. I’m just I think back to my end of life doula certification training, where we talk about just positive impact that being with the dying has or the ill people, you know, people in hospice, what that does for the family members, if they can embrace that, and what it does for their healing.
Michele Benyo 9:33
One of the things I share with families that was what I took up early on, was the whole idea of making lemonade, and it’s not a new idea, but the way I look at it is you know, we got this lemon and Deanna got way more than her share of lemons at that at that tender age. And we can either bite the lemon and notice that it’s sour and hate that it’s sour. We can put it on the counter and say I’m not going to do deal with it and let it rot. Or we can slice it up and say, Okay, I’ve got this lemon, I’m going to add sugar, I’m going to add water, I’m going to stir it, I’m going to make the best lemonade I can. And that was the attitude that I had to have with her life because I was always looking at her life saying, This is not what I want for my daughter. And to this day, I still feel that way. You know, because I see all the years that she grew up through, without her brother, and we live next door to four siblings who are my children’s ages. So she’s grown up her whole life next door to four siblings without hers. And so that my message for parents, because this sounds, this probably sounds hopeless. And and it’s not, you know, it is I think the idea of the lemonade is this is what we have, and we don’t like it, but we’ll make the best of it. And then I think the important thing for families to know is that that sibling relationship really is important. What I did with Deanna was nurture her relationship with her brother continue the bonds, which is part of what families are so often told to let go of the child they lose, or the loved one that they lose, not to focus on that I had a woman tell me once that I focus too much on my son, and that probably upset my daughter, she didn’t have a clue, frankly, because nurturing, remembering my son and keeping him part of my daughter’s life as someone that had loved her and that she had loved and that she had this connection with was really one of the best things I could have done for her and is one of the best things that parents can do. So that’s something that parents struggle with. I know because they want to remember their child. And people tell them no, that’s not healthy. But on the contrary, it really is very healthy. And it’s a good way to allow their children to to maintain that relationship. One story I tell is when my daughter was going into first grade, I think, and she was going to a different school. And she said to me, mommy, how old would David be if he were alive now. And I told her and she said, Oh, good, then he’d be in school with me. And he wasn’t there. He wasn’t going to be there. But she took comfort in the fact of knowing that, that he would have been if he were alive. And that gave her comfort in some really odd way. Losing a child is so crushing and so devastating. And there’s no way we can ever replace that relationship. But there are ways that we can nurture it going forward. And that’s really part of my message for parents, thank you for sharing all of that. And one that that came to my mind as I was hearing you talk is this idea that that relationship does continue. And if we don’t allow children to give voice to that, we are shutting their them down their information down those those feelings that they those sensations are things that they feel with their loved one being there with them, like I feel them with me. But if they aren’t allowed to communicate that, or the parent gets upset when the child mentions the other child who’s who’s passed away, that really just keeps the child from grieving. Yes, yes. And research shows the the books that are out there now about early childhood are about sibling loss in childhood, really support the fact that the adults who have grown up bringing that sibling relationship forward, consider that to be such a good thing that it really has been a good thing for them. And we are afraid of grief. I mean, you’re doing this Victoria, you’re talking to people all the time about the ways that people in our lives don’t know how to support Grievers because we’re just as a society, so afraid of it. And it’s especially as true with children. And yet the best time to learn about grief and how to deal with grief and how to honor it is when you’re a child, because we all experience Well, it isn’t always the loss of a sibling or appearance. Sometimes it’s you know, moving or the death of a pet or divorce or something like that. But we all have those experiences in childhood. And those are the times for us to build our resilience skills and our coping skills and to understand that grief is part of loss of life that we will live with and that we can still live well with.
Victoria Volk 14:35
I love that last line and I love how you say living forward.
Michele Benyo 14:38
Mm hmm.
Victoria Volk 14:40
So what was your experience your personal experience as a child with grief?
Michele Benyo 14:45
Well, it’s interesting you asked that because I do have a story that I share. And part of what I also really feel is true about my being on this in this place that I’m in now is that it really did start in my childhood with the way that I was parented because I was quite a sensitive child who was called a crybaby, my feelings, my hurt feelings, my pains were were not things that the adults around me like when I talk to parents sometimes or adults ask them to think about when was the first time you experienced grief because I guarantee you it was way back in those early years. And the first instance that I remember was a time I grew up on Lake of the Woods in northern Minnesota where the lake is, you know, goes on, you can’t see the edge of it, it goes to the horizon, I was at the beach with a riding toy named Wally, the walrus of blow up walrus, and he got away from me and started to float away. And of course, I couldn’t get him. And some adults tried to get him and nobody could get him and I just had to helplessly watch him drift away. And to this day, I remember that feeling. And it’s something different than sadness, it’s that sense of loss of something that you’ll never get back. And that’s a very different feeling. And yes, he was just a riding toy. But I had to stand there and watch him float off into the sun, you know, into the horizon. And I felt so helpless. And of course, the adults around me, were trying to tell me all it’s just a riding toy, oh, we can get another one or Oh, go play without it. Or you know, all of those things that we kind of say to children when what they’re feeling is very real. Now, as an adult, I wouldn’t have that same feeling about Wally the walrus floating away. But then, you know, it was in my little life. It was quite a crisis. And that’s the first experience of grief that I just really vividly remember.
Victoria Volk 16:49
I love that story. Because, again, you make that distinction between our taught how to acquire things or people in our lives, but we’re never taught what to do. And we lose them.
Michele Benyo 17:00
Right.
Victoria Volk 17:00
Yeah, like we’re, you know, taught in Grief Recovery, right. But I’d like to kind of come back to child loss how your daughter throughout the years than how you helped her throughout the years and how she’s been shaped by this loss?
Michele Benyo 17:17
Yes, I had to do a lot of advocating for her and, uh, because I recognized that well, and I want to tell you one more thing about her as if the the word she told me at three and a half, because I really want people who are listening to your podcast to hear this. My daughter is, you know, precocious and articulate. But she’s not unique in what she feels. And the first night that my husband and my son were at the hospital the very first night when her brother was gone. And she was 15 months old. Then she wandered around the house, just wailing the sound she was making was terrifying to me. It was inhuman, and I could not comfort her, she I would go to her and she pushed me away and throw herself on the ground with every cell of her body. She was feeling that something was terribly wrong. Her dad and her brother were gone. And she knew from what had been going on around her that this was a bad thing. And so children really do feel this and they carry it forward. And I saw it in her in the friendships that she tried to make. She tried to find people to be hers friends, that would be her friend that she would be their friend that they would sort of be hers that wasn’t met very well by a lot of kids. Another piece of advice that that I would give parents and it was something I tried to do, that I believe would have made a huge difference for her is if you have a child who has had a loss, whether it’s especially I’d say if it’s a sibling, but any kind of loss like a parent, try to help them get connected with another child their age that has had the same experience. Because when they’re the only one going through this in their peer group, there’s so much about their responses to the world and to law, you know, to other relationships, like living next door to this family of four siblings, who had been friends with her brother as well as her and now had each other and she didn’t have anyone that was such a tremendous source of pain for her over the years. But if she could have had someone that understood what that feels like, I know that would have made a difference for her. So it is difficult. The flip side of that she is such a sensitive, She’s sensitive to other people’s feelings. She’s so smart and wise about other people’s pain and she is She has such uncanny ways of recognizing what people need and how to respond to that in really supportive ways and this is another thing that the that the research bears out is that a lot of times these kids grow up with these sensitivities. So she didn’t have necessarily the typical social skills. They had these other really amazing social sensibilities about what’s going on with people. So they are different children. She’s a different child. But you know, she is who she is. And she’s beautiful. And she was shaped by her losses, no doubt, and had a lot of challenges because of it.
Victoria Volk 20:32
I feel like you’re describing me in a low because I, I lost my dad when I was eight.
Michele Benyo 20:37
Okay.
Victoria Volk 20:38
But then I had some other things that happen in my life thereafter. But just like you, I was called The Cry Baby and couldn’t show my emotions, and I’m an empath. I know that now. Oh, my gosh, it took me like 30 plus years, 35 years to figure that out.
Michele Benyo 20:55
Yeah.
Victoria Volk 20:56
Sounds like your daughter is much, much the same. If she’s starting to step into those gifts, because it can feel like a curse.
Michele Benyo 21:05
She isn’t she’s not too long out of college, and is really feeling like she needs to not have obligations. I mean, she is working, but she’s not necessarily working in her career field, or in these areas where she really is so gifted, because she just kind of needs to be her and grow into herself now. And she’s really doing that and feeling much better about that. Because she’s out of the environments where there were there was so much comparison that she felt she didn’t always measure up to. So and I think what you bring up is, which is why another piece that I just think is important, and I don’t have any specific ways to do it. But if parents recognize, and I think one of the biggest things I did for Deanna was no matter what she was receiving outside, from me, she was receiving the understanding that I knew what was going on with her, and that I supported her and that she had these gifts, and that, you know, someday people would see these things in her but how tough it was to be surrounded by people who didn’t get her. So the one thing we can do as parents of children who have these experiences is just say, I understand that when you’re angry, you’re not being a bratty kid, necessarily, you know, there’s more going on here, and just advocate for them. So I hope she steps into it, I’m so glad that you are doing this and that you’re sharing your gifts, because it is so huge that you’re doing this and that you’re you know, shining a light on those things that you came to understand later in your life better, better late than never, you know,
Victoria Volk 22:50
Better late than never. And I think too as you know, the sooner I’m a mom, right to three kids, but it’s like I look at their younger years. And just think of how differently I would have parented them. Had I worked through a lot of the stuff that I’ve since worked through, oh, yeah, asked, yes, three years. And that’s the thing with addressing our own grief, as parents is the greatest, the greatest gift we can give our children is working on ourselves.
Michele Benyo 23:22
Yes, absolutely. That very first number one thing in my course, and in my working with parents is very first number one thing is you must take care of yourself. That’s not selfish. That is the best way to help your family. Because if you’re not taking care of your grief and taking care of your needs, you know you’re chilled. You are a role model for your children, first of all, and yes, absolutely. So what has your grief taught you? I mean, you’ve shared a lot. But is there anything that personally, your grief has taught you? It’s just It’s taught me that there are really heartbreaking things in life, but they are in life. They are part of life, nobody’s immune to it. And there are ways to just I mean, really make the lemonade. There are ways to just say, this doesn’t define me. I can live forward, walk forward, see my way forward through this. And it’s going to change everything, it changes everything. But it that doesn’t mean it’s bad. I of course I yearn for some of the things, you know, some of the care I would I yearn for a carefree childhood for my daughter that she never had. But this is good too. And so really, I think you’re part of your message and definitely a huge part of mine is that we we have it now. Just what grief has taught me is that there are gifts in it. Just like there are gifts in so many other things in life. Some of our greatest gifts come from the, from some of the hardest things and would I give up all the gifts to have my son back? Oh, you bet I would, I wouldn’t think twice. But yeah, grief has gifts in it. And that’s why my program is called Good grief parenting because grief is good. It is really how we heal. And people who refuse to face grief, or to deal with it are the ones who have the hardest time, not the people who who consent to and allow themselves to just feel the pain of it, because that is how we heal.
Victoria Volk 24:37
I want to bring up a point or a question. And then I have another point. I’m just gonna make a quick note here. So I circle back to it, you know, did people sometimes look at you and think you’re just Pollyanna, like, you’re just really pot like this is just to pot like you’re too positive about your greed? You know, because you had resources, and you had different trainings that other people didn’t consult, I can imagine that others would look at you and who are maybe grieving themselves at first, without really knowing you thinking, oh, yeah, that’s, that’s great. You know.
Michele Benyo 26:22
No, it was strong. It was strong. That’s the thing that people say. Because when people look at a family that’s lost a child, and you know, I’m sure and in other environments, if you’ve lost a spouse, it can be similar, no matter how you are, when people look at you, they’re they’re gonna see this, you know how awful that and devastating that is, because they can imagine and that’s, that’s why I champion the sibling too, because the parent child grief is so front and center for everybody that they don’t even think about the child. But what people would say to me was, you’re so strong. And I know a lot of us as Grievers, get that, that accolade, and it’s not that we’re strong, it’s like, what do you expect us to do be this heap on the on the ground, this puddle on the floor. And what people do when they say you’re strong, is they say, they think she doesn’t need any help, she doesn’t need support. So then you don’t I, you know, over the years, I felt like I just really didn’t get the support that I would have, would have loved to have had from other people who just wanted to come around me and be there for me, not that I needed any big specific thing from them. But for anyone listening, you know, really, please take that to heart that the Griever, who looks like they’re doing so well, still really needs for you to be able to say I’m missing that David isn’t here right now, if you’re the neighbor with all the kids or you know, whatever. So it that was really the piece that I experienced more. And I will say that I went back and was doing early childhood parent education again after my son died, and really got so much positive feedback from the parents in those classes, because I was able to talk with them about their children. And sometimes I’d tear up you know, we’re talking about little kids, my children’s ages and and I’d say this is just something I I do, don’t worry about me, I’m okay. But you know, and they just really felt like I was a good example for them. And so that was really heartwarming for me because I do feel like more people saw me as an example than a Pollyanna. I don’t remember anybody really looking at it that way.
Victoria Volk 28:52
You know, it’s like when people who are really in resistant to looking at their grass, you can look at people who have come on the other side of it, or who are working through it and have a positive attitude about it as being Pollyanna or like this, it’s great over here just come over here you know not that’s the heartbreaking thing for me is and maybe for you too and doing this work is that you see people just suffering.
Michele Benyo 29:21
Yes, that’s why I say it’s like Yeah 30 Suffering suffer and move your feet. Yes, you can do both and and move living forward doesn’t mean you don’t hurt anymore. I still to this day will have what I call my temper tantrum moments. I still have them. I’ll probably get off this podcast and sit there and say, Michelle, I don’t believe I sat there and just talked about this like it was nothing and I may cry for a while because I still I want my son back. I want my daughter to have her brothers still I still have my little temper tantrum moments, but we have a good life. We’re living forward, we can never have him. But I do hear what you’re saying. And I’m and I’m sensitive about it. Because the grief community kind of deals with it differently. There are there influencers out who really affirm those people who say, people try to tell you, it’s going to get better, it’s always going to hurt. I’m not saying that. I’m simply saying you can live forward. And that’s why I work with young families, because how heartbreaking if the parents can’t live forward, and they’ve got a three year old daughter who said, Who feels half of me is gone. And I have met, I have met some of those adults, I have met adults who were those three year old daughters who say, I wish you’d been there when my parents lost my sibling because they were absolutely crushed. And they never recovered. And that is heartbreaking to me, that doesn’t need to happen.
Victoria Volk 31:00
And for the child, it’s as if they’ve lost three people.
Michele Benyo 31:05
Yes. And they’ve lost their future too, because I’ll never be the same.
Victoria Volk 31:10
Yes, thank you for this conversation. Because I really feel like it’s an it’s part of loss, especially in young children that hasn’t been addressed on this podcast right yet. And I think it’s, I think it’s so important because I identify as a child Griever. And I understand what that feels like. Yeah, but I also and I was the youngest of four siblings, I was kind of an only child, my, my brother was 14, you know, when our father passed away, and so I was kind of left to my own devices. Really?
Michele Benyo 31:39
Did you get I mean, do you feel like any of you any of the children got much support out? Or not?
Victoria Volk 31:47
No, no. And again, it’s my mom had her own grief that she had, yeah, he was not dealing with it, she did not. She didn’t know how there was nobody, nobody, like when you were speaking about talking with, you know, pairing that child up with somebody else, there was nobody, right. Nobody knew what to do with me. And so they just didn’t do anything.
Michele Benyo 32:09
Exactly. And I live in a metropolitan area. And I still was not able to accomplish that for my daughter. And I will say that, you know, I’m doing what I’m doing because of my daughter. At the same time, I recognize that I do recognize that I had resources, and a mindset as an early childhood parent educator going into this that most parents don’t have. And so when I work with families, I start from the very beginning, I start with that self care, I start with those, I call them good grief beliefs, all that stuff, we learn in the Grief Recovery method about how we regard grief in ways that are not helpful. As adults, we need to learn that first so that we can look at what our children and our families really need. So even though My why is my daughter, what I’m doing now, really addresses what the parents need as well. And parents in those little towns like the one I grew up in, where there’s no grief sander, there aren’t a lot of you know, there aren’t probably grief therapists that are really trained in grief up there. I can be reached, you can be reached, those of us who are doing the online presence can be reached and be support for those families. Because it’s really a helpless place to be and we haven’t learned how to deal with it.
Victoria Volk 33:39
Yeah, and especially with COVID-19.
Michele Benyo 33:42
Yes.
Victoria Volk 33:42
They’re lost the families and everything have experienced on top of any other sibling loss that they’ve had or loss. As a parent, you lose a child and the child loses a sibling. What were some of the things that you saw? Now you you had the education and the tools but for a parent who may not how can they recognize if their child which we both know the child is going to be grieving, but I know for me personally, people probably thought I was doing okay, right. I wasn’t an outward I didn’t lash out. I wasn’t angry. You know, I didn’t I didn’t have outbursts. I was tardy a lot I had problems concentrating you know, these other things.
Michele Benyo 34:30
Yes.
Victoria Volk 34:30
Many people would probably say is ADHD or right you’re something like that, which is, in my personal opinion, sorely misdiagnosed for grief in a lot of cases. But what what are some of the things that you can points you can give to parents things to look for? Like?
Michele Benyo 34:50
I would just say that I want to say you say you wish you knew now what are knew then what you knew now when you started parenting your child and I feel the same way I have conversations with Deanna now and say, I wish I could go back and do this over again with you. Because I know so much more now. But one of the biggest things is yes, we don’t think we we don’t, they’re, they don’t show their grief in the same way. They show it a lot through play. If you pay attention, they’ll they’ll grieve, and then they’ll, and then they’ll just appear to be fine, because they can’t hold on to grief very long, it’s intense for them. And so kids don’t grieve continuously, they grieve in spurts. And a lot of times, they don’t look like they’re grieving, but you can be sure they are, because they, you know, they were aware of this person, they love this person, even if it was, you know, a really like a, even an infant sibling that they didn’t have there for a long time they know that presence is gone. So just as parents know, that whether they are telling you or not whether they appear or not, they are grieving. And you can initiate conversation in really simple ways. By acknowledging if they see you crying, you can say, Oh, I miss I miss your brother today, do you miss your brother sometimes, too, you know, just give them an offer. And they may or may not talk, and that’s okay. But you are telling them, it’s okay for them to talk about it. So the first thing I would say is don’t think about trying to protect the child from grief, because they’re they’re grieving, whether you see it or not. And the best thing you can do is invite conversation and open the door. You know, take care of yourself so that they can see, you know, Mommy is having a hard time right now. So I’m gonna just go, you know, sit, sit outside in the sun for a while, because I’m feeling really sad. And I need to take care of myself, and you can come out with me or, you know, let them know how you’re dealing with it in a positive way. Invite conversation. And the other thing, you know, that I as I mentioned earlier, is that idea of nurturing the relationship with their sibling, simply simply by speaking the person’s name by saying, oh, you know, if David were here, he’d love to play that game with you, or those kinds of things are normalizing. They’re not, you know, parents are afraid to bring it up. I mean, it’s just like my daughter saying, Oh, if her brother were here, good, he’d be in school with me. You know, they like the idea of the sibling, whether the siblings there or not. So just helping parents change that mindset. And so the conversation piece is huge. And they acknowledging their own grief. And the way that they’re taking care of it is huge. Honoring the child’s grief when they see it. This is that, you know, Grief Recovery method peace. And I include this in, in my little good grief guide that’s available on my website, some real specific ways to respond to children’s grief, instead of the, let’s get your mind off it response that we have so often. So those are some concrete things, any parent, if they just let go of their fear of saying the wrong thing, or making their child sad when they’re not sad? If you can just let go of that, and allow grief to be normal? Let your child know that you feel it. And yes, they feel it and it’s okay. That’s one of the hugest things you can do for your child is just not be afraid of that grief and just talk about it.
Victoria Volk 38:49
I love that. Now, does this change with age? Like how you respond anything? when? When is there? When is the line where they need more help? You know, what you’re seeing?
Michele Benyo 39:03
Well, this is this is my caveat, I guess, is that I’m an early childhood parent educator. And so my focus is on the early years and all of this formative stuff. And a lot of people who know that I do this work will say Oh, my friends, you know, teenager died and their 12 year old is suffering. And I don’t feel nearly as well equipped to deal with that, because I know it’s different number one, and because some of the things that are so helpful have have already gotten in place in that, you know, maybe the family doesn’t talk about tough things. So then it’s hard to suddenly start doing it. But I would say that with those with older children to opening the door, not allowing grief to be an elephant in the room. And sometimes the kid the the children will, you know, maybe not appear to be receptive, they won’t want to talk and if they don’t want to talk, don’t force it. But just make it always available. You have social workers in schools, people that you can talk to, if you feel there’s something going on. Just know too, that when you see kids who have experienced a loss, doing behaviors that you know, that are not typical for them anything that’s not typical for them, they’re not eating the same, they’re not doing the same activities. They’re not suddenly they’re not good in school anymore. Sometimes a child can start being a people pleaser, because they don’t want to upset the adults around them that are dealing with grief. So you know, anytime a child’s behavior kind of shifts in a way, where you’re not sure what it’s about, and they’ve experienced a loss, you know, it’s time maybe to take a look at that. And, and one of the first things I did also with my daughter, I did find her child counselor, therapist, even before her brother died, because I knew he was going to die, so that she just had someone to go and do play therapy with for those early years of her life. So yes, just giving them opportunities. And being mindful of something that’s that’s uncharacteristic would be my farangs. In the information that you filled out for us recording, there was one part that you said you that you’ve experienced miracles, and I’m curious, what miracles Oh, well, my faith is is such a huge part. And I experienced miracles in along David’s journey and some things that were better than, you know, the original diagnosis appeared to be one thing, and then it was like, we got a reprieve. And that wasn’t it at all. And we sort of got this reprieve, and I really felt that was miraculous. But it was more about some of the things that I personally got. And they’re, they’re not real short stories, but I’ll try to make them short. One was that before my son was ever diagnosed, I was in a Michaels store. It was He was God, his cancer. We found it in December. And there was this yarn Angel. And for some reason I wanted to buy it. I don’t typically buy stuff like that it was just this yarn Angel. And it was called the angel of peace. And when I went to buy it, I just thought, Oh, I wish it was the angel of joy, because that’s what Christmas is to me. A few days later, my son was diagnosed with cancer, and I was just really so aware that that angel of peace had been had been given to me for a purpose. You know, the fact that I saw you know, the fact that I even cared what it was called, was just really a message to me. The other thing that is truly a bona fide nobody can argue with it miracle is so when my in the midst of my son’s cancer, there was a weekend in the fall where my husband took our two children to visit his brother in another town, so I could have the weekend to myself. And one of the things I always do in the fall is make apple Chris and I had this family recipe that was the best no comparison, Apple Chris. But I had lost that recipe years ago. I knew I had it in the house we lived in but I had somehow misplaced it hadn’t been able to make it for a number of years. But every fall I would still rifle through everything in my kitchen and look for this recipe and I never found it. So this weekend when he was gone with the kids, I started to rifle through the kitchen again. And I stopped and I stood in the middle of the kitchen and I said God, you know where this recipe is and if I don’t find it, I’m going to go crazy. And I said that and I stepped aside and I bent down like this and I looked under the edge of the cabinet on the wall and from the back of the cabinet between the cabinet and the wall. There was a little corner piece of paper sticking down and I pulled it out with my thumbnail and it was my recipe card. No one I have that recipe card in an in a plastic bag now because it’s got God’s fingerprint on it. That is that’s a bonafide miracle.
Victoria Volk 44:31
I got goosebumps in that story too.
Michele Benyo 44:34
And I also heard my son talking when he his cancer came back. I heard him talking one night his has his dad and I both heard it on the intercom. And my son was saying, I don’t want to die. I don’t want to die. And then he said, All right, I’ll come and so I knew you know, I know and that was a miracle. And that was a gift to because I knew. And when we talked to him in the morning, we kind of said, oh, you know, did you talk to anybody? You know, he didn’t remember it. But that night or that a couple days later, when we were in the hospital, he was talking about Jesus. And he was saying things we had not told him. So, yes, there were miracles, there were miracles.
Victoria Volk 45:33
Thank you for sharing that. And I think it speaks to the importance of our faith. Yeah, go through things like this. And, and just really understanding that just because our loved one passes, you know, and I don’t know, there’s all different kinds of listeners with all different systems and things. But I personally believe, which I didn’t always, because when my dad passed away, like for many, many years, probably the next 20 years, I thought when you die, you go on the ground, and that was it. Like there was no afterlife, there was no continuation of the, you know, the spirit. I’ve been woken up in a lot of different ways to them, but and especially with my end of life, doula certification training, it’s really helped me open my mind even more.
Michele Benyo 46:25
Yes, I can imagine.
Victoria Volk 46:27
And so I’m curious, was that always for you? This? You know, this belief?
Michele Benyo 46:32
Yes. Yes, it really was. From the time I was a young girl. And, and I do credit. I mean, like you that I recognize that, that not everyone shares the same beliefs, and so much of what I offer, you know, I just, I want parents to hear it and take value from it, no matter where they are in their own hearts with their beliefs. But as for me, I know that my relationship with God and Jesus and my being able to count on him, I mean, when people say, I’m strong, I say, that’s what it is. I’m just assured. And, and I do look back at my life, I, you know, I told you that I feel like this journey and this mission of helping parents understand, you know, this, the deep part of what children need from them to affirm these emotions that are really difficult, like grief, a started for me as a child, and because I didn’t feel like my parents were that way. And yet, I always had that relationship, and my sisters didn’t. So you know, I can see that difference and know what a difference it’s made for me. And that’s another piece that I’m so grateful for, because I always say, Why me? Why do I have this relationship when others in my family don’t? And I’m not sure why. But I have always had it. Yeah,
Victoria Volk 47:59
Well, and even for the relationship to continue after your son passed, right? If we have that take comfort in that knowing that we can still talk to them exactly. can still feel their presence, if we really just sit in, maybe ask Mm hmm. Being open to asking for that.
Michele Benyo 48:20
Yeah.
Victoria Volk 48:21
Message or whatever it is, or you know, that feeling that can bring us great comfort. I know you mentioned to there was an author and Roiphe? Roiphe.
Michele Benyo 48:32
I, you know, I’ve only ever seen her name in print. So I say Roiphe, I’m not sure if that’s how she pronounces it.
Victoria Volk 48:39
Before. She says there’s Yes, grief loss and the remaking of a life. Yes, love that.
Michele Benyo 48:44
I do, too. When I when I came across that early in my knowing that, you know, I wanted to help with families with this, I thought that’s how I make the distinction is, there are so many people that are there to help us deal with loss, and thankfully, so the grief groups of therapists, all of those, what I want to do is step in, you know, behind that or concurrently with that and say, yes, now we need to remake life, we still have life, but it’s not the same, it can ever be the same, but we can remake it and we can choose how to remake it. And yeah, I love that quote. It’s just very simple. A very simple but clear way of looking at loss and grief.
Victoria Volk 49:26
So what would you like to scream to the world and wish that people knew and understood about sibling loss about your grief? I mean, you’ve shared a lot of great wisdom, but is there anything else that you can think of?
Michele Benyo 49:43
The two things that I would scream, you know, the two things that are so well three things that are so important to me the first one is that we need to talk about grief and normalize it and not be afraid of it and support people in the midst of it. I mean, we just really need to be able to talk about it. And the other piece is for people to really understand that siblings hurt any sibling, any sibling that you talk to whether they lost their sibling when they were 50, or whether they lost them when they were five, you know, they, they will tell you the same thing that people really didn’t seem to, you know, take into account their grief. And it is, it is so identity shifting for every sibling to lose a sibling. And so that is something that if someone said you can just give one message to the world, Michelle, it would be know that siblings grieve and help them grieve and help them through it. I know I said, there were three things. I don’t remember what the third one was that popped into my head. But yeah, those are the two things really.
Victoria Volk 50:50
Do you see a lot more people coming to for support on when their child loses an only sibling, like when they only have just the one sibling that Pat like, like, if there’s just the two children and one passes away? Or do you know, because I think there can be this comfort as a parent that you would take, if one child passes and there’s two others, you know, have another they still have another sibling to support and, you know, walk through life with but I think it’s important to not take away though that the individual relationships are still individual.
Michele Benyo 51:25
Exactly. And and you’re right. And I thought about that a lot. Because of course i I’m doing what I’m doing. You know, I founded this on my one experience with my one daughter. And that’s not at all universal, you know, every child is going to experience it in their own way. I think the idea that the sibling bond is strong for all siblings, I think that’s universal, but it’s not going to be as painful for every sibling. And it’s not going to look the same way for every sibling. I have worked mostly with families that have, you know, just the single remaining sibling. And I yeah, I look forward to looking working more with families who have more children, because it is you may have one child who’s really really suffering, and one child who is adjusting better to so yes, you bring up such an important point. And it, it’s a good point to make any way which is not all kids are the same. Not all children are like my daughter. So I use my examples. But your child is totally different. And I recognize that. And if you’ve got more than one child, you’re not going to have a one size fits all way of helping those children through their grief because they’re going to do it differently.
Victoria Volk 52:40
Well not even just thought of when there’s multiples, you know, yeah, twin and your twin passes, but yet you have other siblings, and yet that was your twin. Yeah, yeah, or triplet, or whatever the case may be, or, or you lost one of your siblings at birth, as well. And there’s so many there are those right? Like there are, throughout your grief experience, what has given you the most joy and what gives you the most hope for the future.
Michele Benyo 53:10
You know, the most joy really has been, as I’ve started to do this work, and I’ve had parents for whom it’s made such a difference. That is, that is the greatest joy for me to know that someone is seeing, you know, the name of my my course that I offer is see your way forward after child loss. And that that is really what I want to help them do. And for a parent to come in and say I just didn’t know how to be a parent, I just didn’t know how I could do it. And just, you know, just six months later have a totally different view of seeing their way forward. And I do I use the word living forward because I don’t want to say moving forward, that’s not the right connotation. It’s we’re going to live and we’re going to go forward when we’re living forward. And we choose how to do that. And that gives me the greatest joy is just knowing that, that what I have offered has has worked has been a key for some other parents because as I said, you know, I knew I was working from my own experience. And if there’s anything we know in grief, you know this because you’ve talked to so many people, it’s, it’s different for everybody. I can’t tell you what I did and say now go out and do that and you’ll be happy. That’s not at all what I what I try to do or want to do or believe that I can do and so when what I offer does help someone make their own way. That’s the greatest joy. And what was the other question you asked?
Victoria Volk 54:47
Hope for the future, your hope for the future?
Michele Benyo 54:50
Well, that’s the same thing that gives me hope because the other piece as we know, those of us who have worked with the Grief Recovery method that is that whole mindset around grief that needs to shift. And if I can teach parents how to do emotion coaching and things that build really good coping skills and resilience in their young children, and help their children grow up with healthy attitudes about how to deal with grief when it comes, because it’s going to come again, then those children are going to grow up and be adults who know how to do it with their own children. And that that is hope. So I look at it as you know, it’s not just the families that I’m helping, it’s the legacy that they’re going to build that’s going to be carried on by their children. And that’s really, that’s really hopeful. And it’s intervention. Mm, yeah. I love that. It’s the ripples of the work that yeah, yes, exactly. Is there anything else you would like to share? No, I know that I’ve gone far and wide, it’s not hard to talk with you about these things, there’s just so much to say, and I just, I just really want to invite people anywhere to visit my website, www dot Good grief parenting.com. And I’m putting on there, I have a community page where I’m trying to just provide places for people to tap into what can serve them, you know, the things that I do the course that I offer, the coaching that I offer, and make them aware of the podcasts that I’m on, because there are so I’m just discovering, as things have changed so much in the 20 years that I’ve been on this journey, I just really encourage people to look for the resources that are out there and find the ones that speak to you and serve you, and read and be open to absorbing some different ways of looking at grief and recognizing that it really can be good. It’s not something to avoid, and protect our children from because it’s just a part of life. And, and it can be an in, it can be an enriching part of life, or a debilitating one it can choose, we choose Yes, and that is the whole point. And I like to, you know, encourage people. But yes, and and not choosing to live forward is a choice, as well a choice to stay stuck in a place that doesn’t feel good. So that’s why I just really do encourage anyone listening to your podcast to, you know, you’ve got so many examples of stories, and there’s so many good resources out there and be open, be open and you don’t have to let go of your loved one healing does not mean you leave your loved one behind. And that’s something I know a lot of parents struggle with. They don’t want to quit hurting over their child because then they’re forgetting their child and they don’t want to do that. And that’s that’s really not true. We can live forward with them.
Victoria Volk 58:05
I love that. And you mentioned your course, which is your way forward after child lost its weight program.
Michele Benyo 58:11
And all of that information is on my on my website.
Victoria Volk 58:16
And I will have the link to that in the show notes as well as where people can find you on social which is yes.
Michele Benyo 58:22
I prefer Instagram. I’m at Michelle banjo underscore Good grief. It’s Michelle Banya with one L, M I C H, E L E, B, E, N, Y.O. And there are two of us on Instagram. So I’m the one with underscore Good grief.
Victoria Volk 58:42
All right. Thank you for sharing that. And thank you for being my guest today is been my honor to have you and for sharing your story of cumulative loss, which is never have I had an interview with someone who has not had cumulative loss.
Michele Benyo 58:58
Yes, exactly. We don’t realize it until we start looking at it. Yes. So thank you Victoria for the opportunity. I’ve just really enjoyed talking with you and really enjoyed looking at your podcast as well. So thank you.
Victoria Volk 59:13
Thank you for listening. 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, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Bob Ginsberg | A Quest for Truth
SHOW NOTES SUMMARY:
What is truth?
For many of us, it is what we’ve been told to believe to be true, without any real evidence or science to back up that truth.
After the sudden, tragic death of his daughter, Bob found his open-minded skeptical heart looking for evidence that his daughter’s consciousness still existed in some form after her passing.
He was having experiences that, years before, he may have dismissed. And yet, in his grief, found himself finding comfort in that which many others often raise an eyebrow at and dismiss.
In his quest for the truth of what happens to consciousness after death, he and his late wife, Phran, founded The Forever Foundation, a not-for-profit organization that shares the truth of consciousness after death that is backed by science and research. All the while, bringing comfort to the thousands of members in their (FREE) community and retreat participants.
Listen to Bob share his perspective of what grief has taught him and how, knowing what he knows, still doesn’t make the grief any easier some days since losing his wife in 2020. Bob also discusses the changes he’s endured after living alone for the first time as an adult since his wife’s passing.
RESOURCES:
CONNECT:
Victoria Volk 00:56
Thank you for tuning in to grieving voices today. My guest is Bob Ginsberg. He started researching the evidence for survival of consciousness soon after his daughter died in 2002, devastated by the loss he needed science to tell him if she still existed in some form. In 2004, Bob and his wife Fran founded Forever Family Foundation, a global not for profit that educates the public about evidence that we are more than our physical bodies. Bob hosts the signs of life radio show his past editor of signs of Life magazine, heads the foundation’s medium evaluation certification program, and writes a blog at beyondthefivesenses.com and is also the author of the medium explosion. Bob, Fran and the foundation are currently featured in the Netflix Docu series surviving death. Sadly, Fran passed away to the spirit realm, September 22, 2020. Thank you so much for being here, Bob.
Bob Ginsberg 01:59
It’s my pleasure to be with you today.
Victoria Volk 02:02
You are actually a referral guest for me with our mutual friend Sirry Bernsen, who is a medium certified by the Forever Family Foundation. And she’s also a grief recovery specialist. So that’s exciting to have connected with her. And I absolutely love the Netflix Docu series surviving death. And in fact, I’ve also had Dr. Chris Kerr as a guest on my podcast from that Docu series as well. So, I loved it. So, thank you so much for being for your time today and for being my guest and sharing your story.
Bob Ginsberg 02:40
Yeah, well, it’s my pleasure, obviously, I have a common bond with you and most of your listeners. So, we’re all in the same world in both together.
Victoria Volk 02:50
So, before we started recording, you had mentioned that where you’re at now is far different from where you grew up in what you knew. And so, you’re living in Florida now and retirement community and you are originally from Brooklyn, New York, which is quite the difference, you’re kind of sharing with me earlier can. And there’s grief in that too, right? This leaving what you knew, and in fact, you had mentioned that you are living alone for the first time, especially since the passing of your wife, so let’s start there.
Bob Ginsberg 03:27
Well, you know, my story is not unlike a lot of people. I mean, I grew up in New York, Brooklyn, New York and after I got married and moved out to a suburb, you know, Long Island but I was living a very materialistic, you know, life I had, you know, three kids and the big house and the big mortgage and the cars and the toys. And, you know, I viewed you know, the, the main goal in life was to, you know, to make money and get caught up in that trap. And of course, we all know that life can change in an instant. And it did, you know, fast forward. And I spent many years after my daughter passed and some pretty deep throes of grief, as many can relate to, I really didn’t find any meaning and purpose and, you know, in life, I just wanted to go away. For me, I was kind of obsessed, you might call it with finding out if it was possible that my daughter still survived in some form. You know, logic told me that that was just fantasy and that wasn’t, you know, possible. However, what was put before me told another story. I mean, I you know, without getting too much involved, you know, when the morning of the accident in which my daughter and son were involved in, my wife friend woke up at three o’clock in the morning and she sat up In bed, she was waiting. She was trembling, and she was beside herself. And I said, What’s the matter? And she said, something horrible is gonna happen today. And I said, what does that mean? You know, what can you tell me more, you know, and she said, I can only tell you that it’s going to be utterly devastating, something that you know, today. And so, I did what most parents would do when I checked on, you know, my three children throughout the day, my, my middle daughter was already at college, she just started her college career, my son, we had the SUV all packed up the next morning, I was taking him back to his college in my youngest, Bailey, she was working one last day, in a part time job before returning to high school the next day. And, you know, at the end of the day, everything was fine, I let my guard down, it faded from my awareness, we were all out to dinner, we have two cars, Fran, and I wanted to stop for some essentials, and my son and daughter left in another car, and then coming home, we came upon an accident. And then worst fears were realized when, when they were involved in an accident, my daughter didn’t survive the injuries, my son was seriously injured and airlifted to a hospital with with with brain injuries. And then eventually, when it became clear that my son was going to recover, I started to think like, how is that possible? I had a friend No, because she knew what I was, you know, she was trembling, you know, and, and that led me what I needed was the science end of it, I started traveling all over the country and meeting with medical doctors and scientists that studied consciousness, you know, trying to figure it out. I fought the notion, you know, I was so caught up in my grief that I, I just, I kept having these extraordinary experiences, and all this knowledge put before me, and I refuse to accept it. Until, you know, one day I relented under the weight of all the evidence, and that enabled me to find some meaning and purpose in my life. And you know, of course, that grew and mushrooms and all that. Now, recently, as you mentioned, you know, my wife passed in September. And that put me to the, to the test, you know, once it’s been, you know, my daughter passed in 2002, you know, my, my wife just passed. And its sort of half and half, I have to reinforce everything that I that I thought that I knew, and because we’re human, and despite what you know, grief takes over and all over again. As you mentioned, I you know, in dealing with the grief, it was a little bit unusual, because I realized that I’ve never lived alone in my whole life. You know, I lived with my parents until I went to college. In college, I had roommates all the time, I got married pretty much right after college, you know, and then we live together, live together with my wife for 46 years. And you know, then now, you know, so I said, wow, that’s here I am, you know, living alone, something that many, many people do, but it was foreign to me. So, I was dealing with a complete overhaul, you know, in lifestyle, in addition to, you know, all the feelings and all the emotion. I think that, for me, and for many others, the knowledge that our loved ones still survive in some form is in fact, a form of grief therapy. You know, I mean, to me, there was nothing else than anybody could possibly say, that would give me any hope and comfort, but the knowledge that, you know, my daughter and my wife, you know, still exist, enable me to to keep going not to suggest that it’s magic pill, you know, for grief. I mean, that notion is absurd. But I think that such a belief allows you to when you reach those, those deep chasms of despair, you know, it allows you to dig out. So wait a second, I’ve experienced these signs and communications, I know about all this stuff, I’ve read all the research, that can’t be all by coincidence, you know, that, you know, you reaches a point where, you know, we start with some vague hope, and that becomes some belief and then ultimately, some inner knowing, you know, and that inner knowing, I think, is a very valuable piece of the puzzle, you know, in recovering, you know, from grief. So, that’s a long-winded answer to to a short question that you asked, but that you know that that’s sort of where I am today.
Victoria Volk 09:33
That’s an incredible story and thank you for sharing and I’m so sorry for the loss of your daughter and know your your wife and I can’t help but think too, I can’t imagine what that belief system if we pass that on to our children, what that might do for their grief to you know, this understanding if they like for me personally. When my dad passed away when I was eight, I didn’t have this there wasn’t the communication In about faith or religion or that spirituality more so, yeah, that that’s possible that I could have talked to my dad or, you know, I saw him be put in the ground. And I thought, well, that’s what happens when you die. And there’s nothing else like, that’s what happens. And then I was angry at God to write because I was still little, and I was still going to Sunday school and Jesus loves you. Well, Jesus, who loves you, why would he do this? Why would he take my dad, you know, and so there, there was a lot of missed opportunity for people to communicate that with me, and what a difference I think that could have made and Mike reef, that it would have been okay to have that communication, even if he wasn’t there. And I’m really curious to what were you doing in your life at the time that you kind of dropped whatever you were doing, and just looked for research and experts and things like that? And also too, I have another question on top of that was your wife on board with you on that?
Bob Ginsberg 11:09
Well, she was more than on board. She, she, you know, she was my lifeline because she had all of these intuitive experiences and this deeper spiritual knowledge, not religious knowledge, but spiritual knowledge. And I was sort of living vicariously through her because one thing that I knew in all of our many, many years together, she never ever lied to me not once. So, I trusted everything implicitly, of what she told me. And so I was, I was elated when she would have all these experiences. I mean, I crave to have them too, and I wasn’t getting them. But she did. And that helped me get through. When we formed the foundation. I’m in sort of a mixture between science and spirituality, I was the science, and she was the spirituality and what we found as many people will found even many of today’s physicist is that they’re not as as different as they might appear. You know, the physicists are sounding more like spiritualist, you know, today, because of finding out things that the ancients once knew, and we’re rediscovering. But to answer your question, yeah, these things have never crossed my mind. I mean, I was, I had I was in the corporate world, I was, I had an insurance agency for many, many years. You know, everything, you know, when you’re stripped down, you have a loss, like losing a child, you’re stripped down to nothingness, not and material things, lost all of its appeal, and I couldn’t care less you know about it, I was fortunate that I had some people and employees that picked up the ball. And, you know, I just told him, I’m not available, you know, I don’t care what happens, do the best he can, you know, so I gave that up pretty much as you know, I can try to at least call in and keep a hand in some things. But I did just what I said, I just just kept reading was my, my, I SafePlace. And it just kept reading books and reading books and reading books. And then I would get on planes. And I literally would go and set up meetings with scientists and I participant participated in research. And that was helpful to me, you know, because I was saying, well, you know, you can question yourself, Am I get crazy that this really happened and my just deluding myself is that a product of my grave. But here I had all these people that from Harvard and Yale, and you know, with medical degrees, and you know, substantial people that had bodies of research, mostly unknown to the public, but yet, you know, they existed. So that, that helped me a lot. You know, when I talk to people now, I’ll readily admit that, you know, now we have this foundation that you mentioned, and we have, you know, well over 11,000 members, you know, across the world, and we’ve been fortunate to help a lot of, of the bereaved, but I didn’t get into it. For any altruistic reason to help others, I was just looking for a way to survive myself, you know, and that was my motivation. That morphed over the years and then I found that the only thing that gave me any comfort or any hope or any pleasure was being able to, to help others but it certainly wasn’t like most people, as you can relate in most of your listeners. I was just finding a way to in you know, for me to navigate the rest of my life, not necessarily to you know, to help others. But as as you found and as many people find, is that you know, very often trauma loss is a trigger to exploration and you reevaluate everything you know, when your wife and suddenly you know, helping other people or seeing other people get some relief. is a is a therapy is a therapy for yourself. Yeah. And so so that’s pretty much it. It’s been our lives both of our life since 2004, you know, when we started the foundation? And was it always amazes me that the thirst I could I relate it to something that you just said is that before we started the foundation friend, and I would go to a support group made up of parents who was children. And we walked in there, you know, we were mortified, because exactly what you just said, there were people that were religious all their lives, and the stuff we heard coming out of their mouths, you know, blank God, you know, I was taught that if I did this than I did that night, that this, I would be taken care of, you know, and it was false promises, and there was so angry, you know, and that struck me, you know, we are under the, you know, false illusions and pretenses when it comes to, you know, promises, you know, and rules and dogma control and so forth. But, so, I always, I always kept that in mind. I mean, I think that, at its core, you know, religion and spirituality are, are the same, they come out of compassion and love, except that spirituality doesn’t have any of the rules attached to it, you know, it’s more of a coming from within. I know that, you know, organized religion, many times they, the leaders of organized religion came out of ages of mysticism where communing with your ancestors was a given. And it was understood and all these things that the religion now forbids, you know, it’s okay for them to do you know, but not for us, you know, I have a problem with that, you know, I think we’re all meant to, to be connected, you know, to the, to the greater whole. So, so for me, that portion of it was very, very important. I know that traditional brief therapy, and many mental health professionals will counsel their patients to separate from the wise and separate from their loved one, they’ll prescribe medications, you know, and so forth to help with that. I like the other approach, where embrace it, continue a relationship with your loved one, it’s not the same kind of relationship, obviously, we can’t touch them, and we can’t hug them. And we can’t kiss them although and dream visitation, sometimes we can. But, you know, you mentioned you know, losing your parents at the age of eight, my grandson who’s seven now, you know, he was six and friend got sick, he spent six months with us, because we did home hospice, you know, and he was involved, and he would try to do healing. And, you know, and, you know, now we explained to him that, you know, that, that my wife is now still is around, but she’s just in the invisible world, you know, she’s still there, we just can’t always see her. And she, he accepts that. And he finds that, you know, comforting and he’s, you know, obviously, with the work that that I do, I mean, he’s, he’s exposed to all this kind of stuff, and it doesn’t find anything unnatural about it, he hasn’t been taught these things, and that can’t be real. And he makes no judgment. He just takes things at face value for what they are. And I think that if we, as you touched upon this, if we can educate our, our children, if they all of a sudden describe having this dream, you know, where grandma appeared, or having or even described, having a hearing go voice or a conversation, instead of rushing them out to a psychologist, talk about it, you know, get their feelings stolen. There’s nothing wrong with that, how lucky they are, you know, and maybe we would all be better for it.
Victoria Volk 18:52
Oh, absolutely. Agree. I absolutely agree. Can you describe some of those experience that you personally had?
Bob Ginsberg 18:59
Well, you know, I, for me, I’ll preface it by saying that, you know, if you don’t believe these things are possible. You’re not going to recognize any any things that happen. You have to be Altru, you know, for me, was the science part of it that opened me up to get, you know, direct personal experiences. But after my daughter passed, I was very fortunate in the fact that I had probably over the course of the five to six years I had 75 dream visitations from her, and I journaled each and every one and I and I would define a dream visitation as being separate from a so-called ordinary dream. Ordinary dreams tend to be disjointed and fragmented and kind of all over the place and might appear to make much sense in a visitation dream. And the theory behind that is that our loved ones in spirit are these entities of energy and, and they find a conduit to get through to us when our monkey mind, so to speak, is at rest during the REM stage. And during these dream visitations, I mean, I could hug my daughter and I could talk to her. And I could tell her how much I loved her, and I could smell her and all this stuff. And that, that kept me going. And I knew enough to write each one down. Because every time I felt really horrible, I pick up my journal and read all of these, you know, and they were, you know, brought me back to life, so to speak. But we had, you know, incredible experiences on what I found. After my daughter passed, my, my wife, friend, and my other daughter went on the computer in her room, and they found all of these writings and essays and poetry that she had written. We never knew about and most of it had to do with what happens after we die. Which raises the question of, you know, what, do certain children have an inner knowing that their lives may be cut short, her best friend, my daughter’s best friend told us that when they were both 12 years old, my daughter made her friend enter into a pact with her. And the pact was if one of them that were to die before the other, they would leave a sign for the other ones, that the other one would know that they still existed, you know, how many 12 year olds make a pact like that, you know, she wrote poetry short, this beautiful poem called The Wonder awaits talking about what happens, you know, after we die, and that how she was going to come back and let us know, which, by the way, after reading all those things, we felt compelled to start the foundation. But, you know, there is some evidence that something that some of us, you know, have this knowing, somehow, you know, that, that things will, you know, we won’t have a long time, you know, on this earth, by the way, in that incident that I just mentioned, the path that you made with a friend. After my daughter’s funeral, I didn’t even know this friend never told me about this to later on. But my daughter’s best friend came over our house and told Fran about the pact and then and Bailey’s. My daughter Bailey’s pact was that she was going to take a Blue Magic Marker Pen, and she was going to put it in unusual place. And when my daughter’s best friend returned to her home, she walked into her room and then neatly placed on her computer keyboard was a was a Blue Magic Marker. And she said that she didn’t know anyone. And she certainly had not been using one like for years. And so, she had no idea how it was there. And then she went around to all the other members of the household and asked if anybody had been in a room and everybody said no, of course. Did I dismiss this? Yes. You know, I mean, Fran didn’t but i did i just okay, that’s that’s an amazing coincidence. What a coincidence. But these things just started happening and happening and happening and happening. You know, I don’t know, I don’t really have, I don’t imagine we have time for me to get into some, but some of them, I would write down every experience. And I even sought out the help of a statistician that shows you how sick left minded I was to calculate the odds of each one of these things occurring. And when I reached 20, experiences that had odds against chance of a million to one each, then I relented because I had the evidence. This has to be true; you can’t have 20 million to one shot, you know, you can no longer explain them away. And so, we’ve had experiences like that. Right now. There’s such a thing called Electronic Voice Phenomena, something that you know, 99% of people have never heard of, but what happens is that people this has been going on for decades. But you know, people take recording devices back in the day they were these reel-to-reel things and now they’re digital recorders on their phones. And they sent an attention to talk to their loved one and they turn on the recorder 20 seconds. And then they turn off the recorder and then they play it back. Sometimes not often. Sometimes people experiment with it for months or even years before they start getting voices. But sometimes you get the the imprint of voices onto the recorder. We have a friend of ours was a close friend of France and she’s been experimenting with Electronic Voice Phenomena for many, many years. So we have to Fran pass, she would set up seven she’d write down seven or eight questions that she wanted to ask Fran and in spirit to answer and then Janet would send me the recordings back when there was something appeared. And one of them she said Fran, what is the name of the organization that you found it and then on a tape you hear from Forever Family Foundation. So these things are really interesting because this tangible evidence does a recording, you know, and if you can rule out fraud, or other external factors, it’s pretty compelling. You know, we don’t know how it’s possible, but yet to find a way to make this imprint, so there are things, you know, people learn about end of life experiences, you know, and having deathbed visions, you know, near death experiences, you know, reincarnation evidence mediumship, you mentioned, you know, having surgery on there, there are certain people, you know, in my book that you mentioned, the meaning of explosion, like, kind of went out on a whim. And I said that, based upon my experience all these years, that 85 to 90% of the mediums that are practicing today can’t do what they claim, you know, which ruffled a few feathers, but I, you know, my data, and my observations are that it’s true, not all of them are fraudulent, some of them are, but many are just have some degree of intuitive ability, which we all do to various degrees, and, and, you know, they, somebody tells them all, you should go out and be a medium next thing, you know, they’re charging a lot of money in the sitting with very fragile people that are in horrible grief. And that bothers me. So, you know, that’s why we test these these mediums, and that’s why, you know, I put that stuff down on the book, but these are ways in which people can keep in touch, you know, with their loved ones, we try to counsel people to try to do these guarantees altered states of conscious consciousness through meditation, or whatever music or art or whatever nature, you know, and try to fluster, you know, direct, you know, communication, you know, I once did a survey amongst, you know, a membership, and I asked, if you had the choice, would you rather receive a communication from your deceased loved one directly, or through a medium. And I fully expected the overwhelming majority to say directly, but it was the opposite. Most people said, through a medium, which I thought was odd. And then I started probing, and then I realized why because people always question the, you know, the voices or the information that they get, you know, they imagining it, whereas, if they’re going through a third party, a professional, so to speak, then they could trust the information. There are also people that are fearful of, of nonphysical things, you know, because they’re taught that way, you know, either through the media or their family or their religion, or so forth. And so there’s a fear factor involved with things that can’t be explained. So, they would rather get it from from somebody else. So that, you know, that surprised me.
Victoria Volk 27:57
Well, look at your own example, your life example, right? You set out on a mission to prove to yourself that this was possible. Right?
Bob Ginsberg 28:08
Right.
Victoria Volk 28:09
I’m surprised you didn’t know the answer to that, because of your own experience.
Bob Ginsberg 28:13
Yeah. And and, you know, we find all the time is that my experience is that people who believe in an afterlife, or people believe that we’ve called survival of consciousness, appear to do better in their grief than those who don’t. There are many people that I’ve noticed over the years, and I don’t have to tell you, because you well versed in this, but you know, they become defined by their grief. And the notion to that to these people, if you suggest that their loved one still survives, in some form, they interpret that as an affront is an insult to their, like, a diminishes the depth of their grief. And I understand it, and there are people that and we don’t try to convince anybody, we just tell people what we know, and what we’ve learned, and people make their own choices, you know, we hold these grief retreats, and one of which was was featured in that Netflix documentary that you mentioned, and we just had we just finished up one, two weeks ago, you know, in July, in Connecticut, and we see it time and time again, there are people that leave on Sunday night in with much more clarity and hope and comfort than when they arrived. You know, there are people that arrive in such throes of grief that they can’t even smile, I can’t laugh, they can’t do anything. And there’s a lightness, you know, to it at the end. And we attribute that to, you know, to the the the knowledge that they gained and the question is though does it doesn’t last, you know, and so we try to keep in touch and follow up and see because now you’re you’re on this high. It’s like Gone For a medium reading, you’re on this immediate high, you know, you’re, it’s wonderful. And then you go back in the real world, so to speak, and talk to your friends and your colleagues and family, and they kind of poopoo it, you know, you know, I hate when they say, but, but if it makes you feel better, you know, so I think that this is a real, some of the business, there’s been some clinical research, you know, that shows that belief in survival consciousness has a positive effect on one’s greed. Brief, it’s backed up, you know, by science. And, you know, we, we really believe that that’s why we continue in that work.
Victoria Volk 30:41
I would love to include in the show notes, a resource that you have, that people can go to and read for themselves, if you’re willing to share after, after we record.
Bob Ginsberg 30:51
Yeah, also, I mentioned on our website, you know, Forever Family foundation.org, we listed by category, all the better books on the subject that we bring people, you know, grief and loss, and, you know, science and mediumship, and so forth. So there’s a complete resource on there that people can refer to, you know, there’s a medical doctor that we are associated with, he’s on our board, his name is Dr. Pol, Calvary, Paris, SETI. And it’s interesting, he’s a Italian born, and he’s lived in Scotland for the past 20 years. So he’s a purebred Italian and speaks with a Scottish accent. I’m always fascinated to talk to him. But he, he wrote this book, which is based on cognitive behavior therapy, and called Love knows no grief. And love knows no death, I’m forgetting already, my, I’m getting old. But in any event, it’s on our website, and it’s a workbook. So, he he also to go along with the material produced 26 different videos that go, we have to read the chapter, you watch the video. And his theory is that if you change the way that you think about death, you can make real progress, you know, in the way that you navigate your physical lives. And, and that’s been very helpful to a lot of people. And that book, a link to that book is also on our website.
Victoria Volk 32:20
And I absolutely agree with that, because it also shifts your perspective and changes your feelings about your grief. Right? Yeah, I absolutely 100% agree with that. So, what has your grief taught you? I mean, aside from this deeper connection that you’ve developed, based on scientific research first, and then just your personal experiences, what else has grief taught you?
Bob Ginsberg 32:48
Some more things, probably obvious that many people can relate to. It taught me the elusive nature of life, and that to take nothing for granted, you know, just absolutely nothing. I mean, I don’t I don’t plan for the future anymore. I mean, obviously, you know, running a foundation, I have to do certain planning, and you know, but I’m retired from my, my regular work, and I just, I take things as they come, I try to step back, and, you know, just experience instead of interpret and reason, try to engage in rational thinking, I think, sometimes that holds us back, you know, it’s, I use the example. I mean, you watch somebody in the street, or on Facebook, and constantly have some sort of experience, and that can’t, they can’t take pictures fast enough, they have to document that, you know, I don’t see the need for that I may see something glorious, you know, but I will just enjoy the experience, you know, and I don’t feel the need to document it, you know, you know, for somebody else.
Victoria Volk 33:56
That’s me. Yeah. You just called me out without doing
Bob Ginsberg 34:01
well, you know, seeing but you know, between the dots, you know, listen, when you’ve lost somebody close, you want to find some meaning and purpose, because it doesn’t make sense. Otherwise, what’s the purpose of life? We live in a, in a chaotic, chaotic world? You know, what’s, what’s the point? You know, I mean, if we are extinguished forever, and two generations later, nobody even knows that we existed. I mean, why? Why? What’s the purpose? I have my own theory on that. I mean, I think that we do live in a world that’s random, or at least it appears random. I mean, I don’t agree with a lot of spiritual thinkers that say that. Nothing. Everything happens for a reason, you know, and there are no coincidences. I don’t believe that. I believe that. Sure. There are coincidences, you know, there are many synchronicities that aren’t coincidences. They just appear to be but you know, things happen all the time freewill, you know, I decided to do this a step out here, whatever and get hit by a truck, things are going to happen, you know, I’m able now to think that this physical life is just a little tiny blip of a continuum of life. I’m not fearful, you know, of death, sometimes I even welcome it, you know, but I, because I realized that, once again, as a, as a great shaman, or once read a book from a shaman, he says, you know, physical life is like being at a football game. If you’re sitting, you know, the 70,000 people in the stadium, and if you’re sitting at ground level, in the first row, you could hear all the grunts and, and the sounds and, and see all the chaos and the violence and so forth, and disorganization, you know, but when you move up to the very, very top row, all the way at the top of the stadium, you see all the patterns and all the organization, you know, and there’s the meaning behind all the all the different plays. And I thought that always stuck with me, because, you know, I think that after we transition and lose our physical bodies, and with this entity of pure consciousness, we see all the all of the, the the patterns that appeared to us as being random, you know, and then they make sense, but we can’t make sense of it while we’re here, you know, and then after somebody dies, we have no choice, but what are our choices, we have to continue on, figure out a new way to reinvent ourselves, figure out a new way to navigate this new life that was thrust upon us that life that we never wanted or imagined. And, and go on from there. I mean, that’s, you know, there’s no choice. So, I mean, I try to now look at things and find some, some reasons, and I try to experience more, I try to do things, I don’t do things that I don’t feel like doing, I only do things that I that I enjoy. I, I took up golf, again, you know, for I hadn’t played in 20 years, I go out and play golf. To me, that’s meditation. I’m the only guy in the club that plays alone. That’s the way I want it. I, you know, I just, you know, I can talk to myself, I could talk to my loved ones while playing I enjoy all the the nature and to me, that’s my meditation, we all need to find some sort of, of an outlet to clear our heads, you know, and to get closer to what we’re meant to be. And maybe our purpose in life, people always asking the deep questions, what’s the purpose of life, maybe the purpose of life is just to recognize that there’s more beyond you know, that this is this is one step life can be very cruel, it could be there’s a lot of suffering that goes on, there’s nobody that’s making us suffer, it just shit happens, you know, and, and that will move to the next phase eventually, and, and we’ll go from there and move closer to so called enlightenment. I don’t particularly like that term but gain more clarity and always have no more experiences.
Victoria Volk 38:19
I like that analogy with the football stadium. Because I think in grief itself, if we can be more of an observer, and just kind of look at our lives and our patterns of how our grief has shown up throughout the different phases of our lives, because it’s not always just in all these interviews and conversations I’ve had with Grievers. It’s never just one loss. Even if it’s not the death of a loved one, there’s been things that have happened or occurred in people’s lives that they don’t think is grief necessarily at the time. But in hindsight, if you can be the observer, you’ll see the patterns kind of repeating and how you responded to the grief and how you’re continuing to respond to it. So, I love that analogy. So in talking about the loss of your wife now, because you said you’re living alone for the very first time, and and I’m also curious how well let’s go back to your daughter passing because I’m curious with the surviving children, was that what you were going through and experiencing and trying to, you know, with the research and all of that, were the children involved in that process, too. And, and how do you think that has served them in their grief?
Bob Ginsberg 39:33
Yeah, I, my, my daughter, my middle daughter, she is totally on board with all this stuff. And you know, and she was very helpful to both Fran and myself and still remains, you know, so so she’s, you know, very much into the work that we do. My son was, it’s hard to gauge you know, he has no memory of the X He was driving the car. And you know, and I think it’s sort of a blessing that he doesn’t remember anything. But he is also supportive. You know, he’s, he wants to believe he’s on board, he never says anything negative about, you know, any of the work that we do, you know, he can, he’ll help in any way. So, I think it’s helpful to them as it is to, you know, to, to most people to, you know, this work and, you know, and, and I, you know, I share with them things that happen, you know, and they share with me, interestingly enough, my, my son tells me, I mean, he’s 38 Now, but he tells me that he never had a dream. And of course, I know, he must dream, but he never remembers a trade. With design. I never met anybody that never remembered any dream, you know, but so he was he sort of detached in that sense, you know, and he’s a quiet, shy guy, but he, I think he find some comfort, I also think that they want to support me, you know, so they, you know, so part of it is to, is to help me out, but I always remain aware of, they suffered a loss just the way I did, you know, they lost their sister, and they lost their mom, so I can’t put myself in their shoes, they have totally different emotions that we haven’t, you know, when we run these grief retreats, we, sometimes we go into breakouts, because we know that, I mean, grief is grief, but everybody experiences it in a different way. And people that have lost a child may have certain sets of things that they deal with, unlike people that have lost a parent, unlike people that have lost, you know, a sibling, and, you know, some people who was by suicide, so we try to have these discussion groups just so people could share their feelings and how, you know, maybe they’re not as unique as you think, you know, they’re common to the group. But it’s so true, even in the work that you do with Grief Recovery. I mean, you’re well aware of that. I mean, grief is not the same for everybody. Right?
Victoria Volk 42:11
Right. And there’s no hierarchy of grief. You know, everyone experiences it at 100% There’s no half Grievers, you know, out in the world.
Bob Ginsberg 42:21
That’s true, and never thought of it that way. It’s like being half pregnant, right?
Victoria Volk 42:25
Yeah. Right. So what gives you hope for the future and you know, now now kind of navigating life alone? Like how was how how do you keep your spirits up and not let yourself slip into that? Because you know, what, you know, it’s hard to unknow what you know, and what you know, is and you had shared this is that you welcome death sometimes, for obvious reasons, you know, but how do you keep yourself from not slipping too far down that slope?
Bob Ginsberg 43:06
Well, I you know, for me, I find that keeping busy I do better when I’m busy than when I’m not you know, because when I’m busy I’m not thinking about it constantly, you know, whereas you know, I was never and even when I’m not busy during the day obviously with the foundation of you know, there’s tons of work that I could do and I i do it until I don’t feel like doing it anymore and then I stopped you know and then you know and then when I feel like it again I’ll do it again I don’t feel pressure to just you know everything you know can wait you know my wife was never like that. Oddly enough she was 24/7 constantly one of my big challenges was trying to get her to you know to take to take a break I do that now. I was never a huge TV watcher simply because we were always working but now I binge watch these shows you know on Netflix and Amazon all these things like kind of like through path tonight and I’m not much of a sleeper That to me is helpful because while I’m watching all these interesting you know series not thinking about how sad I am you know and that to me is helpful so when I want to when I find in how do I I still listen it’s a common It bothers me somewhat you know because after doing the having the foundation for so many years and you know people knowing my story and blah blah blah and I get comments while you must be doing you know great because you know that you know friends still exist and you must be getting signs like crazy and I’m still human I you know, I’m like just like everybody else you know, I I dig myself out from for me, going over in my mind, my experiences and what I know you No. And maybe it’ll take me picking up a book I haven’t read in, you know, in 15 years, or just to reinforce, or I have enough tools in my bag to try to get myself on the right track again, I’m still gonna fall off the track, I fall off the track every day, I’m able to get myself back on, but that’s the key. You know, there are people that are not as fortunate and they’re off the track and forever, you know, and they can’t get back on. So having these other outlets and these other opportunities and these other resources to guide you, I think are important. So that’s pretty much what my life is now. And I probably work harder now than I ever did before. You know, before I used to goof off a lot, but now it’s therapeutic. So I just, you know, keep keep doing the work.
Victoria Volk 45:49
There’s two words that you said that I’m going to share with you. Have you read the Grief Recovery handbook?
Bob Ginsberg 45:56
I have? I have not no.
Victoria Volk 45:59
Okay. You’re an avid reader, from what I gather. Yeah, I would encourage you to read that book, The Grief Recovery handbook. But there’s two words that you shared that I want to highlight. Because I think it’s important for listeners to hear and so that you said you you keep busy. And that happens to be one of the myths of grief. Because that’s what we do, right when we in. So, the question ask yourself really is, Am I doing this to avoid what I’m feeling at this time. Because if it is, then that’s not addressing or looking at your feelings and in in what’s going on emotionally. And maybe there’s something emotionally incomplete there. And that’s where you do have the knowledge of, well, you can still communicate with with your wife, and you can still communicate with your daughter. But I just wanted to bring that up. Because I think it’s so important that it is really easy to get caught up in the rat race of life and trying to distract ourselves. When we are having a tough time or a bad day or, or whatever. At recently, I found myself doing that too. I got a lot done. But I recognize knowing what I know, because I can’t unknow what I know. Right? I have an awareness now. Oh, that’s me keeping busy. Yeah, that’s me trying to avoid, you know. And so, it’s then addressing Well, there’s my clue, there’s my sign that I have something I need to, to address there. And so, I just I encourage you to read that book, it might bring to light something for you, that would be helpful.
Bob Ginsberg 47:40
Yeah, I can relate to that. I mean, I mean, I think subconsciously, I know that when I’m engaged in all these things, like even the binge watching, you know, TV, that it’s, it’s an attempt to avoid the pain, you know, rather than to embrace it, you know, temporary fix.
Victoria Volk 48:04
And you also bring up another good point, and that sometimes helpers need help too. Not that, just because we know what we know, doesn’t mean with like you said, we’re not that we’re not human, we’re still human and still have those same challenges that other people have. True? Yeah. So what gives you the most hope for the future? And what gives you joy today?
Bob Ginsberg 48:30
Well, you know, we we end every radio show with the same slogan, you know, and that is, you know, your loved ones are only a heartbeat away in science is going to prove it. I’m kind of rethinking that whole thing. Because the more and more that I learn, I’m starting to realize that we’re not going to change worldview about death, I don’t think by the science, although it’s possible, but it’s by people sharing their experiences. And and I think we live in a society now where people have this profound kind of experiences and after death communications, and they’re very reluctant, reluctant to share them with their friends or their family or their colleagues, colleagues for fear of being judged or ridiculed and labeled. And so, it’s my hope that and what we try to do is just to, I’m not talking about you don’t have to go run into the office and make an announcement and lecture people, I mean, just have enough, be brave enough just to share it with people whether or not you know, their beliefs. And when more and more and more people share. It’ll become more mainstream people will be more open to the ideas and maybe maybe will grieve less, you know, you know, as a whole. So, I mean, I, I hope to see a time where we all you know, share a lot more I hope, but like everybody else, even though I do work to receive more communications because they that they, they’re always reinforcing, you know, you know, like when they happen. And, you know, most of all, I just want to continue to engage, you know, with others and tell them what I have learned and share experiences and promote this general feeling that we’re more than our physical bodies, you know, we think of ourselves as a brain, a brain is who we are, when the brain goes, What could possibly survive, you know, you’re buried in the ground or cremated. But if we think that the, this is just a shell, and that our true self, you know, can continues after we shed the shell, you know, I think we’ll all be a lot better off and then we’ll be able to live our lives with some more meaning and purpose. So, for me, that it’s a constant search for meaning and purpose, you know, because the randomness gets to me every once in a while and have to step back and try and figure out why we’re here and realize that you know, where we’re going and the broader picture than this finite little chunk in history.
Victoria Volk 51:13
Yeah. And the surviving death series really sparked something in me. And you know, that’s when I had Dr. Chris Kerr Quran and had Siri on. And I actually ended up doing an end of life doula certification, out this prompt, you know, I had been doing home health care work in the past, but it was kind of this thing I was kind of, like shutting down within myself, you know, like I, because I feel like I’ve deep compassion to sit with people at their last days of their life, because I was a CNA to and high school certified nursing assistant in a nursing home, you know, and so it’s like, I’ve been doing this work for a long time, but it just didn’t. I kind of like shut was shutting myself off from that. And I think I missed out on probably a lot of experiences that could have helped me, maybe spiritually evolve. Earlier in my life, had I embraced that ability or that gift of empathy. I had a point here was I going with it?
Bob Ginsberg 52:22
I think that’s very commendable, what you’re doing, I mean, and we can learn, I mean, knowing what now what, you know, if you sit with somebody that’s in the dying process, you can understand and appreciate some of the things that are going on, you know, and take them to, you know, the pure experience for what it is, people, it’s my belief that every single person as they’re passing, and, you know, it could be hours or a week before they pass, get visitations or escorts, you know, to the other side, and they may not be able to communicate it because of them mental or physical state, but nonetheless, they have these and that’s wonderfully uplifting, you know, to think that we all have somebody to help us, you know, make, you know, I’ll tell you just a quick, it’s kind of a humorous story. When my mother was was my mother passed a couple years ago, and we were all sitting with her, and she was in the recliner. And we had a semi circle of chairs in front of her and all of a sudden, she was looking at an empty chair directly in front of her and she screamed out, you know, mama, mama, and I knew she was seeing her mother. And, of course, everybody else in the room, you know, they didn’t know they thought she was hallucinating. But Fran, and I know. And then my father walked out from the other room, and he saw the empty chair. So, he went over, and he sat in the empty chair, my mother is sick as she was started yelling, Get up, you know, get up, he had no idea. He sat on his mother-in-law. My poor dad, you know, he’s like, what? But but, you know, see, that’s something that I ordinarily, I would, you know, you just would attribute to somebody a dying brain and hallucinations, but it’s not there, you know, hundreds and 1000s of reports of this going on. But nobody talks about it. Your guest, you know, Christopher, Kurt talked about it because he sees it every day, you know, in hospice. And that’s even how, as he probably told you, that’s how the medical personnel knows when somebody is about to cross over. So, I think would be comforting if people knew about you know, these things, and most people don’t.
Victoria Volk 54:35
Or just be open to the possibility, right? There’s hope in that. I was thinking back as you said, your slogan for your radio show, and I was thinking back to an interview. Actually, it just went live not that long ago, and her experience was, you know, she had her boyfriend at the time had been in a terrible car accident and pardon me. It was her husband when her husband passed away. You know, she said she had young child At the time, and she said, You know, I hear your heartbeat, but you’re already gone, you know, he was considered brain dead. And I think back to that conversation, and I’m thinking, Gosh, I don’t know what her belief system is, but just in that instance alone, to feel like, they’re gone, but they’re not really, you know, if you can believe that, you can still have this continuation of a relationship and in Grief Recovery, that’s what we say, it’s, it’s a continuation of the relationship, it continues on whether you like it or not, it’s because you, you, you’re emotionally invested in that person that, you know, whether it was a less than loving relationship, or it was really loving, right, that, that there is a continuation of that relationship, because people have an impact that they sometimes don’t even realize until just the impact of your daughter, right, the ripples of her sharing with her best friend and the poetry now, and that was your prompt to start the foundation, like the impact of her life? You know, and I guess we she doesn’t get to see it the way you do. But but she probably does. Right, in the spirit realm.
Bob Ginsberg 56:15
Yeah, you know, I, I used to bristle when people said, well, you know, that, you know, her, her death had had meaning because, look, look what it spawned, you know, because now, you know, you’ve built this whole thing I used to, you know, not really buy into that. But as the years went by, maybe that was part of the of the plan, you know, who am I to say that it wasn’t? I mean, I’m, I’m a totally different person than I was 20 years ago, you know, so.
Victoria Volk 56:44
Longer it changes us? Absolutely. But it’s the impact of her life. Is there anything else you would like to share?
Bob Ginsberg 56:53
No, I just, you know, I appreciate the work that you do. And, you know, in Grief Recovery, I think that we all need, we all need a way, you know, we need a way to dig out, you know, from where we are, you know, and this, there’s a lot of help. And there are a lot of resources. And I appreciate everybody in the field that approach it from all different perspectives, some perspectives I agree with, and some might don’t, but nonetheless, different things are helpful to different people.
Victoria Volk 57:25
So, Fran was very much your co creator of the foundation, what do you think if she were on here with you? What do you think she would want to share with Grievers?
Bob Ginsberg 57:35
I think that there would be nothing extraordinary, she just, you know, would encourage people to be open, you know, there’s nothing wrong with being an open-minded skeptic, you know, it’s a problem when you’re a closed minded skeptic, and you just dismiss everything. You know, I mean, there was a scientist at once said, I wouldn’t believe in this stuff, even if it was true, you know. So, I mean, you know, it’s a form of scientism, you know, and just experience, don’t judge and remain open. And, you know, that’s what, that’s all you could do. I think that before you dismiss the stories that you hear, and these books that you read, do your own personal research and do your own investigations and talk to as many people as you can. Because there, there is light on the other side, you know, what, we’re filled with this darkness, it’s almost complete darkness after we lose somebody and then gradually, light starts to seep in a little bit at a time, you know, and then you, you finally reach a point, well, hey, I, you know, I went, I went an hour without thinking of my loved one. And then all you know, I went a day, you know, and then before you know it, you know, maybe it went a few days. And, you know, it’s a gradual lightness and that only comes from this, this inner knowing based upon what you’ve learned their experience, I think she would encourage everybody to keep at it and just dismiss those who are closed and just pay attention to what you know, is true.
Victoria Volk 59:10
When, as you describe what, how she would probably express herself and what she’d want to say I thought of this analogy, I heard it recently to, I can’t remember where but, you know, when we go walk into a dark room, we don’t look for the for the we look for the light switch right? To turn on the light to bring in light to fill the room with light. We are never looking for a dark switch. Right? You know, so even on your darkest of days, it’s looking for the light switch. And I feel like that’s kind of Yeah, it is what you are on board with that. Would you like to share anything else about Fran?
Bob Ginsberg 59:50
No, I mean, she you know, I mean, I you know, I call myself co founder of the foundation, but she was the you know, the true you know, founder she she dragged me along for the ride you know, of course, now I wish I would have paid more attention, which kept saying things like, you need to learn this, you know, now and now I realize why I have to learn, you know everything about the inner workings but you know, to be done, I think that she was not i She was not afraid to die, you know, she wasn’t happy about it, but she was not afraid. Only because she felt there was so much more work to be done. But, you know, near the end, she I mean, she did suffer terribly. And she but she, she did have an experience, like we were talking about where she, her, her deceased aunt, who was she was very close with and helped raise her. She was having regular conversations with, you know, with her near the end. So, I think that she believed they know, she believed that she was destined for this work. I mean, this foundation work became her life, and there was nothing that was gonna stand in our way. And she, you know, she was driven to get the message out, she was driven to further research. It was driven to help the bereaved. And so, she left a mark. And I said, when the hospice nurse came near the end, and one day, and the nurse said, you have any questions? And I said, Yeah, trying to be joking, a little bit. So you know, what’s the meaning of life? You know, of course, that through or, you know, and she just looked into said, well, you know, shouldn’t if I was serious, and actually, that’s a very difficult question. And Fran, you know, as sick as she was, she just said, it’s not difficult at all, you know, the meaning of life is to leave this world a better place. And that was it. And that’s the way she lives in life.
Victoria Volk 1:01:46
I just, yeah, I’m getting emotional. I’m not sure why. That just really touched me so much. That I didn’t expect that. Yeah, that’s a beautiful message to end on today.
Bob Ginsberg 1:02:05
Its been a pleasure.
Victoria Volk 1:02:07
Yeah, thank you so much. It’s been my honor to have you as a guest and for you to share your story and about the foundation and the work that you’ve done and created for to help the bereaved. Where can people find you?
Bob Ginsberg 1:02:22
Well, the, the Foundation website is three words forever. Familyfoundation.org, just the way it sounds. I write a personal blog at beyondthefive senses.com. Put my thoughts down, and the book is called the medium explosion. Anybody interested in that? And that’s pretty much it. Anybody wants to email I’m always open my email is [email protected].
Victoria Volk 1:02:53
And are you on social media?
Bob Ginsberg 1:02:56
Yeah, I mean, I checked Facebook, I don’t do a lot with a bit on, you know, Facebook and LinkedIn and those kinds of things. But I’m a little bit of a dinosaur. So, I don’t always keep up with that.
Victoria Volk 1:03:06
Okay. Well, I will link to your website and all of those resources.
Bob Ginsberg 1:03:11
Yeah. If people want to become a member, it’s free of charge for adults.
Victoria Volk 1:03:15
Oh, amazing. Do you have a Facebook group then for your foundation?
Bob Ginsberg 1:03:20
There is. We have a person that handles that for us, but they can find it for Family Foundation page.
Victoria Volk 1:03:28
All right. Well, thank you so much again.
Bob Ginsberg 1:03:32
You’re welcome.
Victoria Volk 1:03:33
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, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Suicide |
Eric Hodgdon | Opening the Door To a Parent’s Worst Nightmare
SHOW SUMMARY:
It was a great day; nothing seemed off with his daughter Zoi. They enjoyed a meal together; she headed to her room while he went downstairs to do some computer work.
Sometime later, before heading to bed, he went to say goodnight to his beloved daughter, Zoi. The music she loved blaring from her stereo; he opened the door only to see an empty bed.
What he discovered next changed his life forever – changed him forever.
No parent should ever have to experience the death of a child. And, it feels like one of the cruelest experiences a heart could ever possibly endure.
Listen to Eric’s story of how he went from struggle to strength. He describes a defining moment that set him on a path of empowering and leading himself through his devastating and life-shattering loss.
RESOURCES:
CONNECT:
Victoria Volk 00:00
Thank you for tuning in to grieving voices. Today my guest is Eric hodgdon. He is a best selling Amazon author TEDx speaker and coach after losing his 15 year old daughter Zoe to suicide in early 2014. He fought for his family and Zoe’s friends to find their pathway to better days, he found a way to get back up and walk his grief journey. Now he is sharing the lessons he learned so that no one else has to walk alone on their journey. Eric has trained 1000s of people who want to go from struggle to strength in the face of their worst setbacks. Thank you so much for being here.
Eric Hodgdon 00:38
Thank you so much, Victoria. I’m deeply honored to be here with you.
Victoria Volk 00:42
And this is a very important topic, we’re talking about suicide, and teens. And before we started to record I shared that I had looked up some stats for my own state of North Dakota, I would like to open with that. And then kind of, if you want to piggyback off of that in what it’s like where you live. So in the state of North Dakota, one person every 60 hours dies by suicide. Wow. In my State, it is the first leading cause of death for ages 10 to 24. In my State, and the North Dakota teen suicide rate is three times higher than the national average. Wow, North Dakota has the second highest rate and suicide from 2000 to 2018. And we’re just behind New Hampshire, New Hampshire is number one. And where do you live? Eric?
Eric Hodgdon 01:43
I live now in Tampa, Florida. But I grew up in New England. I grew up in Maine, very close to New Hampshire, of course. And while those numbers are staggering and shocking, in some cases, it doesn’t surprise me with how the struggle is being dealt with in folks lives, especially teens.
Victoria Volk 02:11
And in rural more rural areas, or major areas that aren’t as progressive or cities that aren’t as progressive and maybe states that aren’t as progressive when it comes to mental health.
Eric Hodgdon 02:23
Correct. And where are the resources for them? Where are the resources to help them figure out that there are options out there that don’t include taking their life as that only option to remove the pain that they’re in, or the struggle that they’re dealing with that they don’t believe is the there’s a way out of and so finding and getting access to the resources that help them is missing? I think a lot of cases and I don’t think that that’s why you and I are here, I think you and I are here to provide a different optic on on those resources and where to find them and how to get them and how to how to show that there are there are setbacks in life that we will always face. But there are tools to help you to get from that struggle to the strength that you need to make it to the next and sometimes the next hour.
Victoria Volk 03:22
So share, if you wouldn’t mind share the start of your grieving story.
Eric Hodgdon 03:29
Thank you. So seven years ago, I was fighting for custody of my 15 year old daughter Zoey. It was a reluctant decision that I made to follow that process but it was to protect and to ultimately care for Zoe’s well being at a very formative ages and and so Zoey was trying to handle things as best possible. She’d been hospitalized four times in adolescent units. And each time I did see a progression in her strength. I saw her capacity to help others and to be available to them when they were struggling and ultimately, in the beginning of 2014. Zoey went quiet. And one Saturday I picked her up and I brought her back to my house she was able to come home and stays with me on weekends. Which were awesome honestly, because we would go to a mug and muffin restaurant in our town for breakfast maybe or we would go to the beach and we would collect rocks in the middle of winter and just freeze our hands or sometimes though it would be up in her room, playing music listening to her music or playing the ukulele and but I brought her back to my house for this one particular weekend and she was upstairs Burning some Jasmine incense and applying this really cool henna tattoo on her hand. And I went up and asked her if she wanted to hang out with some friends. And she told me that she didn’t have any and I, I pushed back a little bit on that with her and she, I said, Well, do you want to make something to eat instead and just hang out? She said, Yeah, let’s do that. So afterwards we’re cleaning up and she’s told me that she was tired and she wanted to go to bed and say, I love you pumpkins. And she said, I love you too dead. I went back to my computer to do some work. And a little while later, I went upstairs to say goodnight to Zoe and eyes opened her bedroom door. I could hear her stereo playing Jonathan Ashanti’s music very low. She had a string of Christmas lights that were lit around the perimeter of her room. But she wasn’t in her bed. out of the corner of my eye, and in a dim light, I could see that. So he was standing in her closet and I was so sure she was going to jump out and scare me. I said Zoey, what are you doing? But she didn’t answer me. Because she wasn’t standing in her closet. I called 911. And what I thought was going to be a nother hospitalization. After we got home from the ER that night, turned into awake Five days later, we’re over 900 people came to honor my family and Zoey. And I think when I experienced that loss, I wasn’t sure that I was going to survive it. I remember driving home from the hospital that night with my sister in utter disbelief, and they had my hand gripped on the seat belt. And I told her I don’t think I’m gonna, I don’t know anything, I’m gonna survive this. And she looked at me and just said, I’ve got your back. I don’t know what to do. But you’re, you know what, we’ll find a way to make it happen. And so obviously getting through that next week until we laid Zoey to rest was challenging. Just a ton of emotions. But I think something incredible happened in that week is that all of her friends started to come over to the house and they were staying at the house with me. And Zoey was there in energy, it was really a strange feeling. Her physical body wasn’t with us, but her energy was there and and that really helped. I think a lot of us understand what survival was going to mean for us, especially May. And so in the weeks and months after we lost Zoey, I found myself sitting in my couch in my living room, everybody had gone back to their lives. Because typically a couple weeks after you lose somebody, you feel like you’re kind of at a crossroads. What do I do with this because everybody has gone back to their lives and you’re left to walk this new path that you didn’t choose to be on. It feels very lonely, it feels like you have no direction, or no energy to even get in a bed some days or you’re going through boxes of tissues. And you don’t want to be but you What’s the other what’s the other choice. And so I feel like now, having the resources for kids having the resources for adults is going to be so important because I think there are resources out there right now are focused on survival being the end game. It’s a handoff point. And I believe that there are other ways to encourage others to empower folks to lead themselves first, so that they can get back up. And and not only survive, but as you would say Victoria to thrive after their loss. And I think it’s so very important. It’s much needed.
Victoria Volk 09:10
My eyes welled up, I’m my heart. I’m a parent, I have a my son’s gonna be 16, my 14 year old and a 12 year old and I cannot imagine the it’s like your heart is ripped out I imagine.
Eric Hodgdon 09:31
It is. It is and if I can share something really personal with you is that I remember being at the wake and I was not upset during the week because I was ultimately convinced that Zoey and I were going to be able to communicate like you and I were going to communicate. I was just waiting for that message that that voice and it didn’t come and I figured that I would use what everybody else told Me would heal all my wounds Time, time would heal my wounds. That didn’t work. You know, how’s that working for me? I’d be asking myself, how’s that going right now. And it probably it wasn’t until about 18 months later that I was in such a state of self sabotage for beating myself up is probably a better way of putting it. Where I was just, I was stuck in a pattern. And I did hear Zoe’s voice one day, and it scared me in a very unique way, I was in a pattern where I would get off the commuter rail train in my town, it’s a two mile drive to my house. And inevitably, by mile one, I would start to cry. And that’s when I would start the little beat up process the self beat up process and I’m so sorry Zoey, I should have been a better dad for you, you should be here. And it was a pattern. And when I pulled into my driveway, I pulled myself together and went in the house for the night. And then the next day of do the same thing and over and over again, but it built up to one day where I left work and the second I left work that’s when the the self sabotage started. The the the head chatter, if you will, and I just let it go when it cascade and by the time I got off the train and got in my car, second, I shut the door, I was sobbing, I was crying so hard, that my windows fogged up. And now I was screaming at myself. Not giving myself any permission to figure out what was going on. But rather expending energy, valuable energy, healing energy on beating myself up and I, I screamed in my car. I’m so sorry, Zoey. And it was as if she was sitting in the seat next to me, Victoria. And I heard her say, Dad cut it out. Geez, I’m okay. I froze. And I didn’t make another sound until I pulled into my driveway. And I sat there for what felt like probably an hour and probably 10 minutes, but so was right. What am I doing? She’s okay. I did everything I possibly could for her while she was here. I did the best that I could with what I had. And that wasn’t serving anybody, her friends, my family, even myself in terms of healing, if I was yelling at myself, and putting myself down and beating myself up over something that I didn’t have any control over. But what I did have control over Victoria. And I think I’m going on here. What I did have control over was how I approached getting back up and surviving this because the alternative was just more of that self sabotage?
Victoria Volk 13:07
Can you speak to that? What actually what was the so that sounds like it was a defining moment in your healing?
Eric Hodgdon 13:14
Absolutely. Yeah, you know, as interesting. As the month started to tick by, I don’t know about you. But I remember every Saturday night at a certain time, I would watch the clock. And I would watch the clock at the time that they called 911 would watch the clock, it was like I was going through it every week at the same time. But once I had this defining moment in the car, I started to look at things a little differently. That so he would be really upset with me if I was wasting all of the good memories from her life by not living mine. And I could still honor her and carry on at the same time, because it’s okay to do that. And I released anything internally that was telling me otherwise. And I’ve never been more grateful for so we’re talking to me that day. With that message now I’m sure it was in my head. But nonetheless, I feel like it was a very powerful message that I needed to hear at that moment. And so I started to look at Okay, now I have to accept that I did everything that I could. I have to forgive not only Zoey for taking her life, but myself. Especially then I think it was the moment that I started to really focus on the gratitude of what is in my life now that I found some opening if you will, on my path, some light started to start. The path started to be illuminated with some hope that way. A minute, there is something beyond this, this yuckiness of survival. That is just not going to get me anywhere. But there’s a light that I can actually start to work walk towards. And I know eventually I’ll get to it. So does that. Does that help?
Victoria Volk 15:18
No, thank you for sharing. And I would ask you, well, first just tell us about Zoe, who she was,
Eric Hodgdon 15:25
you guys, your audience can see this, I just got a big smile on my face when you said that this, Zoey isn’t Oh, I feel like she’s an old soul. She was always so eclectic in her thinking in her activities. In her humor, even in with her music that she wrote, and she would sing for us on her ukulele. It was just, she just had this way about her that was all about connection. And after in the days and weeks after, so he died, I started to receive many handwritten letters from her hospital friends, and each one of them told me that it was Zoey that helped them when they first went to the hospital, because she just knew that it was their first time. And she would go up to them and she would hug them. And she’d be like, Hey, guys, I’m Zoey. Look, there’s nothing to be afraid of. I know it’s scary. But there’s nothing to be afraid of, it’s going to be okay. And when the staff isn’t looking, we can draw on the walls. And I did wasn’t too happy about the drawing on the walls. And I didn’t know all this was going on Victoria. And so Zoe’s energy, her, her desire to help other people, even when she was struggling, I couldn’t be more proud of her. I couldn’t be more proud of the person that she was and the energy that she brought, and that’s still to this day with her friends talk to me about how much she helped them to get through that time in their life, because no one else was coming to help them. The staff was doing their jobs, the doctors were doing their jobs. But these kids were there to support each other shoulder to shoulder because they knew that this is how they were going to get through those days. Sometimes those minutes of being in these adolescent units. And I’ve never seen a more creative set of kids a more create immense intelligence with the kids that were in these units. And she would always introduce me to her friends or the staff or the doctors, she was, this is my dad, hey, Zoe’s Dad, you know, and, and so I was so grateful for that. And I am just so ultimately proud of the person that she, I still say is, because I feel like her energy is always going to be with me, I, her body might not be here, but Zoey will always live on in my heart. And I’m just so grateful for that. Because I don’t know about you, I was always afraid that eventually I was going to forget about her, or that the love would stop. And it does. And in fact, I love Zoey more than I did the day that she was born. And I’m so so grateful for that. Is that been your experience as well?
Victoria Volk 18:13
Yeah. And actually, I just want to highlight something that you just said and that I think if we’re it’s when we’re able to actually think of the person the loved one and not get pulled into and sucked into the the, the traumatic memory or the horrible memory, the sadness, that’s when we really honor our loved ones, and remembering them as they would want us to remember them. Absolutely. And how we would want to be remembered if it was us, someone was grieving. And I think people fear like you just alluded to I think people fear that with healing comes this. I’m gonna forget or I’m going to, it’s by not feeling sad and tormented by this loss. It’s somehow dishonouring my loved one and the total opposite is true. And, and the seat at the table is never is always going to be empty that sadness will always be there but it’s not going to it there it is possible like you have said it is possible to think of that person with joy and love and carry on in your life. In their in, in their memory that is honoring. Absolutely. How have you been doing that?
Eric Hodgdon 19:32
I found a tremendous energy and direction about two years after Zoey died. I knew I wanted to talk about Zoe and I didn’t want it to be in a place of, you know, of of. I’m just always going to be sad about this. I wanted it to be a place of sharing who Zoey is and was as a person and I was invited to attend a leadership event in Dallas, Texas. And I was introduced to one of my mentors, his name is Bo. He said, He’s a former football player of all things. And Bo invited us to come out to California and write our story. And I’ll never forget that experience. Because the day one of this storytelling event, Beau asked us specifically and explicitly to write about a pivotal moment and mind our lives. And he said, Did you typically this pivotal moment is anywhere from eight years old to 14, and so I got stuck there. And something really happened between eight and 14. Yeah, a lot of stuff happened, I was a kid and kids are always awkward and all that. And so I wrote about a very benign situation where I told on a girl that I had a crush on because she smashed my devil dog at lunch, and she got a detention. I’m like, that’s not my story. But I was so upset with myself because I was trying to find a way to make that story work. And the challenge was, is that that was the story, I was telling myself that I needed to kind of stop that I that I didn’t know how to talk about Zoe, so I’m not going to. And that was really showing up that weekend in a very powerful way. And the knock on the head came from one of the story coaches at this event. And I went up to him afterwards. I said, Man, I don’t know I’m just not feeling it. He’s like, Well, what do you got? I said, Well, I, a girl I had a crush on I crushed her, she crushed my devil dog at lunch. And I told her, he’s like, what else he got. I said, Well, my daughter took her life two years ago. And he’s like, dude, that’s your story. And I just gave me permission to talk about it. And I felt so open to the point where I went back to my hotel room. And for the next four hours, I wrote, I just bled on the page for the next four hours, which I still have the notebook about the moment that I walked into the ER that night, and my experience of living for the last for the previous two years. And I felt this tremendous weight come off of my shoulders. One because I wanted to share Zoey in a way of who she was, and how she impacted my life, how she impacted all of our for her friend’s life, how she impacted my family in such a very positive way. And the biggest lesson that she ever taught me was that life is going to knock you down you’ve got to get back up again. As I saw her do that time and time and time again and I understand that ultimately the weight of her what she was feeling was too much. But in the the odd thing is is that in Greek, the name Zooey means life and so knowing that when we get knocked down in life we have to fight to get back up every time I that’s the story that I wanted to tell. And so honoring Zoe became about telling not only my experience of losing Zoe but working through that battle within yourself to honor your lost loved one and yourself at the same time because ultimately that’s okay. And and you can find some energy and some direction you can find some you can leave that nasty survival mode behind you because is it really serving you right now? Yes, at the beginning, it’s necessary and I think Victoria You and I were talking about at the beginning how important that is to survive first, but survival should be temporary. You can let yourself remain in survival mode like most people do, or you can let it sink in that just because you lost your loved one that your life is not lost, too.
Victoria Volk 24:05
That’s a quotable right there. Let’s hit the rewind a little bit. Okay, who was the Eric before Zoey?
Eric Hodgdon 24:14
Before Zoey was born or before? So we took him for it
Victoria Volk 24:18
before this experience? Like, what was what what do you feel like the trajectory of your life was Did you have a certain passion or something that really lit you up? And was the reason you got up every day? Like,
Eric Hodgdon 24:32
yeah, I’m a career IT guy. I was in it from a very early age. It was all self taught. And it spoke to me when I was 22 years old. And it was a career that I could just continually move up in. But what I was finding was that I was I was continuous. I was in a job of service. It was helping people to get their computers to get back up to a certain point where they could use them and so So that fulfilled me. And I liked that line of work. It gave me a sense of accomplishment if there was a massive, complex problem that needed to be solved, and finding a solution to it, and storing that in my memory banks and how I could use that moving forward and other situations that came up. And I think everybody experiences that too. It’s those big lessons in life that you actually store and you can pull from and they just, that’s where your strength comes on, you know, and so 25 years and it and it was, you know, Zoey and I, I was divorced in about 2005, so about 15 years into my career. And I would have my girls every weekend and every week, throughout the week, and it was a fantastic opportunity for us to bond and connect. And we used to do a lot of things, we would go to concerts, we would go to the beach, we did the beach a lot up in New England, that’s just a thing to do. Up there. And we would take day trips, sometimes we would come down to New Orleans and visit some friends who lived down there. And I just valued that time with them. And there were some weekends that that Zoey and her sister those two were like peas in a pod. And they would just spend all weekend upstairs in their room with the pile of arts and crafts, supplies, just making stuff and sometimes those don’t, that’s really good, you know, and, of course, every parent says that about their kids artwork, I have saved every scrap of paper that they drew on. I have saved every every a trinket that they made for me or craft that they wanted to give to me. In fact, behind me this painting, Zoey painted this for me for Christmas, the month one month before she died. And and I absolutely loved this because it she’s at peace in this image. And I know it’s her, even though it’s supposed to be a Buddha and and so I’m so grateful that I have this gift. And I think of everything that they did everything that they drew every experience that we have as a gift. And so when I started to focus more on the gifts that I was getting along this path of being a single dad with them, I was I was starting to recognize the value of what it means to be a parent. And I started to think that’s where a shift started to take place in me I wanted to do more how to do something that was bigger than myself. And so I had actually a few years before so he died, I started to look at other ways of earning a revenue that was not earning income that wasn’t based on a nine to five job. And so I tried my hand at some network marketing I tried to get I got into some personal development because I just found such great depth in that and, and what made me tick, how I could help others. And when Zoey died, I felt like I had a good set of tools to work with. Even though I had to access them through all the fog. It took a while to really get a good handle on what I had at my fingertips at this point. And I and and yet at the same time, I still had some defaults, I still had some of that baggage that I was pulling into this situation that was not helping me. And I think that just there’s been so many gifts since so he has died that have just shown up on the path only because I’ve continued to walk and let those things come to me and be open to them coming into my life. And have you had a similar experience retort to that.
Victoria Volk 29:04
Absolutely.
Eric Hodgdon 29:06
Can you give me an example of that?
Victoria Volk 29:08
Well, if it wasn’t for me actually working through my own grief, I wouldn’t be a Reiki Master I would not be a grief recovery method specialist I would not have this podcast I would not everything that I’ve done since clearing out my baggage has been as a result of taking ownership of my baggage and doing something with it. Like not working through it and getting rid of it.
Eric Hodgdon 29:41
Yeah. And that’s not something that happens overnight right? I mean that takes time. And and where did you start to feel like you are gaining some traction with that process.
Victoria Volk 29:52
Well and as we kind of talked earlier, my personal development started in 2014 And my youngest was starting kindergarten. And I was closing, I was really contemplating at that time closing a business I’d had, that was really my creative outlet, I was a photographer, and I built that business from scratch, and not having an online social network not having people to tell me what to do, you know, there wasn’t, I wasn’t even in a Facebook group, you know, till well into my business. And so it was really grassroots, have a have an experience in entrepreneurship. And that taught me a lot. And all of that all of that prepared me to really dig as far as I was, I had never gone before in my grave, right? Yeah. And so my question for you is, given that you had done some personal development work, and you know, what we learn, and we tend to give off what we? Yes, I think is, okay, so like, if you’ve done, I look at myself, before person, like digging into personal development, wanting to learn about myself, I think of myself as the pre personal development parent. Yes. And then I look at myself after and I’m like, Whoa, there is a stark contrast. Yes. Because, again, like you said, we resort to the defaults, what we know and what we’ve been taught in childhood, and for what the work that I do, particularly around grief. And because I didn’t deal particularly well, at least I thought I was that’s the thing, we think we are ready for dealing with it, we think we’re I’m fine, you know, sure, yeah, I got this. But yet all of these behaviors are showing up on a on a daily basis, or we are just angry people were just angry, or our kids show bring out in us what is not resolved within us. Right? And that’s what was happening a lot. Hmm. You know, when I look in hindsight, and so that’s what I’m kind of curious about for you, and as a parent that you were before, versus how these experiences have shaped you as a parent now.
Eric Hodgdon 32:21
Wow, that’s such a powerful question. And a great one. One, because I’m going I’m thinking back to how I dealt with difficult situations and challenges as a husband, as a father, early on. There’s I think there’s two ways the personal development has taught me that I could look at it one of two ways I could look at it that that’s just the way it’s going to be, take it or leave it? or How can I get better at talking to my children? How can I get better at talking to my spouse? How can I get better talking to my family, friends, and connecting deeply with others, who we may not know what they’re struggling with? But how can we make those deeper connections with those around us that we love, because that’s typically what suffers first, when we’re struggling. And I don’t know if we can afford to do that, in this day and age with those statistics that you were sharing with me at the beginning of the podcast, Victoria. We, I think as a human race, not as an American, not as any other country, or a citizen of a country in this world. But as a human, I believe we have to get better at connecting with others on a deep level, showing them that it’s not just about sending a text to say, hey, Call me if you need anything, it’s showing up at their door. Or it’s sending them a text and asking them how are you doing? It’s doing some outreach to the people that are closest to you. Teenagers are a good, a good point. I just heard this the other day for one of my mentors, his name is Scott man. And Scott was saying he was you know, if you ask your child or a teenager, how their day was they’re gonna blow you off. They’re not going to talk to you much. But if you ask this one question, what annoys you today? Oh, man, the floodgates open up and just ask that question of your team who annoys you today or what annoys you today? And they will give you the goods? They’re going to answer you in a narrative format because we are story animals. We’ve been communicating with story long before we could actually speak language. And so that is one of the biggest ways that you can make deep connections these days is story. And going back to when I went to that story workshop out in California for the first time, I saw the power of that and how that connects people who might be struggling with their own grief that you and I would not be talking if I didn’t share my story. And likewise, you wouldn’t be talking with me if you didn’t share your story. And so it is healing. Our brains are wired for story. And it has been scientifically proven. That story helps our brains heal. And so I use that opportunity to, to heal at any time I can. Somebody just kept my door and it’s somebody that’s staying here with me for two days. Hold on one second. Sure. Thank you. Sorry about that. That’s okay. I didn’t realize I locked my front door. So I’ve got some family friends here. It’s interesting. One of my guests Her name is Cory. And Cory. I wrote a book a couple of years ago called a Sherpa named Zoe. And corys. Dad is at the epicenter of this book. Before I got to my story of Zoey losing Zoey, I wrote about my experience of of being a friend to Corey, his brother, Cory, his brother and I have been friends for 42 years. And we were 19 at the time, and she lost her dad, my friend lost his dad. And it was such a powerful experience to, to know what to do with that. And even speaking to what you and I were talking about in terms of how you connect with others, especially after a loss. I was just talking with Cory before this podcast, and she just said, she said, you know, you did something different than other people didn’t do and I don’t know, you know, I just had the, she said, You showed up and you were there with us. Even if you were just hanging out with us, you were there. And she said, that meant more to my family and me then then you could imagine. And so I think that’s where we can continue to make deep connections is to show up for those that we love and care for, and be there for them. I don’t know about you. I did not want to hand my grief off to somebody else. What I wanted to do was to have somebody just be an empathetic witness and hear and actually listen to I don’t want them to solve the problem because they can’t walk that path for me. But no, I don’t think people are going to dump their grief on you. I think they just want to be heard.
Victoria Volk 37:24
Absolutely in grief recovery. Call it a heart with yours. Yes, perfect. Oh, that’s perfect. But some people aren’t that person. Right? That person. Yeah. And I think that’s important to mention in that. And I think too, we this is my belief in that we we can we are able and this is why healing ourselves is so important. And working on ourselves is so important. Because the deeper that we allow ourselves to go with our own grief and our own challenges and, and whatnot. Is that’s the depth we are able to go with others and for others, I believe.
Eric Hodgdon 38:00
Yes. Absolutely.
Victoria Volk 38:03
Yeah. What were some of the unhelpful or hurtful things? Did you hear any of those types of comments?
Eric Hodgdon 38:12
I always laugh at this because I think that personal development helped me get to a place where I didn’t let it get me angry or frustrated. There were some folks that didn’t show up that I expected to show up for Zoey and for our family, some close relatives, even some family friends that I was just okay, I don’t understand why this is happening. But that’s not for me to understand right now. I remember about four years ago, I was visiting Zoe’s resting place when one summer afternoon and I always went over there I went over there once or twice a week just to say hi sometimes I would take a little Bluetooth speaker and just set it down and play some of the music that she used to like to listen to and so it just felt I felt closer to her there. And I was I just showed up at the at the at the cemetery and got to her resting place and there was a woman that was walking by and she said so sorry for your loss to thank you so much. And you know who is this? I said it unfortunate it’s my daughter. And she said Oh What happened? Do you mind me asking? I said unfortunately she took her life. And without skipping a beat. She said, Ah, you’re young, you can have more kids. And I didn’t get angry with it. Right? I my eyes kind of like and you know what I imagined Victoria, imagine that Zoe was standing in front of me looking at me like you just looked at me like did she didn’t say that. Right? And so I couldn’t get mad at it. That the personal development and the growth of understanding that people are where they are and I can’t expect them to be in that same place. allowed me to kind of release it and be like, that’s where she is. That’s how she deals with loss in her life, and so no judgment, that’s just where she’s at. And so I wasn’t in a place where I was going to take offense to that. In fact, I said, You know, I need to remember that so that I have conversations later on, I can share that. So I think that there are times when things are not done or not said, that can feel make you feel a bit lonely. In all of this, there are, you know, when somebody says you aren’t, you know, you just need to get over it. Again, that’s their level of healing in any setback that they’ve had in life, their baggage, their defaults. And so it’s typically not about you, when they’re when somebody is saying something to you like that. And so if you can let that thought or that statement, or the words that are you read, or are said to you, literally and figuratively pass through you and go out the other end. You are better off. Because Yeah,
Victoria Volk 41:11
yeah, I was just gonna say, I think as Grievers you almost need to have selective hearing.
Eric Hodgdon 41:17
Yeah, I think so. I mean, is it going to help you in any decision that you’re making on the grief journey? Is it hurting you? Or is it helping you heal?
Victoria Volk 41:27
And here’s what I was gonna add to that, too. I think that’s reason why that’s like reason 385 million to, you know, work on yourself, because someone who hasn’t really allowed themselves to process what they’re feeling. They really could take that in and it could just downward spiral them that day. You of course, that’s that’s why things like that are very hurtful and hard. They can actually be harmful. For people. They can I think, especially with teens, can we speak to that a little?
Eric Hodgdon 42:02
Yes, absolutely. I can’t tell you how many times I had conversations with always friends were a thought turned into a problem that they had the one thought and and so I remember, it was about a month or so after Zoey died. And I’m standing in my kitchen with one of her very good friends. His name was Jerry. And Jerry was just somber that day, he was the weight of the situation was really settling in for him. And he was missing. So he’s like, so he’s gone? What am I going to do? I just I was taking a lesson that I learned from my therapist, because I asked my therapist, the same thing. When I was going through my divorce, what am I going to do, and she was very explicit. And I shared the same thing with Jerry and I said, Jerry, you’re going to get up in the morning, and you’re going to put your feet on the floor, you’re going to get dressed, you’re going to get breakfast, you’re going to go to school, you’re going to come home, have dinner, and you’re going to practice the guitar for hours like you have since you were four years old. And after that, you’re going to go to bed and just do the same thing over and over again, until that becomes the norm, despite how you’re feeling. That’s how you keep going. That’s what you’re gonna do. And so it’s giving those resources it’s reminding the kids, the teens, anybody who’s struggling, that there are resources out there, whether it be people, parents, others, teachers, others in your community, even good friends that have walked this path before and can meet you where you are on your path and help you walk with you on it. Give you some solid advice make you laugh when you didn’t think you were going to be laughing again. And I used to share a story about Zoey with some of her friends. I got a call one evening from one of Zoe’s friends I’ll call her Cammy kameez mom called me and it was probably 1130 at night and like they recognize the number but I answered the phone anyway because those calls on the Saturday night 1130 are always good right? And so kameez mom is like hey, this is kameez mom, just want to let you know that. We think Cammy is going to end her life tonight. We just want to let you know like wait, she’s going to or she did like what’s going on here? And she said No, we’ve just we tried everything. We don’t know what else to do. I just want to let you know because I was kind of throwing our hands up like we just don’t know what to do. I was pissed like that. No, this I said Look, I can tell you right now as long as your daughter’s breathing, you’re fighting for her. And you please put me on the phone right now. And she’s I don’t know if she’ll want to talk to I please if you need to throw the phone in the room. I’ll scream it out. I don’t care, but get her on the phone. And so I got candy on the phone. She was embarrassed, because her mom called me and I said, Look, kid, this is me. I’m Zoe’s Dad, you know this. I’m okay. You can tell me anything. I’m not your mom and dad. What’s going on? She said, I just don’t care anymore. I just don’t care anymore. And I asked her to tell me more about that. I wanted to ask her some thoughtful, open ended questions that weren’t yes or no, I wanted to find out what she was struggling with in the moment. And so I may have had to ask her a few times What’s going on? Like, what? I just don’t care anymore? Like, I just don’t, I feel like I’m a burden. So that Oh, okay, we’re getting somewhere. And I shared with her, I said, you know, there are people in this world that probably could be a burden, you’re not one of them. You know what, you know, you’re 18 years old. And you’re not a burden. we all struggle. We all have moments when it feels like nobody cares. When it’s too hard to go on. We feel like there is just no other way. And so we just settle on some really dark thoughts, and it’s that scary. Said, but Sweetie, you can find something that is that lights you up. And and makes you excited and motivated. She said, I just don’t feel like I want to do anything else, you know? And I’m like, I feel like I’ve done everything I can do in my lifetime. She’s 18. I said, Well, what did you like to do when you’re growing up? Well, I said you’d like to take pictures now sometimes. Did you like to draw a little bit said, What about animals? And oh my gosh, I love animals just go to the zoo. Like, sure I heard the turn. And so so keep going with that. Tell me more like what do you? What would it be like for you to do something with animals, and she just started talking? I would be fantastic. You know what I want to always do, I always wanted to be a vet tech. Okay, so Kimmy, here’s what we’re gonna do. Tomorrow morning, we’re going to get back on the call and get back on a call. And we’re going to go through the phonebook or we’re going to go online. And we’re going to look for that tech positions and how you start that process. And she was so excited. It’s that’s where we have to get really deliberate and intentional about connecting with kids. Because they need to be heard. They need you to know they they need you to know that. Even though they may feel like you’re not going to get them I understand where they are, that through open ended questions, they’ll tell you exactly where they are. And Cammy ultimately didn’t go for a vet tech position. But it was enough to pull her back from the edge to give her a different optic on that there were options out there for her. If that makes sense.
Victoria Volk 48:04
Do you think for especially older teens, maybe 16 1718, I’ve often wondered this just in the last couple of years. If it’s just this pressure of making something in your life doing something with your life, pressure to please our parents, you know, please the parents are pleased the community are pleased. Because I what I see often not well, not often, but I see a trend and especially with teens that are high achievers. Hmm. I don’t know the statistics of the suicide rate of high achiever. teens, right, but sometimes it’s just the pressure, right? It’s too much.
Eric Hodgdon 48:48
Yes.
Victoria Volk 48:50
What have you found? I don’t I don’t know, do you work specifically with teens now,
Eric Hodgdon 48:55
I work more with folks who are on the other end of a loss. Okay, and so I, what I will always do, and will always have my door open to I give my phone number out all the time. And I’ve talked to a lot of parents who have struggling teens. And I say here’s my number give this to your kid and tell them to call me but I don’t leave with that I always follow up and check in how are how you know, how’s your child doing? How’s your kid doing? And I here’s the thing that I think is is is going to be important. And I’m seeing this now, especially now I’m hyper focused on it, seeing how my my boss talks to his three boys and connects not talks to but connects with his three sons and how he asks them questions. And because all of them are in high pressure situations, teens, you know at 18 you’ve had 18 years on this planet and at that age, I think that there is a pressure to become something bigger. Now that could be an external pressure that’s coming in. But a lot of times, it’s an internal pressure that you’re feeling. And that can be overwhelming. And I guess the best piece of advice I would give there is that it’s giving yourself permission to figure things out on a pace that works for you. If you try to figure out your life, for somebody else, you’re just adding fuel to the fire of that pressure. But give yourself permission to fail, give yourself failure is not a bad thing. Failure is a learning opportunity. You know, failure, you fail at john Maxwell say you fail forward. Oh, my gosh, I wish I would have had that advice A long time ago. And so being able to give someone permission to learn and grow and adapt, I think that helps with the pressure. And I know that some people aren’t necessarily they’re not only kids, but even some parents and adults, they, they may have had that same pressure when they were growing up. And so they’re just kind of bringing that that forward into their family as well. And so, but but giving yourself permission to figure things out, and permission to fail, permission to learn, and giving yourself the runway that you need. I you know, I think that when we place ourselves in a box, that’s where I think this anger and frustration really comes out. Because if we step outside of that box, it’s almost it’s almost like we’re conditioned to that something’s going to happen. You know, we’re either going to be shunned or shamed or cast out of the group or whatever it might be. And that’s very old. That’s, that’s why are deep within us as well. But it’s okay to give yourself that permission, that box can be as big as you want it to be. There’s no limit to that box, and doesn’t even have to be a box. How about removing those borders and just saying, I’m going to figure it out on my own pace at my own time. And, and I think that that can even help some adults as well. When they’re talking about grief in kids, if they’re talking about grief, kids, if they’re talking about situations that they feel like there’s no out from there in that box, they cannot see a way out of that situation. And there’s never just one solution to getting out of that pain, or that struggle, or that situation, there’s always a multitude. And sometimes you need others to kind of help you figure out what those other options are. And that’s okay to get it’s not a weakness. It is absolutely it’s actually a strength. When you think about it, if you’re struggling, you’re on the precipice of figuring out something very important for your life. And if you look at anybody out there in the world who has faced a deep struggle, and they’ve come out of the other side, we’re wired for that. And so there’s there’s make those options available and connect deeply with those around you. And you’ll find that you’ll be able to have those options that you didn’t think you had previously.
Victoria Volk 53:11
Well, that’s a lot of advice and best tips and how, you know, that’s great. Thank you for sharing that. So what has your grief experience taught you?
Eric Hodgdon 53:23
It has taught me that there are so many things to be grateful for in this world. Zoey was in my life for 15 years. And I am so grateful that she was I got to be her dad. I’m grateful that I have the capacity to wake up in the morning and take another breath and see the sun or even the clouds doesn’t matter to me obviously. It’s it’s gratitude for the folks that I have in my gratitude to be able to share with you and your audience. I mean it’s there’s so many things that are are so beautiful in this world that I feel like gets us back to our nature and that’s been probably the biggest lesson for me is that I’ve I’ve gotten back to my nature, what matters most in life. And when you look around you and you say cheese, I’m really grateful I’ve had a rough day at work today, or Yeah, my kids were frustrating me and all that stuff. But you know, I’ve got a roof over my head. It’s the things that you that are invaluable. You know, I have eyesight or I have the capacity to breathe and the capacity to see some nature of that side or plan a trip or even during the pandemic, families coming together you know, board games selling out because what else you gonna do you know, I mean, just there’s so much that there is grateful that you can have gratitude for and it is really getting back to what matters most
Victoria Volk 54:55
is gratitude the foundation of the work that you do with the people you work with?
Eric Hodgdon 55:01
Ultimately, yes, I think that it certainly was an accelerant to my healing. Because I was just I was even though I every day, I was using a journal called the Five Minute Journal, I don’t know if you’ve heard of this journal or not. It’s straight, six months journal, and every day, it’s one page, where you write down three things that you’re grateful for, in the morning, an affirmation and three things you want to accomplish that day. And then at the end of the evening, you know, you write down, what’s your biggest takeaway from the day. And there were days when I would write the same three things down, grateful for life. I’m grateful for Zoey. And I’m grateful for the roof over my head. And sometimes I would introduce new things to be grateful for. But I think overall, it was focusing on that. That that kind of pulled me out of those doldrums of feeling like, this is going to be really hard. Yeah, it’s hard. But you know what, I’ve got a roof over my head. I got to be Zoe’s dad. I’m still Zoe’s dad. I’m connected with her friends. And Zoey, by the way, if I say, you know, Zoe, I mean, I, in my mind, Zoe is everything that encompasses Zoe, or my family, her friends, the energy, her, her voice, all of it. And so yeah, gratitude is at the heart of it, Victoria.
Victoria Volk 56:39
I have a curiosity question, please. So I hope you don’t mind me asking because I think it would be helpful for our listeners who may have found themselves in the same situation of losing a child.
Eric Hodgdon 56:54
Okay.
Victoria Volk 56:55
I’m curious if you have kept her room as it was.
Eric Hodgdon 57:00
Well, now that I’m down here in Tampa, I did for five years. I did for five years, I did not touch a thing, if anything I added to it. It was a few months after Zoey died, and I was invited to go down to her school. A few towns away. It was a therapeutic school that she was attending. And they wanted just to share with me two things, one that they were planting a tree and so he’s on are in their courtyard, and then to to present me with a shelf that Zoey had started to make. And that’s the shelf right there that the kids finished. And I brought that back to my house. And I placed the shelf up in her room and I set it up as if I think Zoey would set it up all over Chuck T’s were in one of the cubes. And all of her art supplies were another cube and some of her incense was on top and you know, some rocks, every time I took a trip, I would collect a rock and I would bring it home and put it up in her room and, but everything else in the room did I didn’t move it, I didn’t find the energy to move it. Because I was afraid. I felt like if I were to do anything in this room, that I would be cutting myself off from Zoey completely. And nothing could be further from the truth. And when I made the decision to sell that house, five years later, it took me two days and three boxes of tissues to go through that room. And she had clothes that other kids could wear that I donated to a goodwill, I can’t remember the name of the company. There were boxes of her drawings and notebooks with poems in it. I still have all those. Her ukulele is with her brother, her drum set I donated that to a kid who was eight years old in town who needed a drum set was time. And I didn’t want to do anything with her room until it was time and there’s no time frame on that. And so there’s some folks that might be with that same room at their house for one year, one month. 10 years longer. It’s okay. When it’s time, it’s going to be okay, you will find a way to make that make it happen. And so one of the biggest lesson I think afterwards when the room was done, and I was looking at this room was just a mattress on a bed frame. So he’s still with me. I never got rid of Zoe. I’m not leaving her behind if anything, she’s still with me. And so I took a ton of pictures And I have those pictures. And when I look at him today, they don’t bring me sadness, they actually bring me joy because I get to see a snapshot of who. So it was, it’s always going to be with me. And just like Zoe’s memory is always going to be positive. It’s just stuff at the end of the day, and the memories are always going to be with you. And so nobody can take that away from you. And so you’re not really letting them go. In the sense of forgetting them. You’re actually helping yourself heal. I think, when you do have those moments in your journey where you can actually move on, it’s just another step on the path.
Victoria Volk 1:00:42
Thank you for sharing that.
Eric Hodgdon 1:00:44
You’re welcome. Thank you for asking.
Victoria Volk 1:00:45
So what gives you the most joy and hope for your future?
Eric Hodgdon 1:00:50
that I can continue to share Zoey. You know, one of the I think one of the most profound events, I guess, if you want to call it that that happened was when I joined option B, many years ago, I was asked to be a moderator later on. But early on, when there was about 500 people in the group. Option B was started by Sheryl Sandberg, who’s the CEO of Facebook, and she lost her husband in early 2015. And she wrote a book called option B, it’s fantastic book, and I would recommend that to folks. But She subsequently started this community. And I joined in early April of 2017. And the next month, when Mother’s Day was approaching, it was the day before Mother’s Day and I wanted to make a post for the folks in the group. One because I was thinking about so his mom and how hard it must be for that. For that Mother’s Day that was coming up, especially for Zoey not being I know what it is on dad’s Father’s Day. But I just think about this. So I know that there was some mothers in this option B support group. And so I just did a video and I just said, Look, if you’re a mom, if you’re a mother figure, if you’re missing a mother figure, anybody in your life that reminds you of Mom, I know tomorrow’s going to be difficult for you. But if it’s okay, I’d like to offer a little suggestion for you. So that when you wake up in the morning, the tendency is to let the pain make you feel like you just want to stay in bed with the curtains drawn. But I would invite you to sit up in bed first, then put your feet on the floor, open up the shade, go get dressed, and go do something in honor of your mother figure that day. Even if you’re a mom. And you’re missing a spouse that doesn’t matter. Or wife, you’re missing a spouse doesn’t matter. Get up and do something that honors your loved one. And later that night. My my phone lit up with a message. And I looked at it briefly I was half asleep and it was it said Sheryl Sandberg on it. I’m like, there’s no way. So I opened up my phone and I looked and sure enough, that was Cheryl. And she basically said hey, look, I just wanna let you know, I just shared your video with all of my friends and family. And would it be okay with you if I shared this on an interview with Oprah next week? No, no. So I said no, please do. And thank you so much. And I was so touched by that. And so what that taught me was that it doesn’t matter who we are in life, we could have billions of dollars. We could be working as a car mechanic or in a corporate job, we could be a child, we could be a teen doesn’t matter who we are. We’re human, and we’re all wired pretty much the same way. And grief is going to hit us. No matter what we do. No matter how much money we have in the bank. No matter what gender or ethnicity we are, we’re human. And so we can always find ways to make a connection that changes someone’s life. And if we don’t step into the arena and do that, then I think we’re leaving a lot of value on the table for those that are around us family, friends or otherwise.
Victoria Volk 1:04:29
My kids roll their roll their eyes whenever I give him a quote. I think of that.
Eric Hodgdon 1:04:34
Thanks, Mom. Yeah. Is it again? Is it worse than a dad joke? I mean, because those are pretty bad too. Right?
Victoria Volk 1:04:46
Thank you for sharing that. Is there anything else you’d like to share?
Eric Hodgdon 1:04:51
No, I’ve just I’m deeply grateful for being able to share Zoey with you and your audience, Victoria. It means the world to me that That, that I can still say her name. And it brings me the same amount of joy, as it always has. And I just am so grateful for the opportunity to be here with you and us fantastic questions. And you really made me think about what has really made a difference. And I’m gonna walk away from this discussion, feeling like I’m full today. So thank you so much, it really means the world to me.
Victoria Volk 1:05:31
Thank you, likewise. And I think that the theme of this interview, conversation I prefer to call it is impact. Yes, we don’t often realize the impact that we have on other people. Right? And that is regardless of our age. Yes, regardless of our age. So if there are any teams listening, you might think you have no friends. And I would argue that that’s probably not true. But I would also add, I have no doubt in my mind. If you’re a team, if you’re anyone listening to this, you have an impact on people in their lives, you impact people. And your presence would be lost and missed.
Eric Hodgdon 1:06:26
100% so true.
Victoria Volk 1:06:29
Thank you so much for sharing, where can people find you if they like to connect with you?
Eric Hodgdon 1:06:35
Thank you, Victoria. People can find me online at erichodgdon.com. And they can also pick up my book. It’s called a Sherpa named Zoey. It’s available on Amazon. And I hope it helps in some way. And finally, I have a TEDx talk that I performed two years ago that is available and I can provide the link for your for your audience as well.
Victoria Volk 1:07:02
Perfect and I will provide the links in the show notes for everything mentioned. And remember, when you unleash your heart, you unleash your life. Much love.
Cancer, Child Loss, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Faith Wilcox | One Year to Live; Forever Without My Daughter
SHOW NOTES SUMMARY:
On a day like many others, Faith had taken her daughter, Elizabeth, to a doctor’s appointment to investigate Elizabeth’s knee pain.
What was thought to be an innocent visit to the doctor, who suspected the issue was nothing serious, quickly turned the family’s life upside down. After an X-ray and further testing, they learned Elizabeth had Stage IV osteosarcoma, a rare bone cancer.
They didn’t know it at the time, but Elizabeth had one year to live. The last three weeks of her life were on Hospice care. Faith would spend the next 10-12 years of her life grappling with the sorrow of losing her daughter before she felt like the grief had loosened its grip on her life.
The writing she had done while at Elizabeth’s bedside would later become a memoir. It’s about the story of a courageous and compassionate young woman and a grieving mother and family. Faith shares insights into things she learned at her daughter’s bedside, the many stays in the hospital, tips to understanding and absorbing the medical jargon, and all that came after.
What would you do if you knew you had one year to live?
RESOURCES:
CONNECT:
Victoria Volk 00:00
Thank you for tuning in to another episode of grieving voices if you’ve been here before And if this is your first time Welcome. Thank you for being here. And Today my guest is faith Wilcox, and her 13 year old daughter Elizabeth was diagnosed with a rare bone cancer that took her life. faith journey from grief and despair to moments of comfort and peace taught her life affirming lessons, which she shares today through her writing. face. Faith is the author of Hope is a bright star, a mother’s memoir of love, loss and learning to live again, which will be published in June 2021. Faith is also the author of facing into the wind, a mother’s healing after the loss of her child, a book of poetry. A longtime resident of Massachusetts faith leads a journal writing program at Mass General Hospital for Children for patients and their families designed to give participants the opportunity to express themselves, alleviate stress, celebrate victories, and honor their grief. And today, I honor your grief by having you as a guest. So thank you for being here.
Faith Wilcox 01:10
Thank you very much for this opportunity.
Victoria Volk 01:13
So let’s start share the story of Elizabeth with us.
Faith Wilcox 01:18
Of course, Elizabeth was a very happy, outgoing, often Silly child. And she was a star swimmer and the soccer player. And the summer of her seventh grade year, she started complaining of pains in her knees, and, and one knee and after a short period of time, we went to see the doctor, the first doctor did not think there was anything unusual going on. And then a few weeks later, we went to see a a orthopedic doctor who took an X ray. And then our world started tumbling in on us. I wish saved a call very soon thereafter. And we went into Mass General Hospital. And I didn’t know that we were going to see an orthopedic oncologist. But when we entered the room, that was quite a big shock for me. But Elizabeth fortunately, didn’t see the placard on the door that said oncologist, but we could see when we were in the room that we were in a very different kind of setting, because many people had prostheses or some apparent problem. So after three days of diagnoses and a small surgery, we found out that Elizabeth had osteo sarcoma, which is a very rare type of bone cancer, and it’s a very aggressive type of bone cancer as well, because bone cells are growing in adolescence quite rapidly. So it’s a terrible time to get the disease. Listen to this had nine months of chemotherapy and radiation treatments. It was a very, very rugged ordeal. She did extraordinarily well through the whole process. Of course, she did well in her spirits. But of course there were times that were so very hard, just very hard for her to lift her head off the pillow. But she always had an engaging smile. And that lifted my mood and lifted the mood of people under those around her who loved her. She had a great outpouring of support and love, which helps sustain us during these really difficult days. Despite all of the work that was done to help save her, Elizabeth cancer just kept on progressing. And she died in my arms one year after she was diagnosed. One thing that I really love to remember about Elizabeth is that about halfway through her treatments. When we were in the hospital, she would get in her wheelchair, wheeled herself down the hallway, go into rooms and speak with children who had no the arrived on the hospital floor. She would explain procedures to them in a way that they could understand. She took away a lot of their fear. She didn’t have very much energy at this point. And for her to share her meager energy really to help others was quite extraordinary. And parents would come up to me and say, we had so much fear walking into here but seeing Elizabeth and hearing her explain what’s going on has really helped alleviate a lot of our anxiety. We’re really so very appreciative. And this is part of what Elizabeth was she was only 13. But really she started to blossom into a young woman in this process and her compassion for others really grew. And that’s something that’s one thing that I’ve learned through her is that understanding how much compassion can help people in their times of need.
Victoria Volk 05:03
That’s beautiful. I think a lot about my own daughter, she’s 14 now. And she’s walking sunshine. very compassionate and thoughtful of others as well. And so my heart goes out to yours. Thank you, Elizabeth. And I do have a medical ish kind of background. And I am curious. Because actually, there’s someone in my community too, and I’m not sure if it was the exact same cancer, but I know it was a rare bone cancer, but they’re their child’s was in the hip. Was in the hip?
Faith Wilcox 05:40
Yes, It can do that.
Victoria Volk 05:44
I’m curious. When it was, when she was diagnosed, had it already spread so much that that mutation wasn’t even an option.
Faith Wilcox 05:56
They discussed amputation. But what happened is that Elizabeth, when she was diagnosed was already at stage four cancer. We didn’t. I didn’t know that for a little while the doctors would tell us information. Step by step, I think so that we weren’t totally overwhelmed. I mean, we were overwhelmed, but that I know, they wanted us to keep holding on to hope and there was a chance that she could survive it. But it had already spread like to her to her femur and into her hips and into her sternum.
Victoria Volk 06:42
After her while you’re going through this, I know from your information that you shared with me that you do have you have another daughter and so was she, like, how? How did you navigate that as a family that whole year?
Faith Wilcox 06:58
It was extraordinary, extraordinarily difficult. On top of all this, I actually separated from my husband then and went to live with my sister we were our marriage was quite fragile anyway. And I found that he was really not able to help us and provide the support that we needed through this very, very difficult time. So I was in the home with my sister and her husband and her children. So that was very supportive for my older daughter, Olivia. And Olivia and Elizabeth were best friends. They were only 18 months apart in age. Academically, they’re only one year apart. So they went on a school bus together, they played and had recess at similar times. I had lunch at similar time. So they were by each other’s side all the time. And it was absolutely devastating for Olivia to see Elizabeth grow weaker and weaker and thinner and thinner. And she did the best that she could, but it was so hard for her to because she was only 15 at the time. And she had started a new high school which was much bigger than her middle school. And I remember one day she came home and she looked really upset and she said Mom, kids are complaining that their hamburgers, overcooked mean, don’t they understand that there’s so many more things to worry about in life. And Alex, you know, really had been thrown in the deep end. And I did my best to support her. And fortunately my sister Susie did a tremendous amount as well to help support her. She was violets best bedside when she could be. But it was lisabeth spent a tremendous amount of time in the hospital as I did with overnights and again, it was supportive my sister, and I have one other sister as well. And family members that really helped Alyssa Olivia during this time. And it was very hard for me. I felt very torn. I felt that I wasn’t being as present for Olivia as I could be. But it was so critical that I was present for Elizabeth in the hospital. So I I had to make some very, very hard decisions.
Victoria Volk 09:17
I can’t imagine that’s a lot of loss and change for a child for you. I mean, that’s a lot at one time. How many years ago was this?
Faith Wilcox 09:32
Now, this was 20 years ago which and sometimes it does seem like that much time has gone by and other times I can just close my eyes and see Elizabeth and it doesn’t feel at all It feels like maybe a few years have gone by not not two decades.
Victoria Volk 09:49
I can resonate with that. I think a lot of Grievers can, it’s you know, it’s yesterday was 34 years my dad passed and you know, it was a different This year for me, it was just, I’ve gone through an end of life. doula training recently and Oh, just conversations I’m having on the podcast about end of life or about just stories like yours like it this year felt a little different for me. And, and they always do, right. I mean, whether it’s five years 15 or 25. It’s, we evolve with our with our grief.
Faith Wilcox 10:27
We certainly do. And there are times that I’m still surprised, there’ll be something, I’ll see a friend of my daughter’s or I very, in a very loving way got a card from one of her friends who had recently had a baby, but it it, I was thrilled for her. But I also felt so much lost because Elizabeth would have now been 33, and probably would have been at the point of being married and being a mother. And so that’s just reminds me about how much laughs there is when, when a child dies.
Victoria Volk 11:06
What were the ways that others I know you mentioned your sister, and how she supported you, and we’re there for you. And what were there surprising things that came out of this experience that you learned about grief and about yourself?
Faith Wilcox 11:24
I learned that, well, grief can surprise you. There are times that can be so much harsher. And there are times that you can start to feel a little bit better. And I learned some ways to find comfort and peace. And for me those ways were walking in the woods, with my dog or with my new husband, walking by the seashore. Spending time in nature I find extremely soothing. I also do a tremendous amount of writing. And I found that if I can express myself through my writing, even things that I never really wanted to say out loud, the process of putting them down on paper opened up my mind and in many ways sort of released my anxieties that I had. And I could also write about my hopes and my dreams. But it was a bit certainly was a process. And now I know that grief will stay with me. But it is no longer disabling. I can live my life. Now I remember Elizabeth with great joy and great love. And I can go out and I can give to others in the ways that I do in my in my daily life. So I found that grief changes you. It makes you more compassionate. And it makes you more aware of the world and others who are in need.
Victoria Volk 12:52
I agree. I think when you experience the depth of sorrow, and your loss is your loss, the most important loss is your loss. Right? That’s I don’t care what the loss is. It’s always going to be painful for the person that experiences it. And so that can be our greatest teacher or it can be our greatest debilitate her. And I know there’s no there is no timeline degree if there isn’t an I speak about this a lot when it comes to grief recovery. Time heals all wounds, you know, that phrase that everybody knows, is a myth. And but I’m curious in the time that it’s been since that that loss and that you all the change that happened? How long did it take you to pick up the pieces where you really truly felt? Like, no, I really am okay, this time, like I really do. I got this now.
Faith Wilcox 13:56
It took a long time, I would say more than 10 years. It’s hard to say exactly. But I would say probably somewhere between the 12th. And maybe the 13th year, I started to be able to interact with more confidence with people. It wasn’t that my confidence was lagging. It’s just that sometimes people would bring up Elizabeth or they’d bring up something and I would feel I would either feel hurt or I would feel like I was about to cry. And I didn’t want to do that and so many different situations, especially if someone didn’t know Elizabeth and didn’t know her life. So it really took me quite a while until I build up ways as I said that I knew that I could find some comfort and peace. I also had a lot of therapy along the way. And the therapy helped me tremendously. And I learned you know, I wasn’t alone in my grief and I learned that of other people. who had lost children or lost a loved one, and spoke with them. And I sometimes would speak with other people more as a, actually I was more as a listener, and they were speaking to me of their grief of losing their child. And I realized at that point that I’d come a long way because I could listen to them, empathize with them, and not have the same pangs that I did earlier. So it definitely took me more than a decade
Victoria Volk 15:31
In grief recovery too and I have to say this, because for anybody listening, it’s never too soon. And it’s never too late to address our grief. And I walked a woman through a loss she had only three months ago. And so when I think about my grief, 30 plus years out, and it was only like two years ago, that I really addressed mine, I’m thinking, gosh, over 30 years, or 30 years of my life. Hmm. I feel like if only, if only, and there was things that I tried in between and you know, but nothing worked for me, like grief recovery did. So had I said to you, within a year or two years, this will work for you. Do you think you would have been ready at one to two years? Or do you think you would have been open to that?
Faith Wilcox 16:30
I don’t think I would have had the confidence to say that, that some something’s going to work, something’s going to make me better. I always held on to some hope. But it was. Yes, if someone had come to me one to two years out, I would have said, you know, thank you for trying, but I don’t think it’s going to work with me.
Victoria Volk 16:52
So let’s unpack that a little bit. Because I really think that this will be helpful, not only for me to learn how to speak about grief recovery, but also for listeners, because I can’t imagine that pain of losing a child. First of all, I can’t I don’t even know what that’s like, and I’m not going to pretend like I know what that’s like, Is it because you feel like the depth of your pain, like just nothing can possibly just pull me out of this? Do you think that’s what it is?
Faith Wilcox 17:22
That’s a good way of saying the depth of my pain, it felt that. Like, a few limbs were taken off of me. It’s amazing to know, but there’s no word for a woman who’s lost a child or for a parent who’s lost a child. We have widow and we have widower, but it’s almost as though there’s no way to sum things up into one word. And really, our children are, are braided into us, we can’t pulling that out. It’s like pulling two sides of a braid at the same time. It’s very, very, very hard to do. So I think I was living my pain and literally having a lot of physical pain at the same time, too. I understand now that that how much pain I was in emotional pain and physical pain can go hand in hand. I didn’t understand it at the time. But I think that’s primarily why I couldn’t I couldn’t don’t think I could have managed early on.
Victoria Volk 18:32
No, that’s fair enough. I mean, I’m, it’s like the suffering is overwhelming. And as I’ve been talking about recently about suffering, it’s I had an interview not that long ago, and I was talking about suffering and what I shared was your suffering anyway. What if you can suffer and put one foot in front of the other? And I feel like that’s maybe the best message I can give others right now who feel like they’re in this. Like, they’re just white knuckling hope and feel like just nothing. Nothing can take any of that pain away.
Faith Wilcox 19:27
They do like that concept that you’re in pain anyway. So why not? Why not try? Why not put one foot try to put one foot in front of the other? In a way you could say you don’t have anything to lose. Because you If anything, even if you got a whisper of relief, it would be a big help.
Victoria Volk 19:48
Right? Yeah, I wish I would have known you back then.
Faith Wilcox 19:56
Yeah, that would have been special too.
Victoria Volk 19:59
You know grief recovery has been around for over 40 years. Can you believe that? I can’t believe that like it’s, but it’s only recently in the last I suppose, six, seven years maybe that it’s kind of online and it’s gaining gaining more traction. Because before that was pretty much just word of mouth. But I just think of all the Grievers out there who, like you, just just not that you didn’t have hope, because you did, and your daughter taught you that right to never lose hope. And if we don’t have hope, what do we have? So I hope and move your feet. Right?
Faith Wilcox 20:42
That’s a good, that’s a good visualization for me.
Victoria Volk 20:49
So share with us, if you will about the writing, because you’re writing just for your own therapeutic. Write for just for yourself, and then it kind of then evolved into a book or?
Faith Wilcox 21:03
Yes, that’s exactly what happened. I started writing by my daughter’s bedside. She you know, you spend a tremendous amount of time in the hospital, and some time my daughter would be sleeping, or sometime it would be nighttime. Or sometimes our days and nights were so confused, I would write by day I write by night. And I felt that it helped me enormously express things that I kept bottled up inside, there are some things I just didn’t want to say aloud. But I could express them in writing. And I really found that I could write about many of my fears, I could write about my anxieties, I could write about how I was feeling or coping, I could write about how Elizabeth was feeling or coping, I could write about the positive things that came out the friendships that we had the family that supported us tremendously, the medical community, which was enormously strong and supportive, and very, very knowledgeable. And what happened over time, is I also wrote about the process that we’re going through, because there’s so many medical terms, there’s so much information that you don’t understand at the time. And even if you can write it down, just write down the name of the illness or write down the name of the procedures, then you can go back at a different time and say to your doctor, Okay, I understand that this is about to happen. But I don’t really understand why or I don’t really understand what this procedure entails. So just writing it down can help you kind of organize in your thoughts, rather than just be this flood of information. Your your brain can’t sort out that much information that quickly. It’s just impossible, especially in medicine, which is can be sort of like a foreign language. So it helped me ultimately it helped me process what Elizabeth went through, and understand it better. And in time, I would be able to remember through my writings, the good days, the good moments, and it helped me to remember them as I went back and I read them again. And as I started rereading my journals, I said to myself, there is a story here, there is a story of a loving, and brave young person who contributed so much to the world. And there’s a story of a mother standing by her child and doing the best that she can, given the circumstances that she’s in. And there is a story of grieving, and there’s a story of healing. And I thought, if I put my, if I put a memoir together, I hope that one day it’ll help people who are in this process of grieving and give them hope for healing.
Victoria Volk 24:03
About that, and I will actually put the information in the show notes for the book. So let me ask you this, because I recently, as I mentioned, just went through an end of life. doula training, which is a person who sits with someone guides them in hospice care, like helps is kind of the advocate and the bridge between the hospice care team and the patient and the family. And so was hospice. Never a topic of conversation. That’s me being curious again.
Faith Wilcox 24:38
Hospice was a topic of conversation. And my daughter resisted it for a little while we had she had finished her treatments. We very sadly knew what was ahead of us. And Elizabeth at maybe three weeks before she died, said sort of whispered to me that She was ready for hospice care. So hospice workers would come to our house about two times a week. And they would make sure that her pain medications were adequate. And they’d talk to her and make sure she’s comfortable. But it really was at the very end of her life, the very last day that hospice was enormously helpful. They would quietly come and go out of her room. And they just they’re calm presence was very, very helpful to us. And toward the end of their life, they gave her mom, they gave her oral morphine. Because her, her breathing was just slowing down enormously. So hospice was very helpful to us.
Victoria Volk 25:50
Did she ever speak have conversations with people that had passed before family members or anything? Again? This is me being curious.
Faith Wilcox 26:00
Do you mean did she connect with someone who had already died?
Victoria Volk 26:03
Yeah, like in her would talk about anything like she did.
Faith Wilcox 26:08
One day she said to me, Mommy, I saw George. And George was a friend who was our age who died in his early 50s. And George and his wife, were unable to have children and say, they didn’t literally adopt, but they almost adopted my two daughters, because they just adore them. And we had many, many happy days, having lunches together or going swimming together or hiking together with George and his wife. And when she said, Mommy, I saw George, I was floored. Really, really floored.
Victoria Volk 26:45
Was that your first ever experience with something like that?
Faith Wilcox 26:48
Yes, it was.
Victoria Volk 26:51
Did. I’m curious too. Did that bring you comfort?
Faith Wilcox 26:55
It did. It did. I thought. And George had a tremendous sense of humor. So I thought, well, if someone can, can bring her gently to the next place, who would be a wonderful person.
Victoria Volk 27:09
Just yesterday, March 31 episode came out on my podcast, and it was with Dr. Chris Kerr, who has been researching end of life experiences. And phenomenal episode, if you have not listened to it, it will. But it talks he talks a lot about the medicalization of end of life. And just in talking with him, and through the end of life, death doula training I had, it’s really changed my perspective on end of life and how it can be truly a beautiful, life affirming experience that can bring you much closer to your loved one than you thought was possible. Yeah, so I just wanted to share that episode with you if you haven’t listened. What would you like to screen to the world? In the past or recently in wish people knew about your grief?
Faith Wilcox 28:15
That grief goes on for a long time. And that there are days especially early on that people would get, I could tell uncomfortable being around me. And I would want to say to them, it depended if a how well I knew them. Just talk to me. Talk to me about Elizabeth. Talk to me about Olivia. Don’t pretend she didn’t exist. Don’t pretend that we just didn’t go through this huge ordeal. Because talking about Elizabeth would bring her back to me. And we could remember Yes, difficult times. We could also remember that happier times. Like let’s say when someone’s daughter was in third grade with my daughter and they used to play or have overnights remember her Don’t, don’t get so awkward around me that you can’t speak of her.
Victoria Volk 29:09
It’s almost like that indifference. And the silence is even more painful than saying the wrong thing. Made exactly you know. And like you said, Let this be a lesson to you listening. anyone listening. just acknowledge the person share a memory of them if you don’t know what to say, share your favorite memory of that person or what they brought to your life right when that have been just brought you so much peace just to know how she touched each person that you talk to right?
Faith Wilcox 29:46
Absolutely. Because then not only do you go back in time and remember much happier times, you know that your child is living on through memories and someone who she touched in her life. And that’s, that’s a blessing.
Victoria Volk 30:05
I want to share this too because this brought to light something I touched on before in different episodes, but I think it’s important to bring up again and that as a supporter of a griever or someone who like a acquaintance or a friend that you know, you meet on the street who you know, lost somebody close to them, like a child, in your case, follow the lead of the griever right? So if you’re sharing a story, reciprocate that if the person if the griever like yourself if you’re feeling like you know, it’s not like you got to look at body language to I think, you know, if you’re, if you’re kind of closed off and you’re not, like opening up or not really talkative Well, maybe it’s maybe it’s not, you know, because I think people get afraid then to upset you as a griever. He like they’re afraid to upset you. And so, but I think it’s just follow the lead of the graver. And I don’t know that any graver would be upset about a happy memory? You know, I don’t know.
Faith Wilcox 31:14
No, I can’t imagine that. I think I think everyone would be happy to remember to remember something in their past. And as I say, remember how your child touch someone’s life,
Victoria Volk 31:24
Or to learn of a certain event or a certain thing that they said or a specific, like something specific that you wouldn’t know otherwise? You know? Yeah, I just think sometimes we just fear just keeps us so closed off to connecting with, with ourselves and with gravers that, you know, we meet or Grievers that we know or what have you. So what brings you the most joy these days?
Faith Wilcox 31:59
What brings me the most joy is being with family in my new marriage. I also have grandchildren, and they bring me a tremendous amount of joy. I love I love being with children. I love watching their silly antics. I love watching how they grow, and they learn and they’ve learned about life and see their bonds growing with their family and their friends. And how they sometimes start to step out into the world. And then come come back and and ask for advice. So I, my grandchildren bring me huge amount of happiness. And I also love to spend time with my daughter, Olivia, I love to walk in the woods, or walk by the sea. Just spend time in nature is very, very comforting and reassuring to me, I also love to garden, read and write.
Victoria Volk 32:59
That’s beautiful. Find What brings you joy, right? do more of that.
Faith Wilcox 33:04
Absolutely.
Victoria Volk 33:06
Is there anything else you would like to share?
Faith Wilcox 33:11
I think to be gentle with yourself. There are times that you could say to yourself, Oh, come on. Now I’ve got to be able to be ready to go out to dinner with friends. Or maybe I want to go to an event. Go watch a baseball game. Or sometimes you have an invitation and you think, okay, maybe now I’m ready. And then you hesitate and don’t go, it’s fine. Just be very gentle with yourself. If you’re not feeling up to accepting an invitation, it’s fine. Do what works well for you don’t push yourself into any situation that feels potentially uncomfortable. And your friends will understand. They will they might take them a little while to begin to understand but they will. And you can have good conversations with them about it. And through opening up the conversations they will they will begin to glean a little bit about what it’s like to suffer as I was suffering. And then once you feel a little more confident do that stepping out into the world. And no, no, ultimately it’s going to be okay is going to be very different than what you imagined. But life is good. And there are many ways that you can find joy in this world.
Victoria Volk 34:36
Yes, I believe that too. And you made a very good point in that you kind of coach people how to be with you. You know you kind of have to you might have to be the one as a graver to open up that dialogue in that conversation and to share what you need and to share how others can support you. I will add As a supporter of a graver, don’t stop asking, right? Don’t stop asking, Hey, do you want to go catch a movie? Just don’t stop asking. Even if it’s no 20 times. Maybe it’s the 21st time. You feel like you know what? Yeah, let’s go. But let’s just go Yeah, let’s just go I got this. Let’s go today, or go for a walk and you don’t have to talk. Right? Or you can just have someone walk with you.
Faith Wilcox 35:30
Yeah, absolutely. Just have someone be by your side.
Victoria Volk 35:35
Yeah, we overcomplicate stuff a lot.
Faith Wilcox 35:39
That’s true.
Victoria Volk 35:40
Yeah. Thank you so much for sharing your story. Is there anything else?
Faith Wilcox 35:47
No, I think I think I’ve shared what I was hoping to share. And I just, I thank you for this opportunity. And what people who are grieving to really hold on to hope is in time. And with counseling and with help, it will be okay.
Victoria Volk 36:03
Yes, with community we don’t, we don’t heal on an island by ourselves. And oftentimes, that’s what grief makes us feel like and that’s why my, the artwork for my podcast is me with a megaphone on an island, right? Because that’s how we feel when we’re deep in grief. It’s like, no one’s listening to me. And I feel alone and isolated. And that’s what we do. That’s what happens. Because, you know, we don’t know what we need, necessarily all the time. And other people are afraid to make us feel worse, or they do say the wrong thing. And that makes us feel worse, or you know, so it’s such a difficult thing to navigate. And that’s why I started this podcast to bring people on, who have been there, done that, and bring hope, because without it, what do we got, you know, so thank you for sharing your story.
Faith Wilcox 37:00
Of course. Thank you so much for this opportunity.
Victoria Volk 37:03
Where can people find you if they like to reach out to you?
Faith Wilcox 37:07
Sure, you can find me at faithwilcoxnarratives.com. I have a website there, I have a way to contact me or otherwise just simply at my email at faithwilcoxnarratives.com.
Victoria Volk 37:24
Alright, and I will put that information in the show notes. And remember, when you unleash your heart, you unleash your life. Much love.