Bereaved But Still Me

Losing a Son to Cerebral Palsy

March 03, 2022 David Blier Season 6 Episode 3
Bereaved But Still Me
Losing a Son to Cerebral Palsy
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Show Notes Transcript

How can a father deal with losing a son to cerebral palsy? What does it mean to have cerebral palsy? What advice does a father of two sets of twins have for others who have premature babies with severe birth defects?

It’s extremely difficult to have a child with a chronic illness.  It’s especially difficult when we lose a child, even when it is a child who was born with a chronic illness. It seems somehow unnatural for a parent to bury a child.  So how do we, as parents, cope with that moment?

This month's featured Guest is David Blier – the father of four; two sets of twins. David’s first set of twins were born at 31 ½ weeks – which is not actually considered premature for twins. One of the twins, Lucas, was born with cerebral palsy and his condition was very severe. Lucas couldn’t eat or speak but he could laugh and cry. He couldn’t sit up or walk, but he was able to move with the help of a wheelchair. He was totally dependent on others. For the last 13 years of his life he lived in Mercy Homes. Sadly, at 23 years of age, he passed away after complications following surgery.

In this episode, David shares with Michael what it was like having twins, especially some of the challenges they faced, as well as how the children grew up and the difficulties they faced as they aged. Additionally, David and Michael talk philosophically about some of their beliefs and give the Listeners some insight into how bereaved fathers think and feel.

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David Blier:

As a Christian as someone who believes in heaven, I know that Lucas is whole. He's living my dream right now he has eternity to be home. So this blip of a period here was tough, but my dreams have finally come true for him.

Michael Liben:

Welcome to the Sixth Season of "Bereaved But Still Me", our purpose is to empower members of our community. I am Michael Liben and the father of three children- Idan, Sapir, and Liel. Liel, my youngest daughter, was born with a heart defect, and later she developed autism and epilepsy. Losing Liel at fifteen is what has brought me here to be the host of this program. How can a father deal with losing his son to cerebral palsy? What does it mean to have cerebral palsy? What advice does a father of two sets of twins have for others who have premature babies with severe birth defects? Today's episode is called"Losing a Son to Cerebral Palsy". It's extremely difficult to have a child with a chronic illness. It's especially difficult when you lose a child, particularly that child who had the chronic illness. It is somehow unnatural for parents to bury a child. So how do we as parents cope with that moment? Our guest is David Blier, the father of four - two sets of twins. David's first set of twins were born at 31 and a half weeks, which is not actually considered premature for twins. One of the twins, Lucas, was born with cerebral palsy, and his condition was very severe. Lucas couldn't eat or speak, but he could laugh and cry. He couldn't sit up or walk, but he was able to move with the help of a wheelchair. He was totally dependent on others. For the last 13 years of his life, he lived at Mercy Homes. Sadly, at 23 years of age, he passed away after complications following surgery. David, welcome to"Bereaved But Still Me".

David Blier:

Hey, thanks for having me, Michael.

Michael Liben:

Why don't we just get started right away talking about your children.

David Blier:

For the first set was identical twin boys and they are now 26 years old. I'm divorced from my first wife and my second wife and I had twins as well.

Michael Liben:

How lucky!

David Blier:

Yeah, just I know how to pick 'em. They're boy/girl twins, and they are 20 years old and in college now. So each of them were premature. I mean, 31 and a half weeks is not really all that premature. Still, they were in the NICU for a month, and had several issues there. The youngest set were 27 and a half weeks, so they were quite a bit more premature and lots of NICU issues there. But they came home at different times and we've dealt with stuff there as well. The second set are JD, James David, and Sarah.

Michael Liben:

I'm trying to imagine what that must be like, my wife is a twin. My wife was so anxious to have more twins after she was a twin. Well, I can't even imagine what that must be like to have two sets of twins, everybody needing you all at the same time. And two of them with special needs. How do you control all of that? Can you control all of that?

David Blier:

No. Quite, quite frankly, right away.

Michael Liben:

I'm thinking organized chaos.

David Blier:

There is no control. No. But honestly, under normal circumstances, I've talked to a lot of parents of twins and the first six months is complete chaos because you have to do everything. But once they actually get to where they're crawling around and walking, they actually start playing with one another so, I've been told, I've never had one child at a time, but I've been told that can be really nice because they keep each other occupied a little bit.

Michael Liben:

I know my wife and my sister in law developed a language between them over time. So they would say things that nobody knew what they were talking about there. But they were fine.

David Blier:

Under our circumstances, though, we didn't get to experience that either, though, because Lucas just didn't develop. So Andrew still didn't have that partner he could kind of do that stuff with and that's where this story kind of begins with him.

Michael Liben:

Well tell us a little bit about that. Because that's something that most of us probably don't know very much

David Blier:

To start though, I'd probably have to back up and about. go to their NICU stay. There was 55 minutes between the two of them births and that's pretty abnormal. Yeah. And they took Lucas away right away. I didn't see him. I didn't know what was going on. I've never had kids before at this point. So I'm just thinking, okay, and later on, I found out that they didn't show any brain activity. And so my ex wife was not doing well either so they had her kind of off to the side. And I went in and was trying to deal with that on my own. Lots of things happen, but they go home, and everything seems fine. So we're thinking, okay, we have two normal babies now. And when we get home, they just basically lay around so there's not a lot of brain activity anyway, you just do everything for them, like I said, But when Andrew started to rollover Lucas didn't. And when Andrew started to crawl, Lucas didn't. And so we started having him followed by early intervention, I guess it was around a year old that we really discovered that he had what they would call cerebral palsy. Cerebral Palsy comes in many flavors and in his case, it was very severe. He couldn't do anything on his own.

Michael Liben:

It takes a year to discover that?

David Blier:

No, it doesn't, sometimes it might go farther than a year, sometimes it might be a lot quicker than a year, we knew something was wrong. We just didn't know what. And we didn't know what the future would hold for us. Along the way you always think, well, maybe this will just be something that he struggles with early on, and then it'll get past it. And you know, in the beginning, you have dreams that he might go to school, he might need a little help. Then we start talking about cerebral palsy, you start hearing that there's people who can walk a little bit different, but they get around and they're brilliant. And you don't really know what the future holds at that point in time.

Michael Liben:

To make it more critical for you, this is your first time out being a father. So everything is just the way things are. You don't have anything any personal experience to compare it to. I won't ask you something else we learned earlier in the pre interview that you have a very complicated family history. Do you want to share about that background a little bit?

David Blier:

When you get married you think that's for forever? And, and for me, it was not. And so there were a lot of struggles, Lucas being one of them. It puts a real strain on a marriage. We were married for about seven and a half years. We had the twins, about four years into that. And we fought a lot we dealt with those kinds of things, we had Lucas's issues. And Andrew seemed to be typical or normal. I'm not sure I know what normal or typical really is. You know, having four kids not one of them's the same. And then we get divorced so that was a struggle. Then I met my current wife, Janice, and, and my last, very happy we've been together 21 years. And she was a little older when we got married, and we decided not to try to keep from getting pregnant so we got pregnant right away. We did have a miscarriage, that was something I dealt with there. But then we got pregnant again and it was JD and Sarah, the twins. And they were born very early. JD spent three months in the NICU and Sarah spent two months in the NICU. Out of that set of twins Sara is what they call the normal typical. And yeah, and JD has autism. So he's very high functioning autistic. That's a whole separate set of things that we deal with. Yeah, that's a little bit about my complicated family history. I don't know that you want every complication I have in my life, but...

Anna Jaworski:

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

Michael Liben:

David, we learned earlier in your bio that Lucas was born with cerebral palsy. But he's not really the one that you were worried about before birth, tell us more what was going on and who surprised whom.

David Blier:

My wife had ultrasounds and twins and there was complications. So we were worried about Andrew, they call this thing that we were seeing twin to twin transfusion. And what happens in that case is one sack will fill up or get more fluid than the other. And because of that, the twins whose sack is not filling up, he becomes what they call stuck. And if you don't do something about it, they lose these children. Luckily, we were living in Nashville, we have some of the best surgeons, best doctors in the world. And they were doing this procedure that wasn't even approved. But they said you know it's not approved, but we keep getting babies that live. So we gave him the approval and they did this. What they would do is they put us in the hospital, we, my wife had to go in probably four different times during the pregnancy. They would basically put a big giant needle and drain off two to three liters of fluid. So think about that - the size of a two liter bottle of Coke. They would drain that amniotic fluid off so that Andrew's sack could fill up and he would be okay so when they were born, we were always worried about something being wrong with Andrew. He seemed completely fine; the problem was with Lucas.

Michael Liben:

We also learned that Lucas, after he was born, there are a lot of things that he wasn't able to do. So was he separated from his twin brother for quite a long time?

David Blier:

Not at all. What's very interesting was the NICU stay was not abnormal. So Lucas in the beginning, they told us he was gonna die. So we were preparing ourselves that he only was going to live a few days, we had him anointed at about six, seven days in the NICU. Pastors came in and anointed him. And I'm telling you within 13 hours, the next day, I came back, and I was like, where's Lucas? They said, he's over in step down. And I'm like, "You're kidding me." And they said, "No, he's, he's doing great." He's eating, you know, he's doing all this stuff, so this is a total miracle. And then from that point on, he seemed to do just like you would expect in the NICU. It was when we got home, that we started to realize and Andrew and Lucas were always together. So matter of fact, they even put them in the same crib area, when they were in the NICU. They've been together for forever. While Lucas was living at our house, they slept in the same room. Because of that, Andrew was a - I'm telling you to this day, I think he could sleep through a bomb. Because Lucas had music going all night to keep him calm, and all those kinds of things. But as far as Andrew goes, it was a struggle for him when he was younger, he oftentimes asked me things like, Dad, "Why did this happen to Lucas? Why not me?" As a parent you're like, "Oh, gosh, I don't know son."

Michael Liben:

What do you do with that moment? Do you lay it out on God? What do you do? How do you how do you get through that? You got through it, so tell us how you did it.

David Blier:

I don't lay it out on anyone. I tell them that the reality is that bad things happen. I'm not someone who subscribes to the fact that there's a reason for everything. I think we live in a fallen world and I think bad things happen. And sometimes we can learn from them and we can see the good. But usually it's in hindsight, not until after you've actually had some time to sit and think about it. I'm honest with him. I said, "I don't know, son, but I can tell you this, that you need to be happy that you are whole and you need to help Lucas live through you" because there's a piece of each of them in each other.

Michael Liben:

Did you find that as they get older the healthy brother was taking on responsibility? Now that he's an adult, do you think that the way he is today is somehow informed by his helping his younger brother when he needed it?

David Blier:

Oh I think so. Absolutely. Andrew is a great kid. He's got a great heart. He's also gone through his rebellious teen years. And you know, that's good. And then he scared my wife half to death when I was actually out of town and he came to her when he was 15 years old, and said, "Mom, I've decided I want to be a Marine." Every every parent's dream that their child just go into the most difficult branch of service where I know they're gonna really push him to the end. And he did that, when he puts his mind to it, he can do anything.

Michael Liben:

So he became a Marine?

David Blier:

He did, he became a Marine. He spent some time in the Marine Corps over in California, he went to Japan on a what they call a MEU, Marine Expeditionary Unit. He's doing fantastic now he's got a great job and he has his own home and rental property and those kinds of things. So I'm real proud of him but he has a real heart for for people who are less fortunate to just connect with and help those that are that are in need and I do think that came from having a brother with severe issues.

Michael Liben:

I'm glad you said that, because I see that in my own kids today, I think they're marvelous adults. And I think one of the reasons they're marvelous adults is because we maybe robbed them a little bit of their childhood, but they were there earlier than you would expect to help. And to do things for and with Liel which she needed done. And to take some of the pressure off their very overly burdened parents. And so I think it's true. Kids grow up to be more responsible. It's not really surprising in that context that he went to what maybe one of the most responsible positions in the military. He went on to become a Marine.

David Blier:

And there's a lot of kids his age that did go into the military. And if you think about it, there's a good reason for that; 9/11 happened when they were six years old. So never, never knew time without those things going all the way to see someone off at the airport at their gate. You know, those things that, yeah, he's never seen that.

Michael Liben:

I've learned earlier from speaking with you privately that in the NICU when Lucas was on the warming table, and nobody really knew what was going on with anybody yet that you prayed for him. And you want to talk about that? Because I know that weighs on you.

David Blier:

herself. And so I went home and went to sleep, turned my phone off and everything. And at about 130 in the morning, my parents show up and banging on my door. And I come out of a stupor and come out there and they say, "David, we need to go to the hospital." So they had gotten in touch with them, because they couldn't get in touch with me, Lucas, they didn't think was going to make it through the night. And so just weeping, weeping, they drove me to the hospital, because obviously I was a wreck, I would never have made it. But while we were in the car, I was just praying as hard as I could, that God would spare Lucas, and save his life. And, you know, it just, I just kept saying,"Anything we have to deal with anything, I just, you know, I want him to live." And he did. He did, he had a complete turnaround, as much as we can see at the time, and over the years that has weighed on me pretty bad, because I've had the thoughts in my head of maybe I shouldn't have prayed that. Because his life was a struggle. You know, he couldn't sit up for himself. He couldn't eat for himself. He had, he was fed through a G Tube, he couldn't communicate, he could laugh, and he could cry. Those were our communications with Lucas. And he did both of those, and they were appropriate. So that was, that was a great gift, at least,

Michael Liben:

On the question of praying for a child, I think most parents, the first thing they would do is, is exactly The question is, I think maybe after the fact you worry about, what should I have prayed for? I was concerned with my daughter having a safe trip to the other side. I wasn't asking that she be revived because I knew that it just wasn't gonna happen. And if it did, it would be terrible for everybody, including her, especially her. So that's the thing that people worry about. It's a very natural reaction. And you know what? That's a really good question. So you asked for him to be saved and you asked for him to live. And he did. But do you know for a fact that that was in response to your prayer? Maybe he just lived? And maybe he lived for that. purpose? I don't know. I have trouble with that. Because I

David Blier:

Yeah. don't think that God would create an imperfect child to teach other children. I think people can learn from that. But I'm not sure that's why it's done. Yeah. And I don't think that now, I'm just

Michael Liben:

If you've enjoyed listening to this program, reporting how I felt at the time. I had 23 years with Lucas to deal with that. And I got past those failings, and I please visit our website, heartsunitetheglobe.org and make realized that I choose to look at the positive that I had 23 years with my son, and that this 23 years on this life was just a blip. It was just a such a short period, I dreamed of Lucas being whole, I used to have dreams all the time about him walking around. And it was the most wonderful thing to ever even contemplate. But the reality is, as a Christian, as someone who believes in heaven, I know that Lucas is whole, he's living my dream right now he has eternity to be whole. So this blip of a period here was tough, but my dreams are finally coming true for him. So when we talk about him passing away, it's not a contribution. This program is a presentation of Hearts Unite actually a sad thing for me. It's a it's a wonderful thing. the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at congenitalheartdefects.com For information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more. David, as we like to do here, from time to time, we're gonna wax a little philosophical. We've both had a number of decades of dealing with children with special needs, what have you learned about yourself and who you are

David Blier:

Oh my gosh. What I've learned about myself is, as from this experience? we said earlier, I can't control everything. So as a younger person, I used to try to kind of grab control and predict things and plan my life around it that way. I don't live my life that way anymore. Other things I've learned, I don't know that I've learned so many things about myself but I've learned about how to live a good life. When you have a child with special needs, I think it's super important that when someone offers to help that you accept their help. Oh, yeah. And there's a lot of people who will do that, and sometimes they're serious and sometimes they're not. For me, I have no problem accepting help. The other thing I've learned is my wife and I have really been intentional about carving out time for ourselves. And we take vacations with the kids, but we take vacations without the kids. And again, when they were younger, that required us to lean on other people for help. In my church, we have a great support system. And we have people that have been willing to do that with us.

Michael Liben:

What do you tell people now who are about to go into something this big?

David Blier:

Oh, gosh, really, in the beginning, they're so shell shocked. It's hard to counsel them on on many of the things I've learned other than to say, "You know what, you're not alone." If I can get them to understand that they are not alone, and that I truly have been there that just be in a listening ear to them sometimes. And it's okay for me not to talk, just to be there and listen. As they're talking, obviously, it'll prompt me for things to say so each situation is different. When I'm talking to someone about what's going on in their life with their kids. Sometimes, if it's a child who's very similar to mine, I will I will talk to him about maybe some organizations that can help them. We have one called TEIS here, it's Tennessee Early Intervention Systems. And they help with schooling, they help with therapies, they help with those kinds of things, and maybe just some actual real world advice I can give them on where to go for services. Lucas went to a very special school and not everybody knows about that. I have helped a lot of people with this might be where you ought to check out, which is a tough thing. Because, as I said, if you're looking at, oh, maybe he'll get past this, and he'll be able to go to a school. And the reality is no.

Michael Liben:

This is difficult for the children who are in these situations. But how difficult is this for a parent to come around to understanding what he's got? You know, nobody wants this, right. But we get it.

David Blier:

It's extremely difficult. And as you know, the thing is, is that you're like, you can get caught up in worrying about, what's it gonna look like when he's this old, how's it going to be changing a diaper when a kid is eight years old? 13 years old? I've done that. It's tough. You don't tell parents, you don't talk about those kinds of things with a parent that's got a three year old, they don't need to be even thinking about those issues. You just got to take it day by day. Otherwise, you're gonna go nuts. Some of my experiences I'll save from, from even sharing with someone that's, that's new, because the reality is, things are gonna unfold at a certain rate. Yeah. And I don't want to scare him to death, either. Not that it's not something we can all get through. You just cannot sit there and contemplate all of those things.

Michael Liben:

I think you're right. I think there are things along the way that we discovered that other people knew but didn't tell us, right? I know that in epilepsy, we had to deal with the sudden unexpected death in epilepsy. It's got a name, SUDEP, people know about it. And somebody recently asked me if we could have told you about that, would you have wanted to know? And I'm thinking, well, maybe not. Because there's nothing I can control. And I had these long rides with her bringing her home on weekends. I'm in the car with her for two, three hours. And it's some sort of thing that could happen or not happen at any moment. Why put that on somebody? I think you're right. I think you're right. Why do I do that? Yeah. Now, I'm gonna ask you a tougher one. Hindsight being 20/20, if you could go back and talk to David 25 years ago, what would you tell yourself?

David Blier:

Well, I would tell myself, for sure not to try to control everything and to take things one day at a time. And also to slow down. My tendency is to overwork myself and over overthink things and to try to plan ahead a lot of times. So I would tell my younger self that but honestly, I've done a lot about going back in time would I do something differently? And the best way I might be able to explain how I feel about that is me giving advice to my own children. And there's been so many times where I've wanted to keep them from the heartbreak, the failures that I've had in my life that I'm just would love to be able to keep them from having to experience the same thing. But the reality is, if I look at my own life, and I look at those failures and I look at those struggles, those are the times that I have grown the most, and learn the most, and progressed the most toward being a better husband, a better father, a better businessman. And so, you know, obviously, my kids might, quote unquote, typical kids, when I tell them these things, and they do them anyway. And they get in trouble, or they fail at something and I just have to look at it and laugh and say, yep, unfortunately, you can't keep him from learning the hard way. But also, I don't...

Michael Liben:

So true.

David Blier:

I don't know that I even want to keep them from learning the hard way, because I think it's the best feature.

Michael Liben:

Just before we close, I have to say something, I think, and I've known you now a little bit, I think you are a really typical parent and by that I mean, wonderful, amazing,, fantastic. I think...

David Blier:

Sometimes I feel that way. Sometimes I don't.

Michael Liben:

Well, we all learn from our hardships. And maybe sometimes we should say thank God for the hardships. I know nobody wants them but they're the moments will be learned and they're the moments when we change for the better and then in the moments when we grow. So David, thank you so much for coming on the program and sharing your experience and your advice with us.

David Blier:

Thank you.

Michael Liben:

We'd love to have you back.

David Blier:

Oh, I'd love to. I'd love to come back anytime.

Michael Liben:

That concludes this episode of "Bereaved But Still Me". Thank you for listening today. I want to thank David again for joining us and for sharing with his wisdom and his advice. I hope you can all be with us next month when we have a new program. And please until then remember moving forward is not moving away.

Anna Jaworski:

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