This SFN Podcast is a compilation of excerpts from earlier interviews of SFN Mentor Fathers who each lost a child with special needs. They are listed here in alphabetical order. The number relates to each dad’s podcast: #66 Jerry Castro/Son Jack age 15, #31 Kris Kazian/daughter Lexi age 2, #57 Tim Kuck/son Nathaniel age 4, #64 Shane Lee/daughter Jocelyn age 4 1/2, #37 Matt Mooney/son Elliot age 99 days, #13 Jim Mueller/son Luke 23 and #29 Rooster Rossiter/daughter Ainsley age 12. Not all families are able to perpetuate their child’s memory in the form of a non-profit, but many of these families have. Here are the names of and URLs related to the charities:
Helping From Heaven/Lexi Kazian Foundation – http://helpingfromheaven.org,
Nathaniel’s Hope – http://nathanielshope.org,
99 Balloons – http://99balloons.org, and
AinsleysAngels – http://ainsleysangels.org
Dad to Dad 89 – SFN Mentor Fathers: Reflections On The Loss Of A Child With Special Needs
Tom Couch: It’s often said that a parent’s worst nightmare is to lose a child. The special fathers network has been talking to dads. Who’ve lost a child with special needs. In addition to the grief and finality of their child passing. They’ve also had to endure the challenges associated with their child’s diagnosis.
I’m Tom Couch. And on this dad to dad podcast, we’re going to hear a compilation of dads whose children left them way too soon. We’ll hear highlights from David Hirsch’s conversations with Jerry Castro, Shane Lee, Chris Kazian, Jim Mueller, Tim Kuck, Matt Mooney and Kim Rooster Rossiter. These super inspirational excerpts serve as a stark reminder to appreciate life’s moments as they happen.
So now let’s hear from these special folks.
Special Dad: So right away, I felt the Jack was teaching something first and foremost. We didn’t know if she was going to live and you really start appreciating time. You really understand how many minutes a day and there’s 1,440 minutes in a day. And you really, really understand the value of time. Now, if we finally ended up at the university of North Carolina’s children hospital, Pediatric neurologist gave us the diagnosis of a spinal muscular atrophy.
You know, I can remember to this day, we’re sitting at his desk and he slides a pamphlet across the table and he says, this is the diagnosis and take your daughter home and love her. She may not live to be two years old. Oh my God. And he’s stood up and he walked out of the room. And that was, that was it.
That was all there was to it. And we just kind of looked at each other and, you know, a gambit of emotions come over you and thoughts come over you. And you know, you just look at each other, you look at her and you’re just wondering, you know, who, what, when, where, why and how. I think my sister-in-law Lindsay, my brother’s wife when we were in the hospital, she said to Chris and I, you know, people like, like Lexi they’re in heaven.
And they, they looked down for parents that can provide the best life for that child or for them. And so Lexi chose you as parents. And I think that day was his little to me. Cause there was obviously at the beginning. Why, what happened? Why this, why did we choose this five? This happened a lot of self doubt.
You made that comment to me, it stuck to me obviously till today that she chose us. And that really changed my perspective. As a dad anyway, that she chose me to be her parent still have the problem with his kidney, not functioning hand. So one of the residents came in one night. And, and was wondering what to do when he put his, he put his hand in, this is true.
He put his hand in one water. Luke’s kidneys kicked in. They didn’t think they were going to kick in. So his kidneys kicked in and all of his fluids heat because they weren’t, he had all these fluids were just, his body had become, um, Inflated with, because he wasn’t passing any of the fluids. Uh, but it was that moment when the, when the, uh, the young resident put his hand in the water that his kidneys kicked in and he just peed.
And that was it. My gosh. Yeah. That was an amazing and tremendous moment. So, because we were there ready to let him go. And then we had surgery in Dallas, Texas, where the team. And that particular case. And this was when, when he was about three years old and the surgery went well, but he ended up getting pneumonia and he ended up being in ICU for almost 11 days.
And then when he rolled out of ICU, there was a nurse that was standing over my son’s bed and she says, there’s something about this boy. There’s just something about this boy. And we get talking and she’s of like faith and she says, can I pray for you? And we were like, or before kind of spiritually bankrupt, emotionally bankrupt, physically bankrupt, you know, just trying to care for a son.
And so she prays for us, but she doesn’t really pray for that. He’d be healed and go home. She prayed that his purpose would be fulfilled. And I thought, what an odd prayer for this little boy who doesn’t walk or talk or. Or eat with his mouth, but took note of, of the prayer and then kind of, you know, went on with life.
Sounds like it was prophetic or some foreshadowing to what transpired from that point. Well, that is sure what we believe. We believe that God in his grace gave us a glimpse though. We didn’t understand it at the time of maybe what our assignment would be. Uh, after his death. Wow. If you can remember back, this is in utero now, right?
Jenny is pregnant. What was your first reaction to learning about this trisomy 18 diagnosis? Yeah. Well, so when you are young and you were having your first kiddo and you experienced this unbelievable reality that I wish on no one. Which is, you know, you go to the doctors at this time and gosh, I mean, even if he hadn’t been healthy, you just don’t understand birth and you’re going to doctors and you’re doing all this stuff.
And with the diagnosis, like Elliot had you just, you get to this place where doctors are no longer giving you answers, they’re really continue to lead, you know, your questions instead of telling you things is more like. W would you like us to do with this it’s so that is just a terrible, fucking horrible place to be.
And so we became kind of crafted that and trying to figure that out. But I, I would say, say my first reaction and one that we haven’t moved past is just a complete and total grief, young having your first child, you know, this is, this is not the script that you thought it was going. And so there was the grief in that reality of that diagnosis.
And then honestly, the 99 days of his life, we. Absolutely loved. And that was absolutely the easy part. I mean, physically required around the clock care and we weren’t sleeping much, but man, we were, we were on board with each other, taking care of him. And then in the aftermath of losing him, just plunged back into that deep grief.
And you know, I’m quick to say, you know, I miss Elliot every day and I’m nothing. Nothing that I say moves me to a point where that’s not the case. We, we miss his life and we miss him just like any parent that loses a child does. So what were some of the more important decisions that you and Laurie made raising three children, including one with special needs.
I love that question because the answer is that we were going to live. We were not going to hide. We needed to make sure that, that our children understood that life’s going to throw you some challenges from here and there, but you just got to keep on keeping on. And we were not going to get ourselves in a position where we were like, not going to go out to eat as a family of five, because somebody might stare at Ainslie or pointer a wheelchair or something like that.
Rather, we were going to go out and be. Visible and be present and live because by God, that’s one of the freedoms we have as Americans. We’re not restricted to our actions. You know, we’re not told that you have to keep it is that person hidden. And then, because they’re not like everyone else, we have this amazing country with these amazing freedoms.
And as a Marine, I I’m going to live these freedoms to my fullest and ensure my children get to truly understand and experience. That blanket of freedom. So that’s what we did. We, we went places. We did things. We didn’t let it slow us down. We kept living. I love it. We also didn’t spend a whole lot of time trying to like.
Find the cure. And I, and I’m not, I’m not saying that people that spend their, I’m trying to find a cure for dystrophies or diseases. I’m not knocking them. I think that’s important. We need, we need to have some focus on that, but we knew in this moment that if we spent all of our time doing that, that we may not have any time to truly enjoy making memories with our family of five.
So, so we lived. There were so many challenges as you alluded to, and the pain associated with Luke’s physical issues, he would break down crying, you know, at times, and we couldn’t know what was wrong, and it was very hard to feel helpless in the face of all this. And we’d say, you know, Luke, what is it? And that became a common phrase with concern.
And we look into his eyes and try to figure out why I was up upset and, uh, Without hesitation, you know, we would start doing what we do. It’s just like programmed into us. We check his body for injuries. We reposition him, we lift him out of his chair over our shoulders to see if he had gas or just hold them in our arms and walk until he was quieted.
Uh, even as he grew older and. There were frustration times too, when he demanded that we stopped doing whatever we were doing, just no matter how important or urgent it was for us to take care of his needs. And sometimes we lost patients. You know, we raised our voices at times with Luke out of frustration.
And one of those favorite memories actually related to that is one time out of total frustration. One of us said, Jesus Christ, Luke, what is it? And apparently that was one of the funniest things he ever heard. He burst out laughing,
things got a little tense. We would just say that to Luke and he would laugh and we’d all fall asleep. I call it an amazing journey. And, uh, she changed not only our life, but she changed our family’s lives. Um, it was something that affected everyone. Everyone. I came in contact with her and our family.
They’ll tell you to this day that. She had an impact that changed our lives. Not only then, but forever. And I have testimonies of friends and family that have come to faith in Christ because of Joslin. Wow. I didn’t. And there’s you can’t, you can’t put that in words. I mean, that’s, if that doesn’t prove God’s existence, uh, I can’t tell you what does.
We have, you know, signs that Lexi is always around us. Uh, the number 11 is our, is Lexie’s number. She was born August 11th and she died at one o’clock in the morning. And so 11 minutes. So Eleven’s a popular number for a lot of spiritual or, uh, signs for folks, but, but a lot of them with Lexia and our kids are always sending us a note, Hey, I got table number 11 or.
Well, whatever it is. Um, so I don’t know. I think the grief process having a loss to Lexi is just a whole nother dynamic to this. Um, That’s Fred. The fragileness of life is so important for families who have children with special needs to understand. And every day is a gift, as you said earlier, and take it as such.
And we took it as a gift. Now as a punishment, there’s certainly a couple of dark days where we struggled. Why, why, why? But for the most part, it was, let’s pick her head up and let’s look forward. And our daughters have learned that from us. And I think it’s a gift that will get them through life. Much better than if they didn’t have that experience.
You gotta understand, like Ainslie is a strong spirit. Like whether she was with us, whether she’s she’s passed on off of earth in the flesh, like her presence is strong and to, into, to be fortunate enough to be like the father to someone who has that, that strength. I mean, W what, uh, what an opportunity. I mean, it does it, does it suck that she’s not here anymore?
Yes. Sucks. We miss her every single day, but the only way that I’m really able to kind of accepting cope and get through that thing is to just to try to take a step back and not be selfish and look at what she’s done. And that stuff is just powerful and strong and it continues to happen across the United States every single day.
And quite frankly, that I am proud of her. For for, for, for that, you know, I mean, that’s just, that’s just strong and the whole time that she was here, she never complained. She didn’t, she didn’t, she never took time to, to say, is it feels sorry for herself. She lived the life. That was one of, of, of just continuing to move forward.
And I don’t know, man, I’m just fortunate enough to be able to, to be your father, you know, and, and that’s special. Our story did not end with the happy ending that we might’ve wanted at the time, but it’s happy ending because one day there’s going to be a great reunion in heaven and it’s by the grace of God that, uh, we were able to take our son’s life and death and pull alongside him for each others as they walk through their trials in life.
And so. No, our son died a lot earlier than we would have liked him to. We are privileged to have him for four and a half years, and we know that one day there’ll be a grand reunion. So there is at the end. And the other thing that we found in Luke’s passing is there’s a grieving group in our heart feeling less.
We don’t want to stay in the grief. We feel it deeply. We process it, we share it and we want to look toward the light, you know, rather than. Is that sort of a thing for us.
Tom Couch: We’d like to thank you for taking a few minutes to listen to these special fathers and their stories, the Special Fathers Network as a dad, to dad mentoring. Program for fathers, raising children with special needs through our personalized matching process. New fathers with special needs children to connect with mentor fathers in a similar situation.
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This is the Special Fathers Network, dad to dad podcast. Thanks for listening.