May 2, 2024 • 34 mins
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/
Links to “Bereaved But Still Me” Social Media and Podcast Pages:
Apple Podcasts: https://podcasts.apple.com/us/podcast/bereaved-but-still-me/id1333229173
Facebook: https://www.facebook.com/HugPodcastNetwork
YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw
Website: https://www.hug-podcastnetwork.com/
Become a Patron: https://www.hug-podcastnetwork.com/patreon.html
OR
https://www.buzzsprout.com/123208/support
Links to “Bereaved But Still Me” Social Media and Podcast Pages:
Apple Podcasts: https://podcasts.apple.com/us/podcast/bereaved-but-still-me/id1333229173
Spreaker: https://www.spreaker.com/show/heart-to-heart-with-michael
Facebook: https://www.facebook.com/HugPodcastNetwork
YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw
Website: https://www.hug-podcastnetwork.com/
Become a Patron: https://www.hug-podcastnetwork.com/patreon.html
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
James Robinson (00:00):
By the end when he actually died, I had gotten
(00:02):
to a point where I was able totell his brothers that he had
died. And the reason was becauseas a father you feel a real
obligation to explain the worldto your children like the truth
of the world, but also explainit. And I realized that death
was something that I could notexplain. And so I didn't try to
explain it, I just told them thetruth as best I could.
Michael Liben (00:32):
Welcome friends to the Eighth Season of
"Bereaved But Still Me". Ourpurpose is to empower members of
our community. I am MichaelLiben and the father of three
children - Idan, Sapir, andLiel. Liel, my youngest
daughter, was born with a heartdefect, and later developed
autism and epilepsy. Losing herat 15 is what has brought me
here to be the host of thisprogram. Our guest tonight is
(00:53):
James Robinson, James Robinsonis 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 toRecovery" was featured on the
front page of The Times' SundayTravel section, describing a
road trip his family took afterthe death of his five year old
son, Nadav. The piece wastranslated into two languages,
(01:15):
received scores of appreciativecomments, and was selected as a
Notable Essay, and The BestAmerican Travel Writing 2018.
The overwhelming response to thearticle inspired James to write
his book, "More Than We Expected- Five Years with a Remarkable
Child", detailing the many giftsof this son's brief but
remarkable life and findingstrength in the most unexpected
(01:36):
places. James, thank you so muchfor joining us today on
"Bereaved But Still Me" andlet's start with telling us
about Nadav.
James Robinson (01:48):
his brothers Gilad and Yaniv, and he was born
12 years ago with a very seriouscongenital heart defect, a
single ventricle. And he was aremarkable child, which is the
reason that I use that as thetitle of my book, His condition
was exceedingly rare, he neededthree surgeries by the age of
(02:09):
four. But he had a realremarkable spirit that I think
inspired everybody he met. Andhis life taught me really
profound things about what itmeans to be human. You know,
people often talk about heartconditions in very light hearted
tones, like it's something to beashamed of some sort of tragedy.
Quite the contrary, in our case,Nadav's condition really opened
(02:29):
my eyes to something thst wasour thing, one of the reasons I
wrote the book, and made mereconsider how we view the world
in a way that I think any parentunderstands. But especially
people with children incomplicated situations, you're
forced to really confront somethings that you don't confront
every day, both good and bad.
As I said, it was real.
Michael Liben (02:48):
What are some of the things that you might
confront, I mean, I've beenthere, but maybe some of our
listeners don't know.
James Robinson (02:53):
Nadav was diagnosed in utero, before he
was born, we knew that it mightbe complicated, and we knew that
there was a possibility that hewouldn't make it, the medical
plan was to try to get him toteenage years where he would be
a candidate for a hearttransplant. But I knew when he
was born, that there would be achance that I would have to tell
his brothers that he had died.
And that's a real terrifyingthing as a father to have to
(03:15):
deal with. At the same time, thereality of his condition really,
as I mentioned, opened my eyesto 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, theselittle tiny hairs on the outside
of the embryo didn't beat rightand caused a defect in the span
of about three hours. And itreally makes you sort of wonder,
(03:36):
in the fact that anything worksright, that our bodies formed
the way that they do. Andthroughout his life, his body
was thrown a lot of medicalchallenges, he was really,
really resilient. And theamazing ways in which the body
grows and heals is really quiteprofound. And to watch it in
action, when a child, three orfour years old is recovering
from from real medicalchallenges is really inspiring.
(03:58):
On top of that, he just had anamazing personality. He was a
real charmer, he was an oldsoul. He was really involved in
his medical condition. But healso was sort of a really,
really wise kid and we wereprivileged too.
Michael Liben (04:12):
I think that sometimes, or maybe often, goes
hand in hand, the special kidswith the special hearts, they
also have special souls that arewonderfully interesting people,
did you find that?
James Robinson (04:25):
All three of our sons are remarkable in their own
way, they all have their ownpersonality.
Michael Liben (04:29):
I didn't mean to take anything away.
James Robinson (04:31):
But you know, we had a lot of medical
experiences, you know, Nadavendured, a lot of really
terrible things, the ways inwhich they had to operate on
dysregulation that sort ofrewired him so that they worked
in a way that the rest of ustake for granted. And through it
all he was very strong and verystoic and he was also very
(04:52):
involved. I remember when wewere in the hospital, our
journey, as you know, come tothe world. We live in New York,
but his home hospital was herein New York, we got stranded on
a trip to Australia and spentthree months in a hospital in
Australia, we then had aninnovative procedure at a
hospital in Philadelphia andspent six months there. And
throughout it all, Nadav, eventhough he was just four was
really involved in his care,like doctors and look at his X
(05:16):
ray and, and he would sit thereand look at it too. And, and as
people tried to talk down to himwith, you know, baby terms, he
would correct them, he'd use themedical term. So, you know, I
think he was a, you know, I'venever quite sure of how aware he
was about his medical condition.
But, but I suspect from what weobserved that he was actually
maybe the wisest one of all ofus. And in fact, his body did
(05:37):
most of the healing. You know,one of the things that surprised
me about being in this situationwas like, so you imagine the
doctors' role was to healpeople. Right? That's a doctor's
role and you see, got thedoctors who can heal your child.
And we actually learned a lotfrom the doctors who took care
of him because they viewed theirrole not as to heal him. But
they had a much humbler viewthat the only person who could
heal was Nadav himself, that'swhat the body does is it heals.
(05:59):
And their role was to give itthe best opportunity to do that.
And time and time again, we sawthese amazing things happening
in his body, the veins in hisbody, rewiring themselves to
account for an unnaturalcirculation to the point where
he, you know, he was able towalk out of the hospital when
nobody knew didn't quite knewhow his circulation worked. It's
really kind of inspiring. So hehad kind of this, this explicit
(06:20):
understanding of what was goingon but he also had sort of this
inner wisdom about how to live.
And I think that that'ssomething that we often take for
granted, when we heal, or whenwe grow, that it just happens.
But there is some like innateforce, which is really quite
amazing to see in action. Andwhen things go wrong, you see
that in it's most vivid way.
Michael Liben (06:40):
Well, you know, that's the funny thing. Because
I, I've often said this about myown children. And we also had
great difficulty in having ourchildren. When you think about
everything that has to goexactly right, that anybody is
ever born, or well, is nothingshort of miraculous.
James Robinson (06:57):
I'll tell you a moment when we found ourselves
trying to recover from a familytrip horribly wrong. In
Australia, he wound up havingemergency surgery and planning
consultant critical care. And Iremember those first few nights
when the doctors came to us withsome pretty grave news. There
was one night where we werecalled in for a family meeting.
And as you know, havingexperienced this, like a family
(07:18):
meeting is never good. Andyou're surrounded by doctors,
and there's nurses, there's allsorts of people there. And then
it's you and your wife sittingon a couch staring at the mass
of people. And the lead doctorlooked at us and said,"I just
have to tell you straight outthat Nadav is not doing well.
He's got a high white blood cellcount. And he's running a fever.
And there's three things thatcould happen tonight, there's
(07:40):
three scenarios. One is that hecould get better. And that's not
going to happen. Second thingthat can happen is he could hold
steady, and that's what we'rehoping for. And then the third
thing that could happen is it hecould deteriorate and if that
happens, there's nothing more wecan 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 whatyou're saying is that it's up to
(08:02):
him" - talking about Nadav. Andthe doctor gave her a look and
said, "Yeah, I suppose you'reright", and then she said,
"Well, I could live with that,because I trust him". That was a
sort of faith that I had neverreally considered before. You
know, you think externally forfaith, a lot of the times that
you think about your deity orsome spiritual answer to the
world. But, you know, that was afaith in our humanity, and our
(08:24):
innate ability to live. And Ifound that to be, you know,
really profound.
Michael Liben (08:34):
Well I remember, one of my mother's heart
attacks, she's had I think, nowthree. And this was years and
years ago, and they told us toprepare for the worst that she
wasn't gonna come out of this.
And I just looked at mysiblings. And I said, "Mom, will
know what to do". And she cameback.
James Robinson (08:50):
And that was one of the hardest things about
about being his parent is I knewfrom the moment he was born that
someday I might have to saygoodbye to him. And I might have
to tell, I might have to tellhis brothers and that day did
Michael Liben (09:01):
That leads me into the next question that
come.
we've learned here over theyears about anticipatory grief.
And when you learned aboutNadav's condition, you're
suddenly thrown into theanticipatory grief mode. But
also, I would consider that theflip side of anticipatory grief
is hope. We have the one side ofthe possible bad news. And we
cling on the other side to thegood news. Right. So talk a
(09:21):
little bit about that about thedifference between hope and the
ultimate bad news.
James Robinson (09:26):
Hope was always a tricky thing for me. I hadn't,
I think I mentioned the wordonce in my book. At the time
that I mentioned it is when wewere sitting in a family
meeting, where we were told flatout that Nadav would not make
it. And it turns out that theywere wrong in that circumstance.
They were right in the longterm, but they were wrong in the
short term. But we just heardthis terrible news from this
doctor we really respectedbecause he told us the truth.
(09:49):
And at the end of the meeting,other doctor raised their hand
and said, "You know, youshouldn't give up hope". And I
looked at her and I said, "Howcould you say such a thing?
You've just told me that our sonis going to die? How am supposed
to not give up hope?' It wassort of a meaningless statement.
And it was only much later whenI found out that's what doctors
are trained to do is, is tryingto not extinguish families'
hope, apparently in med school,medical school this is something
(10:11):
that they talked about a lot. Italked to this doctor who broke
the news, not the one who saidanything 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 tonot give false hope. So you
could hope that his last days iswill be comfortable and peaceful
and whatever, but but false hopewould be, "Hey, maybe he'll pull
(10:31):
through, maybe things willmagically turn around, and maybe
that will happen, we still seemiracles, but it's sort of to
plant that seed in anunrealistic way, is a disservice
to the parent". The other thingthat he said was, he said,
"Don't give false hope, behonest and direct" and he said,
"Get the sex of the childright". And I thought that was
interesting, too, is one of histop three things. And it's true,
(10:52):
because if you don't care enoughabout the child of the family to
know what gender they are, youknow, that's kind of an
insulting thing and that's goingto drive a wedge between you. So
I don't know if hope was reallywhat I what I felt, I think what
I come to realize in the courseof his life, is that there are
some things that I will neverunderstand. And that's what
makes me human, that's whatmakes us human, there's a limit
(11:15):
to what we can know, both goodand bad. I don't know why we
die. I don't know how that'sdetermined. I've always been
afraid of it, but I've come toaccept it. And at the same time,
I don't know why life is somagical, why the body knows to
heal itself or grow. That'ssomething that's, that's
wonderful that I don't knowabout. But I think by the end,
when he actually died, I hadgotten to a point where I was
(11:37):
able to tell his brothers thathe had died. And the reason was,
because as a father, you feel areal obligation to explain the
world to your children, like thetruths of the world, but also
explaining. And I realized thatdeath was something that I could
not explain. And so I tried toexplain it, I just told them the
truth as best I could. And I wasable to do that. And I think
that's what I took out of thisexperience is sort of an
(11:59):
acceptance that we are at themercy of things that we will
never understand. And that'swhat makes us human. And that's
both a terrifying and beautifulthing. 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 thatyou would like addressed on our
program, please send an email toMichael Liven,at
michael@bereavedbutstillme.com.
That'smichael@bereavedbutstillme.com.
This content is not intended tobe a substitute for professional
(12:31):
medical advice, diagnosis, ortreatment. The opinions
expressed in the podcast are notthose of Hearts Unite the Globe,
but of the hosts and guests andare intended to spark discussion
about issues pertaining tocongenital heart disease or
bereavement.
Michael Liben (12:50):
James, we both had children with very
complicated hearts that requiredmultiple open heart surgeries.
And for us, this means thatwe're given bad news that they
need open heart surgery, andthen the good news when they
survive. And that happens overand over and over again. And
this creates a kind of compoundgrief.
James Robinson (13:06):
We were in the situation of knowing that Nadav
was born that he would need atleast three surgeries. The plan
was to make sure that you canreorient circulation using
surgeries in five days, fivemonths and then around four
years old, which would hopefullyhelp them survive till teenage
years when he would be acandidate for a heart
transplant. So we kind of knewthe routine in advance. And
that's not to say we didn't havesetbacks and unexpected things.
(13:29):
But we made a promise to hisolder brother early on that we
would be as candid with him aspossible about what was
happening, even though he wasonly four years old. That
actually came from a promisethat we made to him when he was
old enough to listen, when wesaid, "We will do our best to be
honest with you about thingsthat are happening, because we
think you can handle it. And, inreturn, we expect you to be
honest with us about things thatare troubling you". We'd rather
have him come to us with a beable to talk to us about
(13:51):
something frustrating ordifficult and know that we would
not get angry. So we made apromise that we won't get angry
if you tell us the truth. And Ithink many people think it's a
lot for a child to absorb andunderstand that your your
brother is born with a heartdefect that he is going to need
surgeries that he might die. Butwe always felt that kids deserve
to know the truth. And over thecourse of Nadav's life, we
(14:12):
learned how super strong andresilient kids are and how they
are able to cope with sometruths more than adults are. And
I do think they really deservethe respect of of honesty and
candor. You don't have to gointo every single little detail.
But I think being honest aboutthe things that matter, it's
really important when dealingwith children.
Michael Liben (14:29):
I totally agree with that. My daughter got a
pacemaker when she was abouttwo. And we went through a
routine because she wasnonverbal, we went through a
routine, "The heart goes -" andshe'd say, "boom, boom, boom".
And I'd say, "The pacemaker goes-" and she'd say, "tick, tick
tick," because like a littlecomputer account, like a little
clock inside your body. One dayI asked her, I said, "Does
(14:51):
everybody have a pacemaker?" Andshe said, "Yeah" and I said,
"No, actually, it's just you".
And I think that scared herbecause I think for the first
time she realized, maybe notevery kid goes through heart
surgery as many times as shehad. 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 itis they do face this stuff very
differently than adults do. Youknow, there was a time when
Nadav needed nasal cannula,extra oxygen that came from a
tank that we carried around onour back and it added extra
oxygen. And adults, when theylook at that they're terrified.
Because if a child needs oxygenit must mean something is
terribly, and they kind of freakout a little bit. And kids, when
(15:29):
they look at it, the dots appearwhen they looked at it, once you
explain it to them, that heneeds extra oxygen to breathe,
and to live, and this is giveshim the extra oxygen he needs.
Kids are really at peace withthat, like they look at that as
a really good thing. Wow, he'sgot 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 Ithink adults can really learn
from. There is this awkwardnessaround adults that is often not
present with children. Now,that's not to say that kids
don't tease each other, so maybeit's a function of being 5 and
not 15. Yeah, and I know there'sI know, there's a lot of
awkwardness or a difference thatwe didn't experience,
thankfully, but I think not tobe condescending to children
(16:11):
about what they can handle issuper 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 themcredit for. And they have a need
to understand their world with acertain order. And the more you
can give them the more orderthey can have.
James Robinson (16:26):
Right.
Michael Liben (16:27):
One of the challenging parts of being a
parent of a child with specialneeds is that you can never go
back to the way things werebefore you have that child, you
have a new normal. So tell usabout how normal change for you.
James Robinson (16:39):
It's funny, we had to cope with not only all
the medical stuff, thesurgeries, the needs, but we
also had to create a normal lifefor our children. Throughout all
this, and the medical needs wereconsiderable, not just the
hospital visits, but when Nadavcame home after his first
surgery, we had to worry abouthow to feed him to make sure
that he was able to grow likeother kids, right, that was a
huge challenge. We had to learnhow to monitor his oxygen
(17:01):
saturations in his blood whichwas frustrating because there
was little sensor that wentaround his toe that kept on
falling off. My secret talentis being able to place an NG
tube, a nasogastric tube. And heneeded it because kids with
cardiac issues, as you know,have challenges growing
sometimes. And so he neededsupplemental feeds at night. And
so we had to put this NG tube inand it often came out. When we
(17:23):
came home, the nurses had toteach us before we left the
hospital how to place the NGtube, which was probably the
most terrifying thing I've everdone in my life, to stick this
bright yellow tube down yourson'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 Iwas told I had to do it. And I
learned, I learned how to do itso well this is now my secret
(17:43):
talent is being able to put anNG tube in a sleeping baby in
the middle of the night withoutthem 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 aboutit, wistfully almost, is because
these are skills that they gaveme a certain amount of pride
able to take care of your childthat knows what they need. And
actually having mastered them -is sort of the expert in all
this stuff, you know, I havecertain things I picked up I
know how to get stuff done inhospitals, right? Like, if you
(18:14):
need an echo, I could probablytalk to the right people and
make sure that happened todayinstead of tomorrow, for
example. Yeah. And that becomespart of your identity. And it
makes you very proud as a parentto be able to do these things.
And unfortunately, one of thebig griefs that you feel when
you lose a child like this issuddenly 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 sameproblem so that you could keep
doing it? I mean, no, of course,there's, there is, I think, a
certain relief that I know thesethings, 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 stillcaring for him, obviously, but -
Michael Liben (18:51):
Well, I understand that. But they're
what I meant, I think, let memaybe I should rephrase it.
There's a there's a certainrelease for the child and
there's a certain relief for youthat 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 hadand I think I wrote about this
my book about the relationship Ihad my wife, a lot of it was
centered around his care. Thatwas a really foundational thing
in our relationship, right? Andthen you avoid gaining what you
lose. And everybody grievesdifferently, even people who've
been through exactly the samething you have, is processing
(19:27):
grief and dealing with it. Andso yeah, I guess it's a relief
to not have to deal with it. Butyou know, it's a tremendous
loss. And I think in my myexperience 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 theydon't have on top of that, that
layer of what do I have to donext? When's the next
appointment? Where do we have tobe? What do we have to do? I can
be at home with the memories ofmy daughter now and enjoy them
in a way that I couldn't enjoybeing on that edge. That may
(20:01):
only be and I certainly don'twish to belittle anybody who
feels differently, who's had aloss.
James Robinson (20:07):
Honestly, to separate out his life from his
medical needs, right? They werepart and parcel of who he was.
So it's hard for me to imaginehim without his life without
that aspect of it. And that'spart of what I miss, honestly,
is that dynamic, because that'spart of who he was.
Michael Liben (20:23):
In the ancient days of the Internet, when we
had these things calledListservs, where you could write
an email to a group, and theywould all get it and then you
will be flooded with responsesand answers. Somebody asked the
question, "If I could wave amagic wand over your child, and
completely cure him, would youdo it?" And think about your
(20:45):
answer, because a lot of peoplesaid, "No, I wouldn't. Because
it defines my child, it wouldn'tbe the child I raised". A lot of
people said, "It would changeme, my child defines who I am.
If you take away all the careand all the work that we've put
in, you've taken awayeverything". Do you have
thoughts on that?
James Robinson (21:05):
Yeah, I have an easy answer for that, I would
change anything, except probablythe end. But even that was part
of what his life was, his lifewas what it was. He was if he
had been born differently, hewouldn't have been him. And we
wouldn't have been us. And Ithink that's part of what the
acceptance that I talked aboutearlier, it's all about is
understanding that, that ashumans, these are things that
(21:26):
happen to us. And these arechallenges that we all face some
earlier, some later, that's apart of what makes us human. And
I accept that. I've come toaccept that.
Michael Liben (21:36):
We did a program, a couple of programs actually on
faith. I'm not going to go therehere. But one of the things that
we talked about was what you'retalking about, I believe, is
acceptance as kind of faith thatI believe things tend to work
out the way they should whetherI 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'sa "should" in there. But -
Yeah. Yeah.
Michael Liben (22:03):
Interesting.
Interesting. Ican accept that change, things
turn out the way they do.
Whether I like it or not, thingsturn out the way things go.
James Robinson (22:13):
Yeah, there were a million choices that we made
in this life, and some big andsome small. There was one really
big choice that I'm not sure Iwant to talk about yet, but it's
very easy to have regret aboutthe choices you make. And I
don't know I have enough faithin me and my wife's ability to,
at any given moment, be asinformed as possible about the
implications knowing that thereare risks of things happening,
(22:33):
to make the right decisions. Andif 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 prettydramatic consequences to to our
decisions. We got stranded in aforeign country halfway around
the world, right? But I don'tregret that decision. Because
the reasons that we made it,even if in retrospect, they were
overshadowed by the consequencesat the time, were the right
reasons, you have to live in themoment 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 isa presentation of Hearts Unite
the Globe and is part of the HUGPodcast Network. Hearts Unite
the Globe is a nonprofitorganization devoted to
providing resources to thecongenital heart defect
community to educate, empower,and enrich the lives of our
community members. If you wouldlike access to free resources
(23:23):
pertaining to the CHD community,please visit our website at
congenitalheartdefects.com forinformation about CHD, hospitals
that treat CHD survivors, summercamps for CHD families, and
much, much more.
So the dominoes began to fallduring a visit to Australia,
what led to Nadav's passing?
James Robinson (23:45):
We knew that Nadav would need three
surgeries, those first threesurgeries were planned, they all
went relatively well. Theyweren't run of the mill
surgeries, they were heartsurgeries, so they're pretty
significant. And the third onewent a little pear shaped at the
end and kind of worried for awhile there but he pulled
through it was pretty prettywell. It was on a family trip to
Australia that we decided totake that he developed a blood
(24:06):
clot in his circulation. Andthat required emergency surgery
halfway around the world and inan unfamiliar country. Although
my mother's from Australia, andthere are a lot of family, we
found ourselves stranded in thishospital far from home. And his
recovery was not assured. Thesurgery was 14 hours, 10 hours
of bypass. It was an emergencysurgery, he came out with
(24:28):
something called ECMO, which waspretty dire. And he spent three
months in intensive care inSydney before my wife discovered
a reason to bring him back tothe states which was a doctor in
Philadelphia who was doing aninnovative procedure that was
pretty much one of the onlythings that could have helped
Nadav at that point, he was nota candidate for another surgery.
(24:49):
So we arranged this crazymedical evacuation where a
doctor, three amazing nurses onthe 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 theback and American flags on the
(25:10):
sleeve. And, and brought himback to the state, which itself
was a risky procedure - theynever transport anybody that far
that sick. So it was pretty,pretty groundbreaking. And he
arrived at Philadelphia. And assoon as we arrived, he underwent
this procedure, which allowed usto hope for recovery and not
just stability, which is reallya blessing. He ended up spending
six months in Philadelphia, helearned to walk again, he
(25:32):
learned to write again, helearned to speak again, he got
back on his feet and recuperatedfor six months. And we found
ourselves having to, we live inNew York, not Philadelphia. So
the boys were back home in NewYork, we split our time between
the places. And it was really amiracle that we were able to get
home at all six months after wegot to Philadelphia finally had
(25:54):
a procedure that worked, thatallowed him to go home. And even
then though we knew that thingswould be difficult, but we've
been told that he wasn't goingto make it without a transplant
and he wasn't really a candidatefor transplant. He needed a
heart lung transplant and, buthe was in pretty bad shape. So
even though we tried our best tofind the medical solution to it,
we kind of knew in the back ofour minds, the day might come
(26:16):
that he would he would passaway. You know, we got back to
New York and enrolled him inkindergarten, which was a pretty
incredible thing that was prettymiraculous. So we sent him to
the public school across thestreet from our house, which was
pretty incredible, because theywelcomed him in, even though,
you know, he was the worldchampion cardiac kid with an
oxygen tank and a nasal cannula.
And it was there that we saw theworld at its best in many ways,
(26:39):
you know, from his teachers andhis classmates. And it was
really a blessing to see himsort of back home again, for
real, like a normal kid. Albeitunder very abnormal
circumstances. But we knew thatit wasn't sustainable, at the
end of the day, although wetried to have medical
interventions at the hospitalnear us. It wasn't enough and
that January he died suddenly,but not expectedly. And by then
(27:01):
I had been through so much andwrestling with the questions of
our mortality and the thingsthat we know and don't know, the
world's unknown terrorrs andwonders that that I think I've
learned to cope with it by thenit was really devastating thing.
I was at peace with his life, asit 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 publicschool with oxygen tank is, um,
if that's not hope, I don't knowwhat 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 beyondyour control. And we always try
to bend the world to our will.
And my wife had become veryinsistent that he had his normal
a life as possible. He had awheelchair at CHOP, we didn't
bring it home with us. We wantedhim to walk, and we sort of felt
that, it, with enoughpersistence that we could
achieve anything. And in manyways we did.
Michael Liben (27:53):
I'll accept that.
I'll accept that definition. Iwill. I it's just remarkable.
Maybe that's the word. It'sremarkable.
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 parentin this situation would do, you
sort of find yourself in thecircumstances, you're in and do
your best to make the most ofit. And the people we've met are
not, I mean, they're allextraordinary people in their
own way. But, but I would liketo think that anybody pushed
into the circumstance with, as aparent, that's what you do. You
(28:22):
know, whether a kid is healthyor 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 wrotean 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 actuallyreally comforting after he died
to be surrounded by a lot ofremarkable people, especially
Jewish people who recognize hisname is a Hebrew name and
reached out to help us in theaftermath of his death are
really comforting. And one ofthe things that the company did
for us is is is give us the timewe need to both when he was when
(28:57):
he was born when he was sick,and also when he died, the time
that we needed to heal. And mywife and I decided that we
wanted to cope with, or wedecided that one of the things
we wanted to do was to get outof town. Traveling was always
really important to us as afamily, 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 soughtsolace in the open roads. So we,
I asked for a month off work andthey gave it to me which is
great. And we hopped in a carand we we did the great American
road trip. We drove out to theMidwest, a place I've never been
before, all the way out to SouthDakota. And then back there was
eclipse 2017 that we saw. Wedrove down to Charleston, South
(29:38):
Carolina, back to New York, abig loop. And we decided that we
didn't want to be stressed outon a trip so we we had a couple
of ground rules. One of therules was we weren't going to
drive more three hours a day andthen at every stop we only did
one thing in any city. You knowwhat, you know, ass tempting as
it was to do more than onething, and we stuck to it, like
in Indianapolis, we went to theSpeedway, right in Springfield,
(30:01):
Illinois, went to Lincoln'shome, in St. Louis went to the
arch, you know, and it reduced alot of the stress and pressure.
Yeah. And we got to experiencethings that we had never seen.
And there's something about likebeing on the road that I find
very comforting and calming. Andyet we missed him terribly. And
the way we cope with that was,everywhere we were, it's a
Jewish tradition that when youvisit a grave site, you place a
(30:24):
stone, a memorial. And wedecided that everywhere we went,
we would find a stone, and wewould pick it up and put it in a
bag. So everywhere we went wepicked up a stone, we took a
moment to remember him, we wrotedown where we were in the day.
And then when we got back to NewYork, we drove to his his grave,
went to see him. And we took allthe stones and there was one
seashell, I think Myrtle Beach,as well. And I think there might
(30:47):
have been a coconut, I'm notsure where the coconut came, and
it means another trip. And wetook the bag and we remembered
all the places we've been in howmuch we missed him. And we were
there with him too. And that waspretty special way to remember
him. So The Times encouraged meto write about it, which I found
very flattering, because I'm nota working journalist, although I
(31:07):
do write from time to time. Andthey published the piece that I
wrote about a trip and it wasreally well received at that led
to me writing a memoir about hislife, which has been published
this past November, and that wasextraordinary gratifying to tell
our story to people who may havedealt with similar circumstances
or for medical professionalscaring for kids, like our son,
(31:27):
to share our story in the hopesthat it'll help them is
something that I really want todo. And the response to it has
been very gratifying. And bestof all, it gives me permission
to return to a world that Iunfortunately had been cast out
of, communities which I was apart of and now are somewhat
irrelevant because I I no longerhave a son with a medical
condition, although he'll alwaysbe with us. And so having
(31:49):
published the book allows me tohave wonderful conversations
with all sorts of interestingpeople 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 yourdilemma there. I do. And that's
one of the reasons that I havethis podcast is to connect once
again with all those people thatI knew. And so many more people
that I don't know or have yet toknow. Before we conclude, tell
us about your website and howpeople can find your book.
James Robinson (32:16):
The book is called "More Than We Expected -
Five Years with a RemarkableChild". It's currently for sale
on Amazon, major book retailersonline, independent bookstores,
if your local bookstore doesn'thave it, just ask them and
they'll get you a copy, MoreThan We Expected" is the title.
And the website is different,it's morethanamememoir.com. But
(32:36):
the book's title is "More ThanWe Expected". And if you go to
the website, there's informationon where to find it, and there's
also something special that,that I've set up, which is if
you read the book, you'llunderstand that oregano played a
really important part of ourson's life. Now, read the book,
and want little packet oforegano to remember him by I'm
happy to send it to you. And ifyou fill out the form on the
(32:57):
website, and I'll send that out,then maybe that'll bring you a
little of the joy that we feltas 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 wasspecial and we were able to hear
that and feel that for youtoday. I trust that anybody who
reads your book will feel itmore to the heart. He clearly
was special and remarkable in somany ways. And thank you for
(33:27):
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 JamesRobinson for sharing his
experience and his wisdom withus. Please join us at the
beginning of the month for abrand 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 griefjourney. "Bereaved But Still Me"
is a monthly podcast and a newepisode is released on the first
Thursday of each month. You canhear our podcast anywhere you
normally listen to podcasts atany time. Join us again next
(34:04):
month for a brand new episode of"Bereaved But Still Me".
By the end when he actually died, I had gotten
(00:02):
to a point where I was able totell his brothers that he had
died. And the reason was becauseas a father you feel a real
obligation to explain the worldto your children like the truth
of the world, but also explainit. And I realized that death
was something that I could notexplain. And so I didn't try to
explain it, I just told them thetruth as best I could.
Michael Liben (00:32):
Welcome friends to the Eighth Season of
"Bereaved But Still Me". Ourpurpose is to empower members of
our community. I am MichaelLiben and the father of three
children - Idan, Sapir, andLiel. Liel, my youngest
daughter, was born with a heartdefect, and later developed
autism and epilepsy. Losing herat 15 is what has brought me
here to be the host of thisprogram. Our guest tonight is
(00:53):
James Robinson, James Robinsonis 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 toRecovery" was featured on the
front page of The Times' SundayTravel section, describing a
road trip his family took afterthe death of his five year old
son, Nadav. The piece wastranslated into two languages,
(01:15):
received scores of appreciativecomments, and was selected as a
Notable Essay, and The BestAmerican Travel Writing 2018.
The overwhelming response to thearticle inspired James to write
his book, "More Than We Expected- Five Years with a Remarkable
Child", detailing the many giftsof this son's brief but
remarkable life and findingstrength in the most unexpected
(01:36):
places. James, thank you so muchfor joining us today on
"Bereaved But Still Me" andlet's start with telling us
about Nadav.
James Robinson (01:48):
his brothers Gilad and Yaniv, and he was born
12 years ago with a very seriouscongenital heart defect, a
single ventricle. And he was aremarkable child, which is the
reason that I use that as thetitle of my book, His condition
was exceedingly rare, he neededthree surgeries by the age of
(02:09):
four. But he had a realremarkable spirit that I think
inspired everybody he met. Andhis life taught me really
profound things about what itmeans to be human. You know,
people often talk about heartconditions in very light hearted
tones, like it's something to beashamed of some sort of tragedy.
Quite the contrary, in our case,Nadav's condition really opened
(02:29):
my eyes to something thst wasour thing, one of the reasons I
wrote the book, and made mereconsider how we view the world
in a way that I think any parentunderstands. But especially
people with children incomplicated situations, you're
forced to really confront somethings that you don't confront
every day, both good and bad.
As I said, it was real.
Michael Liben (02:48):
What are some of the things that you might
confront, I mean, I've beenthere, but maybe some of our
listeners don't know.
James Robinson (02:53):
Nadav was diagnosed in utero, before he
was born, we knew that it mightbe complicated, and we knew that
there was a possibility that hewouldn't make it, the medical
plan was to try to get him toteenage years where he would be
a candidate for a hearttransplant. But I knew when he
was born, that there would be achance that I would have to tell
his brothers that he had died.
And that's a real terrifyingthing as a father to have to
(03:15):
deal with. At the same time, thereality of his condition really,
as I mentioned, opened my eyesto 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, theselittle tiny hairs on the outside
of the embryo didn't beat rightand caused a defect in the span
of about three hours. And itreally makes you sort of wonder,
(03:36):
in the fact that anything worksright, that our bodies formed
the way that they do. Andthroughout his life, his body
was thrown a lot of medicalchallenges, he was really,
really resilient. And theamazing ways in which the body
grows and heals is really quiteprofound. And to watch it in
action, when a child, three orfour years old is recovering
from from real medicalchallenges is really inspiring.
(03:58):
On top of that, he just had anamazing personality. He was a
real charmer, he was an oldsoul. He was really involved in
his medical condition. But healso was sort of a really,
really wise kid and we wereprivileged too.
Michael Liben (04:12):
I think that sometimes, or maybe often, goes
hand in hand, the special kidswith the special hearts, they
also have special souls that arewonderfully interesting people,
did you find that?
James Robinson (04:25):
All three of our sons are remarkable in their own
way, they all have their ownpersonality.
Michael Liben (04:29):
I didn't mean to take anything away.
James Robinson (04:31):
But you know, we had a lot of medical
experiences, you know, Nadavendured, a lot of really
terrible things, the ways inwhich they had to operate on
dysregulation that sort ofrewired him so that they worked
in a way that the rest of ustake for granted. And through it
all he was very strong and verystoic and he was also very
(04:52):
involved. I remember when wewere in the hospital, our
journey, as you know, come tothe world. We live in New York,
but his home hospital was herein New York, we got stranded on
a trip to Australia and spentthree months in a hospital in
Australia, we then had aninnovative procedure at a
hospital in Philadelphia andspent six months there. And
throughout it all, Nadav, eventhough he was just four was
really involved in his care,like doctors and look at his X
(05:16):
ray and, and he would sit thereand look at it too. And, and as
people tried to talk down to himwith, you know, baby terms, he
would correct them, he'd use themedical term. So, you know, I
think he was a, you know, I'venever quite sure of how aware he
was about his medical condition.
But, but I suspect from what weobserved that he was actually
maybe the wisest one of all ofus. And in fact, his body did
(05:37):
most of the healing. You know,one of the things that surprised
me about being in this situationwas like, so you imagine the
doctors' role was to healpeople. Right? That's a doctor's
role and you see, got thedoctors who can heal your child.
And we actually learned a lotfrom the doctors who took care
of him because they viewed theirrole not as to heal him. But
they had a much humbler viewthat the only person who could
heal was Nadav himself, that'swhat the body does is it heals.
(05:59):
And their role was to give itthe best opportunity to do that.
And time and time again, we sawthese amazing things happening
in his body, the veins in hisbody, rewiring themselves to
account for an unnaturalcirculation to the point where
he, you know, he was able towalk out of the hospital when
nobody knew didn't quite knewhow his circulation worked. It's
really kind of inspiring. So hehad kind of this, this explicit
(06:20):
understanding of what was goingon but he also had sort of this
inner wisdom about how to live.
And I think that that'ssomething that we often take for
granted, when we heal, or whenwe grow, that it just happens.
But there is some like innateforce, which is really quite
amazing to see in action. Andwhen things go wrong, you see
that in it's most vivid way.
Michael Liben (06:40):
Well, you know, that's the funny thing. Because
I, I've often said this about myown children. And we also had
great difficulty in having ourchildren. When you think about
everything that has to goexactly right, that anybody is
ever born, or well, is nothingshort of miraculous.
James Robinson (06:57):
I'll tell you a moment when we found ourselves
trying to recover from a familytrip horribly wrong. In
Australia, he wound up havingemergency surgery and planning
consultant critical care. And Iremember those first few nights
when the doctors came to us withsome pretty grave news. There
was one night where we werecalled in for a family meeting.
And as you know, havingexperienced this, like a family
(07:18):
meeting is never good. Andyou're surrounded by doctors,
and there's nurses, there's allsorts of people there. And then
it's you and your wife sittingon a couch staring at the mass
of people. And the lead doctorlooked at us and said,"I just
have to tell you straight outthat Nadav is not doing well.
He's got a high white blood cellcount. And he's running a fever.
And there's three things thatcould happen tonight, there's
(07:40):
three scenarios. One is that hecould get better. And that's not
going to happen. Second thingthat can happen is he could hold
steady, and that's what we'rehoping for. And then the third
thing that could happen is it hecould deteriorate and if that
happens, there's nothing more wecan 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 whatyou're saying is that it's up to
(08:02):
him" - talking about Nadav. Andthe doctor gave her a look and
said, "Yeah, I suppose you'reright", and then she said,
"Well, I could live with that,because I trust him". That was a
sort of faith that I had neverreally considered before. You
know, you think externally forfaith, a lot of the times that
you think about your deity orsome spiritual answer to the
world. But, you know, that was afaith in our humanity, and our
(08:24):
innate ability to live. And Ifound that to be, you know,
really profound.
Michael Liben (08:34):
Well I remember, one of my mother's heart
attacks, she's had I think, nowthree. And this was years and
years ago, and they told us toprepare for the worst that she
wasn't gonna come out of this.
And I just looked at mysiblings. And I said, "Mom, will
know what to do". And she cameback.
James Robinson (08:50):
And that was one of the hardest things about
about being his parent is I knewfrom the moment he was born that
someday I might have to saygoodbye to him. And I might have
to tell, I might have to tellhis brothers and that day did
Michael Liben (09:01):
That leads me into the next question that
come.
we've learned here over theyears about anticipatory grief.
And when you learned aboutNadav's condition, you're
suddenly thrown into theanticipatory grief mode. But
also, I would consider that theflip side of anticipatory grief
is hope. We have the one side ofthe possible bad news. And we
cling on the other side to thegood news. Right. So talk a
(09:21):
little bit about that about thedifference between hope and the
ultimate bad news.
James Robinson (09:26):
Hope was always a tricky thing for me. I hadn't,
I think I mentioned the wordonce in my book. At the time
that I mentioned it is when wewere sitting in a family
meeting, where we were told flatout that Nadav would not make
it. And it turns out that theywere wrong in that circumstance.
They were right in the longterm, but they were wrong in the
short term. But we just heardthis terrible news from this
doctor we really respectedbecause he told us the truth.
(09:49):
And at the end of the meeting,other doctor raised their hand
and said, "You know, youshouldn't give up hope". And I
looked at her and I said, "Howcould you say such a thing?
You've just told me that our sonis going to die? How am supposed
to not give up hope?' It wassort of a meaningless statement.
And it was only much later whenI found out that's what doctors
are trained to do is, is tryingto not extinguish families'
hope, apparently in med school,medical school this is something
(10:11):
that they talked about a lot. Italked to this doctor who broke
the news, not the one who saidanything 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 tonot give false hope. So you
could hope that his last days iswill be comfortable and peaceful
and whatever, but but false hopewould be, "Hey, maybe he'll pull
(10:31):
through, maybe things willmagically turn around, and maybe
that will happen, we still seemiracles, but it's sort of to
plant that seed in anunrealistic way, is a disservice
to the parent". The other thingthat he said was, he said,
"Don't give false hope, behonest and direct" and he said,
"Get the sex of the childright". And I thought that was
interesting, too, is one of histop three things. And it's true,
(10:52):
because if you don't care enoughabout the child of the family to
know what gender they are, youknow, that's kind of an
insulting thing and that's goingto drive a wedge between you. So
I don't know if hope was reallywhat I what I felt, I think what
I come to realize in the courseof his life, is that there are
some things that I will neverunderstand. And that's what
makes me human, that's whatmakes us human, there's a limit
(11:15):
to what we can know, both goodand bad. I don't know why we
die. I don't know how that'sdetermined. I've always been
afraid of it, but I've come toaccept it. And at the same time,
I don't know why life is somagical, why the body knows to
heal itself or grow. That'ssomething that's, that's
wonderful that I don't knowabout. But I think by the end,
when he actually died, I hadgotten to a point where I was
(11:37):
able to tell his brothers thathe had died. And the reason was,
because as a father, you feel areal obligation to explain the
world to your children, like thetruths of the world, but also
explaining. And I realized thatdeath was something that I could
not explain. And so I tried toexplain it, I just told them the
truth as best I could. And I wasable to do that. And I think
that's what I took out of thisexperience is sort of an
(11:59):
acceptance that we are at themercy of things that we will
never understand. And that'swhat makes us human. And that's
both a terrifying and beautifulthing. 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 thatyou would like addressed on our
program, please send an email toMichael Liven,at
michael@bereavedbutstillme.com.
That'smichael@bereavedbutstillme.com.
This content is not intended tobe a substitute for professional
(12:31):
medical advice, diagnosis, ortreatment. The opinions
expressed in the podcast are notthose of Hearts Unite the Globe,
but of the hosts and guests andare intended to spark discussion
about issues pertaining tocongenital heart disease or
bereavement.
Michael Liben (12:50):
James, we both had children with very
complicated hearts that requiredmultiple open heart surgeries.
And for us, this means thatwe're given bad news that they
need open heart surgery, andthen the good news when they
survive. And that happens overand over and over again. And
this creates a kind of compoundgrief.
James Robinson (13:06):
We were in the situation of knowing that Nadav
was born that he would need atleast three surgeries. The plan
was to make sure that you canreorient circulation using
surgeries in five days, fivemonths and then around four
years old, which would hopefullyhelp them survive till teenage
years when he would be acandidate for a heart
transplant. So we kind of knewthe routine in advance. And
that's not to say we didn't havesetbacks and unexpected things.
(13:29):
But we made a promise to hisolder brother early on that we
would be as candid with him aspossible about what was
happening, even though he wasonly four years old. That
actually came from a promisethat we made to him when he was
old enough to listen, when wesaid, "We will do our best to be
honest with you about thingsthat are happening, because we
think you can handle it. And, inreturn, we expect you to be
honest with us about things thatare troubling you". We'd rather
have him come to us with a beable to talk to us about
(13:51):
something frustrating ordifficult and know that we would
not get angry. So we made apromise that we won't get angry
if you tell us the truth. And Ithink many people think it's a
lot for a child to absorb andunderstand that your your
brother is born with a heartdefect that he is going to need
surgeries that he might die. Butwe always felt that kids deserve
to know the truth. And over thecourse of Nadav's life, we
(14:12):
learned how super strong andresilient kids are and how they
are able to cope with sometruths more than adults are. And
I do think they really deservethe respect of of honesty and
candor. You don't have to gointo every single little detail.
But I think being honest aboutthe things that matter, it's
really important when dealingwith children.
Michael Liben (14:29):
I totally agree with that. My daughter got a
pacemaker when she was abouttwo. And we went through a
routine because she wasnonverbal, we went through a
routine, "The heart goes -" andshe'd say, "boom, boom, boom".
And I'd say, "The pacemaker goes-" and she'd say, "tick, tick
tick," because like a littlecomputer account, like a little
clock inside your body. One dayI asked her, I said, "Does
(14:51):
everybody have a pacemaker?" Andshe said, "Yeah" and I said,
"No, actually, it's just you".
And I think that scared herbecause I think for the first
time she realized, maybe notevery kid goes through heart
surgery as many times as shehad. 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 itis they do face this stuff very
differently than adults do. Youknow, there was a time when
Nadav needed nasal cannula,extra oxygen that came from a
tank that we carried around onour back and it added extra
oxygen. And adults, when theylook at that they're terrified.
Because if a child needs oxygenit must mean something is
terribly, and they kind of freakout a little bit. And kids, when
(15:29):
they look at it, the dots appearwhen they looked at it, once you
explain it to them, that heneeds extra oxygen to breathe,
and to live, and this is giveshim the extra oxygen he needs.
Kids are really at peace withthat, like they look at that as
a really good thing. Wow, he'sgot 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 Ithink adults can really learn
from. There is this awkwardnessaround adults that is often not
present with children. Now,that's not to say that kids
don't tease each other, so maybeit's a function of being 5 and
not 15. Yeah, and I know there'sI know, there's a lot of
awkwardness or a difference thatwe didn't experience,
thankfully, but I think not tobe condescending to children
(16:11):
about what they can handle issuper 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 themcredit for. And they have a need
to understand their world with acertain order. And the more you
can give them the more orderthey can have.
James Robinson (16:26):
Right.
Michael Liben (16:27):
One of the challenging parts of being a
parent of a child with specialneeds is that you can never go
back to the way things werebefore you have that child, you
have a new normal. So tell usabout how normal change for you.
James Robinson (16:39):
It's funny, we had to cope with not only all
the medical stuff, thesurgeries, the needs, but we
also had to create a normal lifefor our children. Throughout all
this, and the medical needs wereconsiderable, not just the
hospital visits, but when Nadavcame home after his first
surgery, we had to worry abouthow to feed him to make sure
that he was able to grow likeother kids, right, that was a
huge challenge. We had to learnhow to monitor his oxygen
(17:01):
saturations in his blood whichwas frustrating because there
was little sensor that wentaround his toe that kept on
falling off. My secret talentis being able to place an NG
tube, a nasogastric tube. And heneeded it because kids with
cardiac issues, as you know,have challenges growing
sometimes. And so he neededsupplemental feeds at night. And
so we had to put this NG tube inand it often came out. When we
(17:23):
came home, the nurses had toteach us before we left the
hospital how to place the NGtube, which was probably the
most terrifying thing I've everdone in my life, to stick this
bright yellow tube down yourson'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 Iwas told I had to do it. And I
learned, I learned how to do itso well this is now my secret
(17:43):
talent is being able to put anNG tube in a sleeping baby in
the middle of the night withoutthem 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 aboutit, wistfully almost, is because
these are skills that they gaveme a certain amount of pride
able to take care of your childthat knows what they need. And
actually having mastered them -is sort of the expert in all
this stuff, you know, I havecertain things I picked up I
know how to get stuff done inhospitals, right? Like, if you
(18:14):
need an echo, I could probablytalk to the right people and
make sure that happened todayinstead of tomorrow, for
example. Yeah. And that becomespart of your identity. And it
makes you very proud as a parentto be able to do these things.
And unfortunately, one of thebig griefs that you feel when
you lose a child like this issuddenly 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 sameproblem so that you could keep
doing it? I mean, no, of course,there's, there is, I think, a
certain relief that I know thesethings, 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 stillcaring for him, obviously, but -
Michael Liben (18:51):
Well, I understand that. But they're
what I meant, I think, let memaybe I should rephrase it.
There's a there's a certainrelease for the child and
there's a certain relief for youthat 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 hadand I think I wrote about this
my book about the relationship Ihad my wife, a lot of it was
centered around his care. Thatwas a really foundational thing
in our relationship, right? Andthen you avoid gaining what you
lose. And everybody grievesdifferently, even people who've
been through exactly the samething you have, is processing
(19:27):
grief and dealing with it. Andso yeah, I guess it's a relief
to not have to deal with it. Butyou know, it's a tremendous
loss. And I think in my myexperience 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 theydon't have on top of that, that
layer of what do I have to donext? When's the next
appointment? Where do we have tobe? What do we have to do? I can
be at home with the memories ofmy daughter now and enjoy them
in a way that I couldn't enjoybeing on that edge. That may
(20:01):
only be and I certainly don'twish to belittle anybody who
feels differently, who's had aloss.
James Robinson (20:07):
Honestly, to separate out his life from his
medical needs, right? They werepart and parcel of who he was.
So it's hard for me to imaginehim without his life without
that aspect of it. And that'spart of what I miss, honestly,
is that dynamic, because that'spart of who he was.
Michael Liben (20:23):
In the ancient days of the Internet, when we
had these things calledListservs, where you could write
an email to a group, and theywould all get it and then you
will be flooded with responsesand answers. Somebody asked the
question, "If I could wave amagic wand over your child, and
completely cure him, would youdo it?" And think about your
(20:45):
answer, because a lot of peoplesaid, "No, I wouldn't. Because
it defines my child, it wouldn'tbe the child I raised". A lot of
people said, "It would changeme, my child defines who I am.
If you take away all the careand all the work that we've put
in, you've taken awayeverything". Do you have
thoughts on that?
James Robinson (21:05):
Yeah, I have an easy answer for that, I would
change anything, except probablythe end. But even that was part
of what his life was, his lifewas what it was. He was if he
had been born differently, hewouldn't have been him. And we
wouldn't have been us. And Ithink that's part of what the
acceptance that I talked aboutearlier, it's all about is
understanding that, that ashumans, these are things that
(21:26):
happen to us. And these arechallenges that we all face some
earlier, some later, that's apart of what makes us human. And
I accept that. I've come toaccept that.
Michael Liben (21:36):
We did a program, a couple of programs actually on
faith. I'm not going to go therehere. But one of the things that
we talked about was what you'retalking about, I believe, is
acceptance as kind of faith thatI believe things tend to work
out the way they should whetherI 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'sa "should" in there. But -
Yeah. Yeah.
Michael Liben (22:03):
Interesting.
Interesting. Ican accept that change, things
turn out the way they do.
Whether I like it or not, thingsturn out the way things go.
James Robinson (22:13):
Yeah, there were a million choices that we made
in this life, and some big andsome small. There was one really
big choice that I'm not sure Iwant to talk about yet, but it's
very easy to have regret aboutthe choices you make. And I
don't know I have enough faithin me and my wife's ability to,
at any given moment, be asinformed as possible about the
implications knowing that thereare risks of things happening,
(22:33):
to make the right decisions. Andif 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 prettydramatic consequences to to our
decisions. We got stranded in aforeign country halfway around
the world, right? But I don'tregret that decision. Because
the reasons that we made it,even if in retrospect, they were
overshadowed by the consequencesat the time, were the right
reasons, you have to live in themoment 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 isa presentation of Hearts Unite
the Globe and is part of the HUGPodcast Network. Hearts Unite
the Globe is a nonprofitorganization devoted to
providing resources to thecongenital heart defect
community to educate, empower,and enrich the lives of our
community members. If you wouldlike access to free resources
(23:23):
pertaining to the CHD community,please visit our website at
congenitalheartdefects.com forinformation about CHD, hospitals
that treat CHD survivors, summercamps for CHD families, and
much, much more.
So the dominoes began to fallduring a visit to Australia,
what led to Nadav's passing?
James Robinson (23:45):
We knew that Nadav would need three
surgeries, those first threesurgeries were planned, they all
went relatively well. Theyweren't run of the mill
surgeries, they were heartsurgeries, so they're pretty
significant. And the third onewent a little pear shaped at the
end and kind of worried for awhile there but he pulled
through it was pretty prettywell. It was on a family trip to
Australia that we decided totake that he developed a blood
(24:06):
clot in his circulation. Andthat required emergency surgery
halfway around the world and inan unfamiliar country. Although
my mother's from Australia, andthere are a lot of family, we
found ourselves stranded in thishospital far from home. And his
recovery was not assured. Thesurgery was 14 hours, 10 hours
of bypass. It was an emergencysurgery, he came out with
(24:28):
something called ECMO, which waspretty dire. And he spent three
months in intensive care inSydney before my wife discovered
a reason to bring him back tothe states which was a doctor in
Philadelphia who was doing aninnovative procedure that was
pretty much one of the onlythings that could have helped
Nadav at that point, he was nota candidate for another surgery.
(24:49):
So we arranged this crazymedical evacuation where a
doctor, three amazing nurses onthe 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 theback and American flags on the
(25:10):
sleeve. And, and brought himback to the state, which itself
was a risky procedure - theynever transport anybody that far
that sick. So it was pretty,pretty groundbreaking. And he
arrived at Philadelphia. And assoon as we arrived, he underwent
this procedure, which allowed usto hope for recovery and not
just stability, which is reallya blessing. He ended up spending
six months in Philadelphia, helearned to walk again, he
(25:32):
learned to write again, helearned to speak again, he got
back on his feet and recuperatedfor six months. And we found
ourselves having to, we live inNew York, not Philadelphia. So
the boys were back home in NewYork, we split our time between
the places. And it was really amiracle that we were able to get
home at all six months after wegot to Philadelphia finally had
(25:54):
a procedure that worked, thatallowed him to go home. And even
then though we knew that thingswould be difficult, but we've
been told that he wasn't goingto make it without a transplant
and he wasn't really a candidatefor transplant. He needed a
heart lung transplant and, buthe was in pretty bad shape. So
even though we tried our best tofind the medical solution to it,
we kind of knew in the back ofour minds, the day might come
(26:16):
that he would he would passaway. You know, we got back to
New York and enrolled him inkindergarten, which was a pretty
incredible thing that was prettymiraculous. So we sent him to
the public school across thestreet from our house, which was
pretty incredible, because theywelcomed him in, even though,
you know, he was the worldchampion cardiac kid with an
oxygen tank and a nasal cannula.
And it was there that we saw theworld at its best in many ways,
(26:39):
you know, from his teachers andhis classmates. And it was
really a blessing to see himsort of back home again, for
real, like a normal kid. Albeitunder very abnormal
circumstances. But we knew thatit wasn't sustainable, at the
end of the day, although wetried to have medical
interventions at the hospitalnear us. It wasn't enough and
that January he died suddenly,but not expectedly. And by then
(27:01):
I had been through so much andwrestling with the questions of
our mortality and the thingsthat we know and don't know, the
world's unknown terrorrs andwonders that that I think I've
learned to cope with it by thenit was really devastating thing.
I was at peace with his life, asit 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 publicschool with oxygen tank is, um,
if that's not hope, I don't knowwhat 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 beyondyour control. And we always try
to bend the world to our will.
And my wife had become veryinsistent that he had his normal
a life as possible. He had awheelchair at CHOP, we didn't
bring it home with us. We wantedhim to walk, and we sort of felt
that, it, with enoughpersistence that we could
achieve anything. And in manyways we did.
Michael Liben (27:53):
I'll accept that.
I'll accept that definition. Iwill. I it's just remarkable.
Maybe that's the word. It'sremarkable.
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 parentin this situation would do, you
sort of find yourself in thecircumstances, you're in and do
your best to make the most ofit. And the people we've met are
not, I mean, they're allextraordinary people in their
own way. But, but I would liketo think that anybody pushed
into the circumstance with, as aparent, that's what you do. You
(28:22):
know, whether a kid is healthyor 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 wrotean 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 actuallyreally comforting after he died
to be surrounded by a lot ofremarkable people, especially
Jewish people who recognize hisname is a Hebrew name and
reached out to help us in theaftermath of his death are
really comforting. And one ofthe things that the company did
for us is is is give us the timewe need to both when he was when
(28:57):
he was born when he was sick,and also when he died, the time
that we needed to heal. And mywife and I decided that we
wanted to cope with, or wedecided that one of the things
we wanted to do was to get outof town. Traveling was always
really important to us as afamily, 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 soughtsolace in the open roads. So we,
I asked for a month off work andthey gave it to me which is
great. And we hopped in a carand we we did the great American
road trip. We drove out to theMidwest, a place I've never been
before, all the way out to SouthDakota. And then back there was
eclipse 2017 that we saw. Wedrove down to Charleston, South
(29:38):
Carolina, back to New York, abig loop. And we decided that we
didn't want to be stressed outon a trip so we we had a couple
of ground rules. One of therules was we weren't going to
drive more three hours a day andthen at every stop we only did
one thing in any city. You knowwhat, you know, ass tempting as
it was to do more than onething, and we stuck to it, like
in Indianapolis, we went to theSpeedway, right in Springfield,
(30:01):
Illinois, went to Lincoln'shome, in St. Louis went to the
arch, you know, and it reduced alot of the stress and pressure.
Yeah. And we got to experiencethings that we had never seen.
And there's something about likebeing on the road that I find
very comforting and calming. Andyet we missed him terribly. And
the way we cope with that was,everywhere we were, it's a
Jewish tradition that when youvisit a grave site, you place a
(30:24):
stone, a memorial. And wedecided that everywhere we went,
we would find a stone, and wewould pick it up and put it in a
bag. So everywhere we went wepicked up a stone, we took a
moment to remember him, we wrotedown where we were in the day.
And then when we got back to NewYork, we drove to his his grave,
went to see him. And we took allthe stones and there was one
seashell, I think Myrtle Beach,as well. And I think there might
(30:47):
have been a coconut, I'm notsure where the coconut came, and
it means another trip. And wetook the bag and we remembered
all the places we've been in howmuch we missed him. And we were
there with him too. And that waspretty special way to remember
him. So The Times encouraged meto write about it, which I found
very flattering, because I'm nota working journalist, although I
(31:07):
do write from time to time. Andthey published the piece that I
wrote about a trip and it wasreally well received at that led
to me writing a memoir about hislife, which has been published
this past November, and that wasextraordinary gratifying to tell
our story to people who may havedealt with similar circumstances
or for medical professionalscaring for kids, like our son,
(31:27):
to share our story in the hopesthat it'll help them is
something that I really want todo. And the response to it has
been very gratifying. And bestof all, it gives me permission
to return to a world that Iunfortunately had been cast out
of, communities which I was apart of and now are somewhat
irrelevant because I I no longerhave a son with a medical
condition, although he'll alwaysbe with us. And so having
(31:49):
published the book allows me tohave wonderful conversations
with all sorts of interestingpeople 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 yourdilemma there. I do. And that's
one of the reasons that I havethis podcast is to connect once
again with all those people thatI knew. And so many more people
that I don't know or have yet toknow. Before we conclude, tell
us about your website and howpeople can find your book.
James Robinson (32:16):
The book is called "More Than We Expected -
Five Years with a RemarkableChild". It's currently for sale
on Amazon, major book retailersonline, independent bookstores,
if your local bookstore doesn'thave it, just ask them and
they'll get you a copy, MoreThan We Expected" is the title.
And the website is different,it's morethanamememoir.com. But
(32:36):
the book's title is "More ThanWe Expected". And if you go to
the website, there's informationon where to find it, and there's
also something special that,that I've set up, which is if
you read the book, you'llunderstand that oregano played a
really important part of ourson's life. Now, read the book,
and want little packet oforegano to remember him by I'm
happy to send it to you. And ifyou fill out the form on the
(32:57):
website, and I'll send that out,then maybe that'll bring you a
little of the joy that we feltas 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 wasspecial and we were able to hear
that and feel that for youtoday. I trust that anybody who
reads your book will feel itmore to the heart. He clearly
was special and remarkable in somany ways. And thank you for
(33:27):
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 JamesRobinson for sharing his
experience and his wisdom withus. Please join us at the
beginning of the month for abrand 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 griefjourney. "Bereaved But Still Me"
is a monthly podcast and a newepisode is released on the first
Thursday of each month. You canhear our podcast anywhere you
normally listen to podcasts atany time. Join us again next
(34:04):
month for a brand new episode of"Bereaved But Still Me".
Popular Podcasts
Are You A Charlotte?
In 1997, actress Kristin Davis’ life was forever changed when she took on the role of Charlotte York in Sex and the City. As we watched Carrie, Samantha, Miranda and Charlotte navigate relationships in NYC, the show helped push once unacceptable conversation topics out of the shadows and altered the narrative around women and sex. We all saw ourselves in them as they searched for fulfillment in life, sex and friendships. Now, Kristin Davis wants to connect with you, the fans, and share untold stories and all the behind the scenes. Together, with Kristin and special guests, what will begin with Sex and the City will evolve into talks about themes that are still so relevant today. "Are you a Charlotte?" is much more than just rewatching this beloved show, it brings the past and the present together as we talk with heart, humor and of course some optimism.
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com