A Parent’s Tale of Grief, Special Needs and the Healing Power of Writing

Join us in this episode as our host Michael Liben opens up about the complexities of explaining death to his children and welcomes the insights of James Robinson who did likewise with his little ones. Together, they'll explore James' son Nadav's impactful life, marked by a congenital heart defect, and the unwavering spirit it revealed. His story, though filled with vulnerability, is a testament to the remarkable endurance of love and the human soul.

Parenting children with special medical needs is unique, often requiring parents to balance transparency with the preservation of childhood innocence. In this heartfelt exchange, between bereaved fathers Michael and James, they recount the promises made to their children to be forthright in the face of life-altering medical conditions. Discover how their children surprised them with their remarkable adaptability, and how the definition of 'normal' was reshaped within the walls of a home where love and medical care were intertwined.

They conclude this episode by traversing the path of healing that unfolds in the wake of profound loss. James shares his family's transformative road trip across America, an exploration of grief and remembrance following Nadav's passing. This moving experience culminates in the creation of "More Than We Expected: Five Years with a Remarkable Child," a memoir by James that seeks to offer comfort and connection to those on similar journeys. Through these stories, we honor the legacies of our loved ones and the infinite capacity of the human heart to heal and embrace resilience.

To Order James' book, use this link: https://www.amazon.com/More-Than-We-Expected-Remarkable/dp/1637588224

Or you can visit his website here: https://morethanamemoir.com/

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Transcript

James Robinson: 0:00

By the end when he actually died, I had gotten to a point where I was able to tell his brothers that he had died. And the reason was because as a father you feel a real obligation to explain the world to your children like the truth of the world, but also explain it. And I realized that death was something that I could not explain. And so I didn't try to explain it, I just told them the truth as best I could.

Michael Liben: 0:32

Welcome friends to the Eighth Season of"Bereaved But Still Me". Our purpose is to empower members of our community. I am Michael Liben and the father of three children - Idan, Sapir, and Liel. Liel, my youngest daughter, was born with a heart defect, and later developed autism and epilepsy. Losing her at 15 is what has brought me here to be the host of this program. Our guest tonight is James Robinson, James Robinson is married to Tali and is the father of three sons, Gilad, Yaniv, and Nadav, all of the names which I absolutely adore. In 2017, his article "Road to Recovery" was featured on the front page of The Times' Sunday Travel section, describing a road trip his family took after the death of his five year old son, Nadav. The piece was translated into two languages, received scores of appreciative comments, and was selected as a Notable Essay, and The Best American Travel Writing 2018. The overwhelming response to the article inspired James to write his book, "More Than We Expected- Five Years with a Remarkable Child", detailing the many gifts of this son's brief but remarkable life and finding strength in the most unexpected places. James, thank you so much for joining us today on"Bereaved But Still Me" and let's start with telling us about Nadav.

James Robinson: 1:48

his brothers Gilad and Yaniv, and he was born 12 years ago with a very serious congenital heart defect, a single ventricle. And he was a remarkable child, which is the reason that I use that as the title of my book, His condition was exceedingly rare, he needed three surgeries by the age of four. But he had a real remarkable spirit that I think inspired everybody he met. And his life taught me really profound things about what it means to be human. You know, people often talk about heart conditions in very light hearted tones, like it's something to be ashamed of some sort of tragedy. Quite the contrary, in our case, Nadav's condition really opened my eyes to something thst was our thing, one of the reasons I wrote the book, and made me reconsider how we view the world in a way that I think any parent understands. But especially people with children in complicated situations, you're forced to really confront some things that you don't confront every day, both good and bad. As I said, it was real.

Michael Liben: 2:48

What are some of the things that you might confront, I mean, I've been there, but maybe some of our listeners don't know.

James Robinson: 2:53

Nadav was diagnosed in utero, before he was born, we knew that it might be complicated, and we knew that there was a possibility that he wouldn't make it, the medical plan was to try to get him to teenage years where he would be a candidate for a heart transplant. But I knew when he was born, that there would be a chance that I would have to tell his brothers that he had died. And that's a real terrifying thing as a father to have to deal with. At the same time, the reality of his condition really, as I mentioned, opened my eyes to a lot of the world's wonders. The reason that his body formed, the way it did is because when he was a tiny embryo, these little tiny hairs on the outside of the embryo didn't beat right and caused a defect in the span of about three hours. And it really makes you sort of wonder, in the fact that anything works right, that our bodies formed the way that they do. And throughout his life, his body was thrown a lot of medical challenges, he was really, really resilient. And the amazing ways in which the body grows and heals is really quite profound. And to watch it in action, when a child, three or four years old is recovering from from real medical challenges is really inspiring. On top of that, he just had an amazing personality. He was a real charmer, he was an old soul. He was really involved in his medical condition. But he also was sort of a really, really wise kid and we were privileged too.

Michael Liben: 4:12

I think that sometimes, or maybe often, goes hand in hand, the special kids with the special hearts, they also have special souls that are wonderfully interesting people, did you find that?

James Robinson: 4:25

All three of our sons are remarkable in their own way, they all have their own personality.

Michael Liben: 4:29

I didn't mean to take anything away.

James Robinson: 4:31

But you know, we had a lot of medical experiences, you know, Nadav endured, a lot of really terrible things, the ways in which they had to operate on dysregulation that sort of rewired him so that they worked in a way that the rest of us take for granted. And through it all he was very strong and very stoic and he was also very involved. I remember when we were in the hospital, our journey, as you know, come to the world. We live in New York, but his home hospital was here in New York, we got stranded on a trip to Australia and spent three months in a hospital in Australia, we then had an innovative procedure at a hospital in Philadelphia and spent six months there. And throughout it all, Nadav, even though he was just four was really involved in his care, like doctors and look at his X ray and, and he would sit there and look at it too. And, and as people tried to talk down to him with, you know, baby terms, he would correct them, he'd use the medical term. So, you know, I think he was a, you know, I've never quite sure of how aware he was about his medical condition. But, but I suspect from what we observed that he was actually maybe the wisest one of all of us. And in fact, his body did most of the healing. You know, one of the things that surprised me about being in this situation was like, so you imagine the doctors' role was to heal people. Right? That's a doctor's role and you see, got the doctors who can heal your child. And we actually learned a lot from the doctors who took care of him because they viewed their role not as to heal him. But they had a much humbler view that the only person who could heal was Nadav himself, that's what the body does is it heals. And their role was to give it the best opportunity to do that. And time and time again, we saw these amazing things happening in his body, the veins in his body, rewiring themselves to account for an unnatural circulation to the point where he, you know, he was able to walk out of the hospital when nobody knew didn't quite knew how his circulation worked. It's really kind of inspiring. So he had kind of this, this explicit understanding of what was going on but he also had sort of this inner wisdom about how to live. And I think that that's something that we often take for granted, when we heal, or when we grow, that it just happens. But there is some like innate force, which is really quite amazing to see in action. And when things go wrong, you see that in it's most vivid way.

Michael Liben: 6:40

Well, you know, that's the funny thing. Because I, I've often said this about my own children. And we also had great difficulty in having our children. When you think about everything that has to go exactly right, that anybody is ever born, or well, is nothing short of miraculous.

James Robinson: 6:57

I'll tell you a moment when we found ourselves trying to recover from a family trip horribly wrong. In Australia, he wound up having emergency surgery and planning consultant critical care. And I remember those first few nights when the doctors came to us with some pretty grave news. There was one night where we were called in for a family meeting. And as you know, having experienced this, like a family meeting is never good. And you're surrounded by doctors, and there's nurses, there's all sorts of people there. And then it's you and your wife sitting on a couch staring at the mass of people. And the lead doctor looked at us and said,"I just have to tell you straight out that Nadav is not doing well. He's got a high white blood cell count. And he's running a fever. And there's three things that could happen tonight, there's three scenarios. One is that he could get better. And that's not going to happen. Second thing that can happen is he could hold steady, and that's what we're hoping for. And then the third thing that could happen is it he could deteriorate and if that happens, there's nothing more we can do for him". And I was shattered into a million pieces. But my remarkable wife, Tali, sat there staring him right in the eye and said, "So what you're saying is that it's up to him" - talking about Nadav. And the doctor gave her a look and said, "Yeah, I suppose you're right", and then she said,"Well, I could live with that, because I trust him". That was a sort of faith that I had never really considered before. You know, you think externally for faith, a lot of the times that you think about your deity or some spiritual answer to the world. But, you know, that was a faith in our humanity, and our innate ability to live. And I found that to be, you know, really profound.

Michael Liben: 8:34

Well I remember, one of my mother's heart attacks, she's had I think, now three. And this was years and years ago, and they told us to prepare for the worst that she wasn't gonna come out of this. And I just looked at my siblings. And I said, "Mom, will know what to do". And she came back.

James Robinson: 8:50

And that was one of the hardest things about about being his parent is I knew from the moment he was born that someday I might have to say goodbye to him. And I might have to tell, I might have to tell his brothers and that day did

Michael Liben: 9:01

That leads me into the next question that come. we've learned here over the years about anticipatory grief. And when you learned about Nadav's condition, you're suddenly thrown into the anticipatory grief mode. But also, I would consider that the flip side of anticipatory grief is hope. We have the one side of the possible bad news. And we cling on the other side to the good news. Right. So talk a little bit about that about the difference between hope and the ultimate bad news.

James Robinson: 9:26

Hope was always a tricky thing for me. I hadn't, I think I mentioned the word once in my book. At the time that I mentioned it is when we were sitting in a family meeting, where we were told flat out that Nadav would not make it. And it turns out that they were wrong in that circumstance. They were right in the long term, but they were wrong in the short term. But we just heard this terrible news from this doctor we really respected because he told us the truth. And at the end of the meeting, other doctor raised their hand and said, "You know, you shouldn't give up hope". And I looked at her and I said, "How could you say such a thing? You've just told me that our son is going to die? How am supposed to not give up hope?' It was sort of a meaningless statement. And it was only much later when I found out that's what doctors are trained to do is, is trying to not extinguish families' hope, apparently in med school, medical school this is something that they talked about a lot. I talked to this doctor who broke the news, not the one who said anything about hope, the one who sat us down, I said, you know,"How do you do that in perspective?" And he said,"Actually, you know, what I tried to train my doctors is to not give false hope. So you could hope that his last days is will be comfortable and peaceful and whatever, but but false hope would be, "Hey, maybe he'll pull through, maybe things will magically turn around, and maybe that will happen, we still see miracles, but it's sort of to plant that seed in an unrealistic way, is a disservice to the parent". The other thing that he said was, he said,"Don't give false hope, be honest and direct" and he said,"Get the sex of the child right". And I thought that was interesting, too, is one of his top three things. And it's true, because if you don't care enough about the child of the family to know what gender they are, you know, that's kind of an insulting thing and that's going to drive a wedge between you. So I don't know if hope was really what I what I felt, I think what I come to realize in the course of his life, is that there are some things that I will never understand. And that's what makes me human, that's what makes us human, there's a limit to what we can know, both good and bad. I don't know why we die. I don't know how that's determined. I've always been afraid of it, but I've come to accept it. And at the same time, I don't know why life is so magical, why the body knows to heal itself or grow. That's something that's, that's wonderful that I don't know about. But I think by the end, when he actually died, I had gotten to a point where I was able to tell his brothers that he had died. And the reason was, because as a father, you feel a real obligation to explain the world to your children, like the truths of the world, but also explaining. And I realized that death was something that I could not explain. And so I tried to explain it, I just told them the truth as best I could. And I was able to do that. And I think that's what I took out of this experience is sort of an acceptance that we are at the mercy of things that we will never understand. And that's what makes us human. And that's both a terrifying and beautiful thing. And that's just how it is.

Disclaimer: 12:10

You're listening to"Bereaved But Still Me". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liven,at michael@bereavedbutstillme.com. That's michael@bereavedbutstillme.com. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Michael Liben: 12:50

James, we both had children with very complicated hearts that required multiple open heart surgeries. And for us, this means that we're given bad news that they need open heart surgery, and then the good news when they survive. And that happens over and over and over again. And this creates a kind of compound grief.

James Robinson: 13:06

We were in the situation of knowing that Nadav was born that he would need at least three surgeries. The plan was to make sure that you can reorient circulation using surgeries in five days, five months and then around four years old, which would hopefully help them survive till teenage years when he would be a candidate for a heart transplant. So we kind of knew the routine in advance. And that's not to say we didn't have setbacks and unexpected things. But we made a promise to his older brother early on that we would be as candid with him as possible about what was happening, even though he was only four years old. That actually came from a promise that we made to him when he was old enough to listen, when we said, "We will do our best to be honest with you about things that are happening, because we think you can handle it. And, in return, we expect you to be honest with us about things that are troubling you". We'd rather have him come to us with a be able to talk to us about something frustrating or difficult and know that we would not get angry. So we made a promise that we won't get angry if you tell us the truth. And I think many people think it's a lot for a child to absorb and understand that your your brother is born with a heart defect that he is going to need surgeries that he might die. But we always felt that kids deserve to know the truth. And over the course of Nadav's life, we learned how super strong and resilient kids are and how they are able to cope with some truths more than adults are. And I do think they really deserve the respect of of honesty and candor. You don't have to go into every single little detail. But I think being honest about the things that matter, it's really important when dealing with children.

Michael Liben: 14:29

I totally agree with that. My daughter got a pacemaker when she was about two. And we went through a routine because she was nonverbal, we went through a routine, "The heart goes -" and she'd say, "boom, boom, boom". And I'd say, "The pacemaker goes-" and she'd say, "tick, tick tick," because like a little computer account, like a little clock inside your body. One day I asked her, I said, "Does everybody have a pacemaker?" And she said, "Yeah" and I said,"No, actually, it's just you". And I think that scared her because I think for the first time she realized, maybe not every kid goes through heart surgery as many times as she had. But we did try to be as candid as possible.

James Robinson: 15:06

One of the things that's remarkable about other children dealing with it is they do face this stuff very differently than adults do. You know, there was a time when Nadav needed nasal cannula, extra oxygen that came from a tank that we carried around on our back and it added extra oxygen. And adults, when they look at that they're terrified. Because if a child needs oxygen it must mean something is terribly, and they kind of freak out a little bit. And kids, when they look at it, the dots appear when they looked at it, once you explain it to them, that he needs extra oxygen to breathe, and to live, and this is gives him the extra oxygen he needs. Kids are really at peace with that, like they look at that as a really good thing. Wow, he's got the oxygen needs. That's great that he has that.

Michael Liben: 15:46

I thought you're gonna go different with that. I thought they were going to say,"Oh, cool. Can I have one too?

James Robinson: 15:50

No, I don't think they go that far. But but they accept it in a way that I think adults can really learn from. There is this awkwardness around adults that is often not present with children. Now, that's not to say that kids don't tease each other, so maybe it's a function of being 5 and not 15. Yeah, and I know there's I know, there's a lot of awkwardness or a difference that we didn't experience, thankfully, but I think not to be condescending to children about what they can handle is super important, because we have a lot to learn.

Michael Liben: 16:14

I totally agree with that. I think kids really are smarter than we give them credit for. And they have a need to understand their world with a certain order. And the more you can give them the more order they can have.

James Robinson: 16:26

Right.

Michael Liben: 16:27

One of the challenging parts of being a parent of a child with special needs is that you can never go back to the way things were before you have that child, you have a new normal. So tell us about how normal change for you.

James Robinson: 16:39

It's funny, we had to cope with not only all the medical stuff, the surgeries, the needs, but we also had to create a normal life for our children. Throughout all this, and the medical needs were considerable, not just the hospital visits, but when Nadav came home after his first surgery, we had to worry about how to feed him to make sure that he was able to grow like other kids, right, that was a huge challenge. We had to learn how to monitor his oxygen saturations in his blood which was frustrating because there was little sensor that went around his toe that kept on falling off. My secret talent is being able to place an NG tube, a nasogastric tube. And he needed it because kids with cardiac issues, as you know, have challenges growing sometimes. And so he needed supplemental feeds at night. And so we had to put this NG tube in and it often came out. When we came home, the nurses had to teach us before we left the hospital how to place the NG tube, which was probably the most terrifying thing I've ever done in my life, to stick this bright yellow tube down your son's nose. And I'm sorry if your listeners are squeamish, but it now you're feeling a little bit of what I felt when I was told I had to do it. And I learned, I learned how to do it so well this is now my secret talent is being able to put an NG tube in a sleeping baby in the middle of the night without them waking up.

Michael Liben: 17:48

Is there an author in the house? Who can place an NG tube? Hello? Why, yes!

James Robinson: 17:53

Yeah, well, we laugh about it. But you know,

Michael Liben: 17:54

Absolutely.

James Robinson: 17:54

And being able to be, to be the person who is like, the reason I laugh about it, wistfully almost, is because these are skills that they gave me a certain amount of pride able to take care of your child that knows what they need. And actually having mastered them - is sort of the expert in all this stuff, you know, I have certain things I picked up I know how to get stuff done in hospitals, right? Like, if you need an echo, I could probably talk to the right people and make sure that happened today instead of tomorrow, for example. Yeah. And that becomes part of your identity. And it makes you very proud as a parent to be able to do these things. And unfortunately, one of the big griefs that you feel when you lose a child like this is suddenly these skills are rendered useless and irrelevant. It's like losing a limb. Almost.

Michael Liben: 18:35

Yeah, but it's not like you wish you had another child with the same problem so that you could keep doing it? I mean, no, of course, there's, there is, I think, a certain relief that I know these things, but thank God, I don't have to do them anymore.

James Robinson: 18:46

I don't know if I share that because, you know, honestly, I wish I was still caring for him, obviously, but -

Michael Liben: 18:51

Well, I understand that. But they're what I meant, I think, let me maybe I should rephrase it. There's a there's a certain release for the child and there's a certain relief for you that you don't have to live on that edge all the time anymore.

James Robinson: 19:06

Yeah, I mean, you become used to it. I mean, you really do. I mean, you had and I think I wrote about this my book about the relationship I had my wife, a lot of it was centered around his care. That was a really foundational thing in our relationship, right? And then you avoid gaining what you lose. And everybody grieves differently, even people who've been through exactly the same thing you have, is processing grief and dealing with it. And so yeah, I guess it's a relief to not have to deal with it. But you know, it's a tremendous loss. And I think in my my experience that completely overshadows any sort of relief,

Michael Liben: 19:39

I miss her. But my memories of her now are much more easygoing, because they don't have on top of that, that layer of what do I have to do next? When's the next appointment? Where do we have to be? What do we have to do? I can be at home with the memories of my daughter now and enjoy them in a way that I couldn't enjoy being on that edge. That may only be and I certainly don't wish to belittle anybody who feels differently, who's had a loss.

James Robinson: 20:07

Honestly, to separate out his life from his medical needs, right? They were part and parcel of who he was. So it's hard for me to imagine him without his life without that aspect of it. And that's part of what I miss, honestly, is that dynamic, because that's part of who he was.

Michael Liben: 20:23

In the ancient days of the Internet, when we had these things called Listservs, where you could write an email to a group, and they would all get it and then you will be flooded with responses and answers. Somebody asked the question, "If I could wave a magic wand over your child, and completely cure him, would you do it?" And think about your answer, because a lot of people said, "No, I wouldn't. Because it defines my child, it wouldn't be the child I raised". A lot of people said, "It would change me, my child defines who I am. If you take away all the care and all the work that we've put in, you've taken away everything". Do you have thoughts on that?

James Robinson: 21:05

Yeah, I have an easy answer for that, I would change anything, except probably the end. But even that was part of what his life was, his life was what it was. He was if he had been born differently, he wouldn't have been him. And we wouldn't have been us. And I think that's part of what the acceptance that I talked about earlier, it's all about is understanding that, that as humans, these are things that happen to us. And these are challenges that we all face some earlier, some later, that's a part of what makes us human. And I accept that. I've come to accept that.

Michael Liben: 21:36

We did a program, a couple of programs actually on faith. I'm not going to go there here. But one of the things that we talked about was what you're talking about, I believe, is acceptance as kind of faith that I believe things tend to work out the way they should whether I like it or not. Does that-

James Robinson: 21:54

If I could change one word in that sentence it's "should" I don't know about"should". They turn out the way they do. I don't know if there's a "should" in there. But - Yeah. Yeah.

Michael Liben: 22:03

Interesting. Interesting. I can accept that change, things turn out the way they do. Whether I like it or not, things turn out the way things go.

James Robinson: 22:13

Yeah, there were a million choices that we made in this life, and some big and some small. There was one really big choice that I'm not sure I want to talk about yet, but it's very easy to have regret about the choices you make. And I don't know I have enough faith in me and my wife's ability to, at any given moment, be as informed as possible about the implications knowing that there are risks of things happening, to make the right decisions. And if they don't turn out the way that you want them to turn out, that's not your fault. That's just the way life is sometimes. We dealt with some pretty dramatic consequences to to our decisions. We got stranded in a foreign country halfway around the world, right? But I don't regret that decision. Because the reasons that we made it, even if in retrospect, they were overshadowed by the consequences at the time, were the right reasons, you have to live in the moment not live in the past.

Michael Liben: 23:00

If you've enjoyed listening to this program, please visit our website, heartsunitetheglobe.org and make a contribution. This program is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at congenitalheartdefects.com for information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more. So the dominoes began to fall during a visit to Australia, what led to Nadav's passing?

James Robinson: 23:45

We knew that Nadav would need three surgeries, those first three surgeries were planned, they all went relatively well. They weren't run of the mill surgeries, they were heart surgeries, so they're pretty significant. And the third one went a little pear shaped at the end and kind of worried for a while there but he pulled through it was pretty pretty well. It was on a family trip to Australia that we decided to take that he developed a blood clot in his circulation. And that required emergency surgery halfway around the world and in an unfamiliar country. Although my mother's from Australia, and there are a lot of family, we found ourselves stranded in this hospital far from home. And his recovery was not assured. The surgery was 14 hours, 10 hours of bypass. It was an emergency surgery, he came out with something called ECMO, which was pretty dire. And he spent three months in intensive care in Sydney before my wife discovered a reason to bring him back to the states which was a doctor in Philadelphia who was doing an innovative procedure that was pretty much one of the only things that could have helped Nadav at that point, he was not a candidate for another surgery. So we arranged this crazy medical evacuation where a doctor, three amazing nurses on the medical team came down on a Gulfstream 3 from Philadelphia, making stops in Oakland, Hawaii, and Fiji, Sydney, Australia, arriving in the blue jumpsuits with "CHOP Transport" on the back and American flags on the sleeve. And, and brought him back to the state, which itself was a risky procedure - they never transport anybody that far that sick. So it was pretty, pretty groundbreaking. And he arrived at Philadelphia. And as soon as we arrived, he underwent this procedure, which allowed us to hope for recovery and not just stability, which is really a blessing. He ended up spending six months in Philadelphia, he learned to walk again, he learned to write again, he learned to speak again, he got back on his feet and recuperated for six months. And we found ourselves having to, we live in New York, not Philadelphia. So the boys were back home in New York, we split our time between the places. And it was really a miracle that we were able to get home at all six months after we got to Philadelphia finally had a procedure that worked, that allowed him to go home. And even then though we knew that things would be difficult, but we've been told that he wasn't going to make it without a transplant and he wasn't really a candidate for transplant. He needed a heart lung transplant and, but he was in pretty bad shape. So even though we tried our best to find the medical solution to it, we kind of knew in the back of our minds, the day might come that he would he would pass away. You know, we got back to New York and enrolled him in kindergarten, which was a pretty incredible thing that was pretty miraculous. So we sent him to the public school across the street from our house, which was pretty incredible, because they welcomed him in, even though, you know, he was the world champion cardiac kid with an oxygen tank and a nasal cannula. And it was there that we saw the world at its best in many ways, you know, from his teachers and his classmates. And it was really a blessing to see him sort of back home again, for real, like a normal kid. Albeit under very abnormal circumstances. But we knew that it wasn't sustainable, at the end of the day, although we tried to have medical interventions at the hospital near us. It wasn't enough and that January he died suddenly, but not expectedly. And by then I had been through so much and wrestling with the questions of our mortality and the things that we know and don't know, the world's unknown terrorrs and wonders that that I think I've learned to cope with it by then it was really devastating thing. I was at peace with his life, as it was. And I consider that to be a blessing.

Michael Liben: 27:23

We talked about hope a little bit earlier, I think sending him to public school with oxygen tank is, um, if that's not hope, I don't know what hope is. I just think that's -

James Robinson: 27:33

Well, I think it was more at insistence, the hope to be implied something beyond your control. And we always try to bend the world to our will. And my wife had become very insistent that he had his normal a life as possible. He had a wheelchair at CHOP, we didn't bring it home with us. We wanted him to walk, and we sort of felt that, it, with enough persistence that we could achieve anything. And in many ways we did.

Michael Liben: 27:53

I'll accept that. I'll accept that definition. I will. I it's just remarkable. Maybe that's the word. It's remarkable.

James Robinson: 28:02

Yeah, I mean, he was a remarkable kid, but I think all kids are remarkable. And there was nothing, I think, especially remarkable about us, I think we did what any parent in this situation would do, you sort of find yourself in the circumstances, you're in and do your best to make the most of it. And the people we've met are not, I mean, they're all extraordinary people in their own way. But, but I would like to think that anybody pushed into the circumstance with, as a parent, that's what you do. You know, whether a kid is healthy or sick, you do the best you can to be, to give them a good life.

Michael Liben: 28:27

That's for sure. That's for sure. Now, you wrote an article for The New York Times called "Road to Recovery", about a trip that your family took, tell me more about that.

James Robinson: 28:35

I do work at the New York Times. And I'm not a journalist, it was actually really comforting after he died to be surrounded by a lot of remarkable people, especially Jewish people who recognize his name is a Hebrew name and reached out to help us in the aftermath of his death are really comforting. And one of the things that the company did for us is is is give us the time we need to both when he was when he was born when he was sick, and also when he died, the time that we needed to heal. And my wife and I decided that we wanted to cope with, or we decided that one of the things we wanted to do was to get out of town. Traveling was always really important to us as a family, as you might have guessed -

Michael Liben: 29:16

I have.

James Robinson: 29:16

We went to Australia with three kids, right, and we sort of we sought solace in the open roads. So we, I asked for a month off work and they gave it to me which is great. And we hopped in a car and we we did the great American road trip. We drove out to the Midwest, a place I've never been before, all the way out to South Dakota. And then back there was eclipse 2017 that we saw. We drove down to Charleston, South Carolina, back to New York, a big loop. And we decided that we didn't want to be stressed out on a trip so we we had a couple of ground rules. One of the rules was we weren't going to drive more three hours a day and then at every stop we only did one thing in any city. You know what, you know, ass tempting as it was to do more than one thing, and we stuck to it, like in Indianapolis, we went to the Speedway, right in Springfield, Illinois, went to Lincoln's home, in St. Louis went to the arch, you know, and it reduced a lot of the stress and pressure. Yeah. And we got to experience things that we had never seen. And there's something about like being on the road that I find very comforting and calming. And yet we missed him terribly. And the way we cope with that was, everywhere we were, it's a Jewish tradition that when you visit a grave site, you place a stone, a memorial. And we decided that everywhere we went, we would find a stone, and we would pick it up and put it in a bag. So everywhere we went we picked up a stone, we took a moment to remember him, we wrote down where we were in the day. And then when we got back to New York, we drove to his his grave, went to see him. And we took all the stones and there was one seashell, I think Myrtle Beach, as well. And I think there might have been a coconut, I'm not sure where the coconut came, and it means another trip. And we took the bag and we remembered all the places we've been in how much we missed him. And we were there with him too. And that was pretty special way to remember him. So The Times encouraged me to write about it, which I found very flattering, because I'm not a working journalist, although I do write from time to time. And they published the piece that I wrote about a trip and it was really well received at that led to me writing a memoir about his life, which has been published this past November, and that was extraordinary gratifying to tell our story to people who may have dealt with similar circumstances or for medical professionals caring for kids, like our son, to share our story in the hopes that it'll help them is something that I really want to do. And the response to it has been very gratifying. And best of all, it gives me permission to return to a world that I unfortunately had been cast out of, communities which I was a part of and now are somewhat irrelevant because I I no longer have a son with a medical condition, although he'll always be with us. And so having published the book allows me to have wonderful conversations with all sorts of interesting people just like I'm doing now, that's a real gift.

Michael Liben: 31:57

These communities really are tight and last forever. And I appreciate your dilemma there. I do. And that's one of the reasons that I have this podcast is to connect once again with all those people that I knew. And so many more people that I don't know or have yet to know. Before we conclude, tell us about your website and how people can find your book.

James Robinson: 32:16

The book is called "More Than We Expected - Five Years with a Remarkable Child". It's currently for sale on Amazon, major book retailers online, independent bookstores, if your local bookstore doesn't have it, just ask them and they'll get you a copy, More Than We Expected" is the title. And the website is different, it's morethanamememoir.com. But the book's title is "More Than We Expected". And if you go to the website, there's information on where to find it, and there's also something special that, that I've set up, which is if you read the book, you'll understand that oregano played a really important part of our son's life. Now, read the book, and want little packet of oregano to remember him by I'm happy to send it to you. And if you fill out the form on the website, and I'll send that out, then maybe that'll bring you a little of the joy that we felt as well.

Michael Liben: 33:02

James Robinson, thank you so much for joining us here on "Bereaved But Still Me" and for sharing your thoughts and your story. Nadav was special and we were able to hear that and feel that for you today. I trust that anybody who reads your book will feel it more to the heart. He clearly was special and remarkable in so many ways. And thank you for joining us.

James Robinson: 33:28

Thanks for having me, Michael.

Michael Liben: 33:29

That concludes this episode of "Bereaved But Still Me". I want to thank James Robinson for sharing his experience and his wisdom with us. Please join us at the beginning of the month for a brand new podcast. I'll talk with you soon but until then, please remember moving forward is not moving away.

Disclaimer: 33:43

Thank you for joining us. We hope you have felt supported in your grief journey. "Bereaved But Still Me" is a monthly podcast and a new episode is released on the first Thursday of each month. You can hear our podcast anywhere you normally listen to podcasts at any time. Join us again next month for a brand new episode of"Bereaved But Still Me".