Rebuilding Life after the Loss of a Sibling

This episode of "Heart to Heart with Michael" features Jay Handlin. A childhood friend of Host Michael Liben, for the very first time they openly discuss what Jay's life was life for him after the loss of his brother. These two friends explore different losses Jay has experienced and how those losses have shaped him into the man he is today.

Please take a moment to follow us on your preferred social media platforms:

Apple Podcasts

Facebook

YouTube

Instagram

Transcript

spk_0:   0:00
here is no good age at which to lose anybody close to us. But when you're a young person, I think you know, up until that point, I still had that gleeful ignorance of mortality that, you know, we all felt like like we were gonna live forever that

spk_3:   0:18
way. Welcome friends to the fourth Season of Heart to Heart with Michael, a program for the Braves community. Our purpose is to empower members of our community. This season. We're looking at grief in its various forms on. We'll be looking at the role of trauma as it affects grief. Today's program is rebuilding life after the loss of a sibling with us Today is our guest, J. Hamlet Segment one will meet J and learned about his unique lifestyle and the second segment learn about the grief he suffered when he lost his brother. And in the last segment, J will talk about how losing his brother and having a special needs daughter has shaped him to be the person He is A J. Hammons brother, Mitchell Howard Hamlin was

spk_1:   0:59
born April 5th, 1955 and died April 8th, 1976. Jay was 17 when Mitch died Mitch was painfully smart, which, combined with a dearth of athletic ability and a bit of social awkwardness, made public school in Queens tough. He hit a stride in high school, where academics were worth something, and also turned himself into a varsity fencer, then really excellent. In college, he was a university scholar, N. Y. U, and plan to be a biblical archaeologist. He was on his junior year abroad at the Hebrew University of Jerusalem in Israel when he died in an automobile accident with his girlfriend and her family. He was, at that time, the happiest he'd been in his life. He was, among other things, intense, deeply religious, loyal, loving and a self made Israeli folk dance expert. Or visit languages studying biblical, Hebrew, Arabic and ancient Greek, all in the same semester, and y you a truly righteous person and the greatest reader J has ever known. Along the way, Mitch studied karate at a tornado and performed in musical theater. He always planned to make Elliot to Israel, and he is buried there. Jay is a husband and a father J's denied. For over 28 years, he and his wife, Laura, have one daughter, Rachel, who has Down Syndrome. She was fully mainstreamed in school, and in May 2020 she will be graduating with her bachelor of fine arts degree in photography. Laura lives with Rachel in California. J lives in New York City. Jay, thank you so much for coming into the program. Thanks for having me, Michel. How was your life structured now? Because it seems quite different from the kind of life most married people live. And I'm referring to 3000 miles between you and the rest of your family.

spk_0:   2:32
When Rachel was born, nobody told us. Hey, your daughter with Down syndrome might go to college one day. So as that became possible, um, along with that came certain costs that we might not have expected along the way, like private college tuition and such. And, um, so where I was working at the time wasn't cutting it. And professionally, I'm a lawyer, and I originally from New York and I started my career in New York and and professionally and financially, the only wayto make it work and get all the bills paid was that I relocated back to New York to be a New York lawyer again. And, um so I spend almost all the year in New York. Rachel and Laura spend most of the year in California. I get out there as often as I can. Uh, birthdays, holidays, things like that. And, uh, we and thankfully, we live in the age of face time.

spk_1:   3:35
I think we're basic something. Where were you living when decision to go to college in California happen Because it wasn't in California.

spk_0:   3:41
We live this weird try Coastal existence. We lived in California for about a dozen years, and then, for various reasons, we picked up when we moved out to Hawaii, where there is still a house where I pay the mortgage and my wife and my wife and daughter get back there on school breaks. And if I'm lucky, I will get to spend a week or a week and 1/2 there every year. I was living in loitering in Hawaii at the time, and, uh, why is a glorious place, but in certainly in the legal profession, you don't earn out there. What? You were doing the same thing in a major mainland market like New York. So, uh, the loitering in Hawaii just wasn't covering the bills just when it became clear that that Rachel was gonna be able to go to college. But no matter what, I was gonna make too much for her to get any meaningful financial aid. Uh, so just the numbers didn't pencil out anymore, So I had to pick up on, go someplace where they did, and that was back to New York. But, you

spk_1:   4:48
know, in a way, I think it's it's kind of a joyous burden. I mean, who would have expected that Rachel would go to the university, right and come out with a degree?

spk_0:   4:54
We certainly would not have planned for the family to end up in very different places like this. But But when? When it became clear that Rachel was gonna be able to go to college then, you know, I mean, we always viewed our job as you do what parents do, which is to do whatever you need to do to give your kids of the opportunities, um, you know, to maximize their abilities. So that's

spk_1:   5:20
what I think. You're very fortunate you could do that. And so you know, it's a joyous problem to have when you can solve it, and and your your solution was extraordinarily creative. I don't think it would even occurred to me to do something like that, that sze terrific, and I can only applaud you for that.

spk_0:   5:37
Thank you. I will say it's a good thing that life comes at you one day at a time because it's easier to make these decisions one day at a time, as opposed to if somebody had opposed to us the day she was born here, all the things that you're going t to end up doing, you choose to choose to do all of these. That would have been a lot harder than just what we have to do today While

spk_1:   6:06
we're here. Let's talk about Rachel's early years. What was it like long before college was an option

spk_0:   6:11
she was born in in New York. She's very proud of telling people that that she and I were both born at the same hospital in New York City, a Mount Sinai hospital. She was 4.5 months old When we moved to California. We moved to California. I took a job as Ah is the lawyer at the Walt Disney Company And so she really grew up in California. She grew up. She moved from Manhattan to Manhattan Beach very early on. We kind of learned as much as we could and figured out sort of what she would benefit from in terms of therapies, early intervention, things like that. And we got her everything we could. Sometimes that was easier than others. Sometimes that was that was radically difficulty. And along the way, we hired. Notwithstanding that I'm a I'm a lawyer. We hired an education rights lawyer who whose presence was critical at certain times. But from from the beginning, we insisted that Rachel be fully included with in the General Ed classroom with typical kids. And I think we get to say that that was the right thing to do.

spk_1:   7:23
Let me ask you this. You're separated by 3000 miles. You know, Hawaii to the side. You're still in New York and they're still in California. How do you make your marriage work like that?

spk_0:   7:32
It's the same thing about, you know, getting up every day and handling handling what life throws at you today. Uh, it's Listen as as you know, um, you've also been married a while, married for years and counting. You know, marriage is a lot of work and, um, end at different times. It's different kinds of work of I think there are probably times that that my wife and I would both agree that it may actually be easier on us that we're not in the same place. That is other times when, unquestionably, we would rather be in the same place marriage of for all of us who managed to, uh, to stay married, especially over a long period of time. It's, you know, it's always a work in progress, but, um, we were I think we're in adaptable species, and I guess Laura and I are adaptable people. I

spk_1:   8:29
don't want to think of Down Syndrome is adversity. It is a sort of adversity. It's also sort of a joy. But do you think that centering your life on dealing with Rachel and helping Rachel that that's what sort of binds you together? Because I can definitely say that's what kept us really, really sell it

spk_0:   8:44
all those years? Yeah. Oh, absolutely. No matter what is going on with the rest of the relationship, it has always given us kind of this. This'll major focus and, you know, on any given day

spk_3:   8:59
we might or might not be agreeing about something. But God help anybody who is

spk_0:   9:06
was getting at our daughter's wedding

spk_2:   9:08
way forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's

spk_3:   9:26
many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify

spk_2:   9:36
I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

spk_3:   9:42
Join Music

spk_2:   9:43
Home Tonight Forever.

spk_4:   9:49
Hi, my name is Jaime Al Croft, and I just published my new book, The Tin Man Diaries. It's an amazing story of my sudden change of heart as I went through a heart liver transplant. I can think of no better way to read The Tin Man diaries than to cuddle up in your favorite hearts. Unite the Globe sweatshirt and your favorite hot beverage, of course, in your hearts Unite Blow mug, both of which are available. The Hug, podcast, network, online store or visit hearts unite theglobe dot

spk_2:   10:19
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in a 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. You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com Now back to our program.

spk_3:   10:54
This just in literally. You've got an email. Tell us what you just got over

spk_0:   10:58
the break. I told Michael that my daughter Rachel is in the process of applying to M F programs Master's fine art programs for which the programs require students to interview. And most of the applicants don't necessarily get interviews. So she just got an email inviting her to interview at N Y. U. Congratulations, man. Thank you. Which is a big deal. And to boot and why. He was also where my brother went to college and where later on, my mom actually worked for 10 years. That's some pretty great news.

spk_1:   11:32
And of course you'll be in the same state. You'll be in the

spk_0:   11:35
same house. She's not accepted yet, so I know, I

spk_1:   11:38
know. But if she is, look, look at the possibilities. Absolutely. That's great. We're going to switch gears very heavily right now. I want you to talk more about about your brother. Now, tell me about the day you found out that Mitchell done.

spk_0:   11:49
I waas a junior in high school, and at the same time, I was attending a the Hebrew High School, continuing my Jewish education, the principal of the school who was also the director of the camp program, that at which Michael and I met. I actually came to the class and fetched me out of class, drove me back to my parent's apartment. My father was out of town. He was in Florida visiting his brother, and my mother was there. All I was told in that car ride was was that there had been an accident. But when I got to the apartment, my mother told me that Mitch had died in a car accident in Israel, and over the next hours and days, I learned more about it. There is no good age at which to lose anybody close to us. But when you're a young person, I think, you know, up until that point, I still had that gleeful ignorance of mortality that, you know, we all felt like like we were I'm gonna live forever then and that's that's a heck of a way toe. Learn that it's not So

spk_1:   13:07
you somehow expected It only happens to older people.

spk_0:   13:11
It was profoundly disruptive and life changing. And, you know, I still live with. And

spk_1:   13:19
yet, you know, just a few months later, you were at camp, and I and I was late to camp because I had been in Israel at the beginning this summer. Ah, and I can't remember that you were outwardly different. So let me ask you the question 17 years old is you're no longer a kid. You're not quite an adult. So how did that loss affect you in ways that maybe we're not thinking about those of us who knew you?

spk_0:   13:47
As you said. Indeed. Um, so much died, Uh, early April. And then what? The end of June, I guess we went into camp and off I went. I didn't know how to talk to people about it. In recent years, I've had a, um, high school reunion and I remember talking with some people, and I I asked them because I absolutely, really I remember very little kind of of the immediate aftermath. Um, I asked them if they knew and if if I had told them what happened and they didn't know which probably meant that I didn't tell people. It's just so over the years, I got very good at not announcing this because it's, you know, especially at that age. I mean, kind of even now, um, our our culture certainly does not teach people how to talk about death, but certainly at 17 you know, if if it came up in conversation, it was just an immediate conversation killer and everybody just felt very sorry and very awkward. And people

spk_1:   15:00
with nobody has had to deal with it. That it I mean, you have to, but your friends felt that maybe they didn't. On the other hand, I knew it happened because my brother was there and in Israel on the same program, I came to camp. I don't even think I said I'm sorry. I just looked at you, like, you know, home improvements. I kind of And you just kind of, uh and it was over, and that was it. But I didn't realize that other people didn't necessarily know. And I didn't see you as far as I can remember. Now, looking back from age 62 17 I don't remember you being outwardly any different about it. And at some point, I stopped giving it any kind of thought because it didn't look like you were there. It just passed over as a normal, normal thing. And I think really, what happens is that, you know, trauma sometimes has its way of hiding to come out at a better time. Did he hit you harder. Maybe after hands after the summer.

spk_0:   15:52
I think it did hit me pretty hard, but, um uh, so at camp, as as will tend to happen. I got into a relationship and I had a girlfriend who was very, very, very special to me at the time. And, um, I'm pretty sure that I opened up to her. Ah, lot more about this stuff than I did to anybody else. I spent a lot of time just with her that summer. And I think that she and that relationship really help me hold things together. In a way, I'm sure it would have been a lot harder for me had I not had that. So I did have, you know, another year before going away to college. So by the time, I mean, it's certainly something that my parents and I talked about. They would have been happier had I stayed home for school. But at the same time, um, they I had, you know, a great opportunity to go to BRANDEIS. And my parents were all about, you know, seeing their kids achieved through through education and and also say and looking back I know, I know. I didn't I don't think I fully appreciate it at the time just how difficult it was for them. But they managed to muster themselves together enough to say yes. Absolutely. Go and do and just call us more often.

spk_1:   17:35
They would have said that. Anyone? Yes. Yes. You don't call? Yeah. Hey, what's up before we go to break here? You told us earlier in a pre interview that your daughter is named for your brother.

spk_0:   17:47
Middle name's Mitch is full. Hebrew name was shallow. Mikhail, Phoebe and your army. El Halabi, but conversationally Mika l okay, Rachel's middle name is Michael on dhe. And yes, if we get if we were to get into the Entomology, I'm sure that that you are others could tell me how they're really The derivation of the two names are actually different. But but, um, I

spk_1:   18:15
have a feeling exactly the same because my name is Michael and Michael means Mickum, Ohio, who is like God, Right. And Mikal is just a shortened version of that. They're all the elements in that as well.

spk_0:   18:27
Well, that that was. Anyway, that was the thinking. So So her middle name is Michael and specifically chosen because he was Mikhail.

spk_1:   18:36
Does she show anything in her life that reminds you of him?

spk_0:   18:41
That's a really interesting question that I don't know, that anybody has ever asked me, uh, when she decides to do something, um, she is relentless, tireless in its pursuit, and and he certainly waas and again in very for very different reasons. Um, he did growing up, have some difficulties, mostly socially, which actually was She's a very, very social kid, but he had to work harder at certain things. That many things then then most of his peer group did, and she certainly has. And again, I think I think both of them just set their minds to something and nothing. And nobody, you know, stood

spk_1:   19:38
in their way. Well, I would say from having read his bio that her her quest for education and his desire for education, although there may be in different areas the drive, I think, is very much the same. And I and I like that because, um, you know, in Judaism, name isn't just the name, it's who you are, defines the person. And so you called him righteous in his name means who was like God and Mikhail was an angel. So she seems to have that same drive that he had and the name could be very important there. When I really, really appreciate that,

spk_0:   20:18
I appreciate your take on that which, frankly is is, is broader and deeper than probably ours was, uh I like to think you have that right, And I One thing I know absolutely for sure. And I have told her

spk_3:   20:34
this many times is that I know that he would be enormously proud of her.

spk_4:   20:41
I was five hours old when I had my first surgery.

spk_2:   20:44
The only advice I couldn't really give someone like

spk_3:   20:47
that is to be there for your family.

spk_4:   20:49
This is life and you have two choices. You either live it. Are you in a corner and cry.

spk_2:   20:54
I am in a Gorski and the host of heart to Heart with Anna. Join us on Tuesdays at noon, Eastern time on Speaker R Block Talk radio will cover topics of importance for the congenital heart defect community. Remember, my friends, you are not alone.

spk_3:   21:11
If you've enjoyed listening to this program, please visit our website hearts, Unite theglobe dot or GE and make a contribution. This program is a presentation of hearts unite the globe and is part of the Hug Podcast Network Heart. Tonight, the Globe is a nonprofit organization devoted to providing resource is to the congenital heart defect community to educate and power and enrich the lives of our community members. If you would like access to free resource is pertaining to the CHD community, please visit our website at congenital heart defects dot com for information about CHD hospitals that treat CHD survivors summer camps for CH two families and much, much more.

spk_2:   21:50
You are listening to heart to heart with Michael. If you have a question or comment that you would like a dressed on our program, please send an email to Michael even at Michael at heart to heart with michael dot com Now back Toe Heart to Heart With Michael

spk_3:   22:06
J. Many people who have a child

spk_1:   22:07
with special needs to go through a period of grief morning after the perfect child they were supposed to have isn't there? On top of that, you lost your brother when you were a teenager. So how much of that has come together to help define you as you are now?

spk_0:   22:21
People talk about about formative events in your life, and it is it. It would be harder for me to think of anything else in my life, including with 11 respect to my wife, our marriage, um, anything more impactful in my life than Mitch's death and Rachel's birth and and in particular, um, Rachel being born and lo and behold, she had she has down syndrome, which we didn't know about before she was born and kind of everything that has everything that has flowed from that. So So, yeah, those were those were two enormously life changing, life shaping things. It would be a shorter list of things where that hasn't impacted my life. I mean, it's just I don't know. I have no idea who or what. I'd be absent those two things. I'd be somebody completely different.

spk_1:   23:30
That reminds me, my daughter in among all the other issues that she had, she was also a heart patient. And I remember in the earlier early days of the Internet, when we were all on list serves and were trading emails back and forth every day, somebody asked the question. If you could wave a magic wand and erase the heart condition, would you do it before? I ask you your answer to that question, let me tell you that a number of the parents said no, we wouldn't, because if you change my child's heart condition, if you leave my child healthy in a way that we didn't have, you would change everything. Is who's as to who my child is? And by extension, who I am and that my child is defined in some sense by what my child has and that defines me so we could wave a magic wand and take away down syndrome. What would you

spk_0:   24:27
That's you're not the first person to ask that. And but But even having heard the question before, I don't have a good answer for it. Um, well, there is no right answer, Okay? No, no, no, no. I

spk_1:   24:37
kind of set you up to fall there. There's no right answer. And some people would gladly give it away and have a child back without it. And, Well, let's be clear on that.

spk_0:   24:45
No, But so on the one hand, what a parent's wish for their Children, right? I I would I would wish for things that make her path smoother. Easier? Um, I would wish for her that she didn't have to work harder than everybody else to learn the same stuff. But it is fundamentally intertwined with who she is without the extra chromosome. I have no idea who she would be. I have no idea if her personality would be anything like what it is now. I just don't know in many, many respects. Um with struggle comes growth. Uh, so

spk_1:   25:31
no, no. Let me help you out there with something because you said it struggled, brings growth. And I've always said as a parent, having a child with special needs showed us who we could be. But I think that it also works on the child. I think that Rachel has become what she can be to the best of her ability. And maybe we don't even know where that limit is yet, right?

spk_0:   25:53
That's absolutely true. Now I

spk_1:   25:55
tend to agree with you. I'm I'm sort of in between on that question, but I'm sort of more with the people who would not take the magic one. It's it also as much is it to find her to find you. Look at you. Look what you're doing. You are living bicoastal, and you can do it because the drive to do it is for her final question knowing what you know now. And if you could talk to 17 year old J,

spk_0:   26:20
what would you tell him? Two things occurred to me. Number one, particularly that that first summer right after Mitch had died, I would tell 17 year old J to be more mindful of his parents. And just because I had managed to sort of get away and find this this haven that let me gather myself and and recover a little bit and all, um, I I did not adequately recognise what they were going through and how unbelievably traumatic losing him was to them. And I was really, truly I was I was so caught up with kind of saving myself that I did not focus enough on them and how hard it was for them. And as a result, you know, you joke before about how parents and particularly the you know, the classic Jewish parent or Jewish mother will say, you know, you never write, you never call. But really, truly, with the benefit of hindsight, I could and should have been much better to them, much more solicitous of them and what they were going through at that time. And I wish I had I like to think that that in subsequent years I did a better job. Uh, but right then I was I was really kind of swallowed up in my own thing, and, uh, I wish I had done that better. That's number one number two. I would probably tell myself, um, overtime to give myself a little bit more of a break. For a long time I had this this notion that I was now in my brother's absence, that I was kind of living for two people, that I was responsible not only for myself but for uhm filling in the gap that he left in the universe. And and, I mean, that's not a fair burden to put on anybody. And it's certainly not a fair burden to put on a kid at 17 or 18 or 20

spk_1:   28:47
or whatever. Let me give you some advice is apparent. Who lost a child? Your parents knew what you're feeling. They knew that you were healing yourself. They might have felt that they were a little disconnected from you. And they forgive you?

spk_0:   29:04
Yeah, I think I think after that we all did a pretty good job. Um, being good to one another to help us all home. All

spk_3:   29:16
of us together. J Thank you so much for coming on the program. Thanks, Michel, that this has been pretty great. Thank you. That concludes this episode of heart to heart with Michael please join us at the beginning of the month for a brand new podcast. Please take this opportunity to go over to Patriot and become a member of the heart to heart team and help support this and other programs. I'll talk with you soon, and until then, remember, moving forward is not moving away.

spk_2:   29:42
Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to heart with Michael could be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share more stories.