He’s an amazing guy. After living through the loss of his son, Eliot, after only 99 days, due to Trisomy 18, or Edwards Syndrome, Matt and his wife Ginny went on to form the charitable group 99 Balloons.org. Then despite all they’d been through, they adopted Lena, a young girls with special needs from an orphanage in Ukraine. Matt is David Hirsch’s guest in this Dad to Dad podcast, presented by the Special Fathers Network
Dad to Dad 37 – Matt Mooney lost his son Eliot after 99 days, then adopted Lena, with special needs from a Ukraine orphanage.
Matt Mooney: She walks all the time. Now she communicates with the device. If she didn’t, we would still love her. We’re constantly trying to live out those lessons that Elliot’s life taught us has she is an absolute joy and we did not rescue Lena. She most certainly has rescued us.
Tom Couch: That’s our guest today on the dad to dad podcast, Matt Mooney. Matt’s a father of four and executive director of the charitable organization, 99 balloons. He’s had two children with disabilities, Elliot who passed away at 99 days old and 12 year old Lena who was adopted from the Ukraine. And now here’s our host, a man who spent decades advocating for fathers David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad, to dad, podcast, fathers, mentoring, fathers of children with special needs. Presented by the Special Fathers Network.
Tom Couch: This Special Father’s Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.
It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.
David Hirsch: And if your dad looking for help or would like to offer help. We’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.
Tom Couch: So let’s listen now to David Hirsch’s conversation with special father Matt Mooney.
David Hirsch: I’m thrilled to be talking today with my friend, Matt Mooney of Fayetteville, Arkansas, a father of four and executive director of 99. Balloons, Matt, thank you for taking the time to do a podcast interview. For the Special Father’s Network.
Matt Mooney: Absolutely look forward to it.
David Hirsch: You and your wife, Jenny had been married for 15 years and other proud parents of four children, Lina age 11, Hazel, age nine, Anders, age eight and Elliot, who was born in 2006, 12 years ago with trisomy 18, who live for only 99 days.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Matt Mooney: Sure. I grew up on an hour from where I live now, uh, which is Fort Smith. Arkansas had a mom and a dad and in a four year old, older sister than me, she’s four years older than me. That is, I grew up there. My dad was a state farm agent.
My mom was a teacher. I grew up at a tiny Christian school in Fort Smith, Arkansas, but there from five-year-old kindergarten to my senior year, my senior graduating class was. 26 people. So it was a small school and it was a, a great community for me to grow up and thoroughly enjoyed it. My father, when you would go to his office, there was always a line and it looked more like a soup kitchen, to be honest than it insurance agency in that he always had people there.
Who he was helping in our community. No matter when you stopped in, there was, there was always somebody kind of waiting there for some reason, they’d been pointed to my father. And so grew up kind of in the shadow of that and have very different parents. You know, my, my dad is an emotional guy. He can cry at the drop of a hat.
We’re, we’re a little bit different in that way. And my mom is kind of more, she’s more of the teacher type. She’s a little focused and ready to get some things done. So. I was loved and my mom and dad still have a huge impact on my life.
David Hirsch: That’s awesome. It sounds a little bit like Mayberry RFD.
Matt Mooney: It was, you know, I think looking back at that, the word I would use, I was probably sheltered a little bit in the, uh, I guess it in a good way and in a, uh, in a way that I became aware of as I grew up.
David Hirsch: That’s awesome. So you had mentioned that your dad was a state farm agent. How would you describe your relationship with
Matt Mooney: your dad? Yeah, my, my dad and I are, we’re very close, still close today. He, he actually lives closer to me now. Not, not even an hour away. They’ve just recently he retired and they moved, gosh, they’re probably 15 minutes away.
And so they still, you know, pretty much we’re at the phase where they come over to see my children and acknowledge me. But, uh, we’re still, we’re still close. You know, we are very different people. I think my, my dad modeled for me kind of a, a life of faith and a belief, our personalities, and the way we experience things and our interaction with people, it looks very different.
I think the thing that we share is we’re both kind of known for being a little bit more outgoing. I think I picked that up from him, particularly with people. So people think of us kind of as very similar in that we’re. We’re both saying hi to everybody talking to everybody. Uh, but at that probably comes a little bit more naturally to him and a little bit more learned for me.
David Hirsch: Okay. So in addition to being outgoing and finding a visa to talk to people, is there any advice that you received from your dad or important lesson or lessons that you picked up along the way?
Matt Mooney: Yeah, my goodness. That’s a, that’s a great question. And a tough one to answer because yes, and I th I think my dad in his own way, You know, more than I remember him giving me a particular this, that, or, uh, even a talk.
You know, my dad was always very open, very honest with me. I always felt like he was an approachable person that I could talk to anything about. And he. Hammered that home and every chance that he got, you know, Hey, I’m here. We can talk about anything. You know, what I learned from my father was probably more caught than taught, just watching him as he lived his life, the way that he lived at the way that he loved me, the way that he led our family for me is something that I admire.
And I, and I’m hoping to implement as I now lead my own family.
David Hirsch: So if I can paraphrase what you’ve said, Instead of telling you what to do or how to do things. He was just a great role model for you to emulate. Yeah,
Matt Mooney: I think he was absolutely. And I’m sure I am sure that he told me as well. However, what stuck was not necessarily the words or particular talk, but what stuck was the way that he lived it out in his life.
David Hirsch: That’s awesome. So how about your grandpa’s on your mom and your dad’s side? What role did they play?
Matt Mooney: You know, I ha they were both geographically away from me, but they were both available to me, but I would say, you know, by way of men in my life, my father certainly had an outsized impact.
David Hirsch: Did anyone else serve as a father figure while you’re growing up or more recently for that matter?
Matt Mooney: Yeah, absolutely more recently for me, there is a man in my life who I would say from really, honestly right around the time we had our first son Elliot. He’s a man named Tom who lives here in Fayetteville, Arkansas. So we were kind of new to Fayetteville. Around that time. We had gotten into a small group study that he was leading.
He was someone for me. I ended up working for him through law school. I ended up working with him once I graduated law school. So for him, it was just a man that we had. I had a working relationship, but far deeper than that, he, he was the man who spoke at Elliot’s funeral. So, so I followed him in, in many different ways, respected him in many different ways.
And he’s just someone who has spoken into my life along the way, who has made himself available to me, whether that be professional, if I need help, he’s served on our board for 99 balloons, but also just, didn’t kind of in fatherhood and marriage in faith and all of these things, I feel like he’s someone that I can talk to and I am certainly.
Thankful for his impact in my life. And honestly, he represents something I probably want more of in my life, which is friends that are in front of me in life, able to speak into my life. I value that, but that’s not an easy relationships to form. So I’m thankful for the one I’ve had.
David Hirsch: And you said his name is Tom.
What’s his last name so we can give them a proper shout out here.
Matt Mooney: Absolutely. I, his name is Tom Addington and he is a dear friend of mine.
David Hirsch: That’s great. Thank you for sharing. Everybody should have at least one, if not more people that are talking into their lives, right. It’s a special relationship.
Matt Mooney: Absolutely. I think that that’s a hard relationship for on my end, as is as the younger end of what I would be looking for. I think that’s a hard relationship to kind of find an initiate, but I’m, I’m thankful that Tom has been in my life. I, I would like more of that even.
David Hirsch: Great. So, uh, Going back a little bit.
You went to a university of central Arkansas undergrad, and then law school at university of Arkansas. When you were graduating, what is it that you were thinking? Where was your career pointing you?
Matt Mooney: Yes, there’s some time in between there. So I graduated undergraduate from Conway. Then I got married, started my first job did that for four or five, four years, and then had another year.
Of kind of figuring out what the next phase of life looked like then went to law school. So I went to law school as a married guy. We had Elliot our first child who definitely changed the trajectory of our lives in that first year of law school. So coming out of law school, what did life look for me? It certainly looked nothing like what?
I entered law school thinking it looked like for me, um, I had wanted kind of to get more into the professional scene. I’d been doing a ministry for the first four years. Couldn’t get hired after I decided like, Hey, I love ministry, but I’m moving on. I’m looking for something else. Couldn’t find a job to save my life in Nashville, Tennessee, where we had lived at that time.
So I decided as so many people do, Hey, I’ll go to more schools since I don’t know what to do. Went to law school started that. And then after our first year of law school is when we had Elliot. So I came out of law school having, having grown quite a bit. Having gone through quite a bit more than I went into law school, for sure.
And I certainly had a different outlook on life and what mattered to me and how I, how I found worth and what I was going do, uh, is certainly wasn’t in dollars at that point. That’s just not where my head space was at because of the way that Elliot had kind of changed my perspective. And I believe the way that God had changed my perspective through Elliot’s life and through losing him.
And so that, that kind of is the beginning point. Coming out of law school of how we started and 99 balloons, the work that I do now. So would
David Hirsch: it be accurate to say that it’s a pre Elliott post Elliot sort of view of the world that’s really shaped
Matt Mooney: for sure. And, you know, I don’t think for me, it was like a, I was going one direction and then wow.
After, after Elliot’s life, I was going, um, completely in a different direction. That really wasn’t the story for me. It was more. That knowing Elliot experiencing his life of 99 days and experiencing losing him catapulted me much deeper in the direction that I think my life was headed anyway, but I believed things much more deeply.
I held to things much more deeply, and my values were shaped a lot by his life. That’s great.
David Hirsch: So let me take a step back, uh, out of curiosity, how did you and Jimmy.
Matt Mooney: Yeah. We met on the shores of a Lake at a, at a Christian sports camp called Kanakuk camp. And so we were both counselors. I was a junior in college coming from Conway.
She was a, yeah. What was she? This had been after her freshmen going into her sophomore year at Alabama of, so she roots for Alabama. I root for Arkansas. It’s been a long, long. Hard cold life of marriage that I’ve lived. Um, so just know that we’ve met as counselors at a camp and, you know, we met and we were, you know, supposedly dating or whatever we were that summer.
And then she went off to actually go into a program through Alabama to go to Montana. So she then headed off to Montana. So our first semester of dating was on the phone. Uh, and, and you know what, I think that service pretty well. We got to know each other through long conversations and then, uh, she did move back, moved a little bit closer and started going to school, Louisiana tech and so graduated.
And then our, our first years of marriage were in Fort worth, Texas.
David Hirsch: Got it. Well, Crimson tide versus Razorbacks. That’s all I heard you say.
Matt Mooney: So while that is, it is not been much of a, it is not, not that much of a game now for about 12 years, but Hey, I am nothing, if not an optimist. So we’re going to turn it around one day.
David Hirsch: I love it. Thanks for sharing. So let’s talk about special needs on a personal level and then beyond. So before Elliot’s diagnosis, did you and Jenny have any connections to the special needs community?
Matt Mooney: Not one thing, not one thing at all. And we received Elliot’s diagnosis when we were 30 weeks pregnant.
And so, you know, we were jumping on the computers and finding out what the definition of trisomy 18 was, and it was a completely. New world to us. And Elliot was the first kiddo that I had hung out that had different abilities that looked different, but he definitely opened the door to, to where we are now, which is living in community with a whole lot of friends with disabilities.
David Hirsch: So, 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?
Matt Mooney: 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 had been healthy, you just don’t understand birth.
Then you’re going to doctors and you’re doing all this stuff. And with a diagnosis like Elliot had you just, you get to this place where the doctors are no longer giving you answers. They’re really looking to you to lead, you know, their 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 terrifying, horrible place to be.
And so we became kind of crafting that and trying to figure that out. But I would say my, our first reaction and one that we haven’t moved past is just a complete and total grief. You know, we are fond of saying that grief cannot be measured or compared, and grief is, is any time that. That your life doesn’t look like what you expected so you can grieve all sorts of things.
But for us, certainly, you know, at 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 punched back into that deep grief. And you know, I’m quick to say, you know, I miss Elliot every day and, um, 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
David Hirsch: have a very powerful thank you for sharing.
And, uh, that comment about grief about you can’t really compare one type of grief to another, and that, you know, it occurs at a lot of different points in time, right. Something will trigger it. That brings you back to a certain situation that, uh, You know, it’s just human nature. Right. It’s just how we’re wired.
So what, what is Chris may 18 for the listeners who might not be familiar with it?
Matt Mooney: Yeah. Let me take you to a quick science class. It might’ve been a while. It has been for me, but we are all, we all have 23 pairs of chromosomes. And so a trisomy 18 is where you have. Three chromosomes on the 18th. What should be a pairing?
You have three instead. And so what that does, that’s a, it’s a genetic thing that they don’t know what causes it, but, but something has gotten into genes and has caused that. So that affects all sorts of. All kinds of the body that affects, you know, there’s some common type things that that affects, but that ends up having an effect cause that’s in your genes.
So more common people have heard of down syndrome. So down syndrome is trisomy 21. You have a trisomy on the 21st pair. But the reality for a trisomy 13 or 18 is they’re, they’re typically more serious. They’re, they’re more profound on the child’s life. So that many times the trisomy 18 child will live for hours if they even make it to birth.
And so certainly some live beyond that, but 99 days for trisomy for full trisomy 18 was actually a. That was a, you know, many people don’t get that in our scenario. Whereas with the trisomy 21 and people can live with that diagnosis. There, there are obviously some real complications and real things that come with that, but, but first you can live a full, beautiful life with down syndrome.
And that is just statistically, not very often that that would occur with the trisomy 18.
David Hirsch: Got it. So the life expectancy is probably the biggest issue, which is. It’s expected to be very short, if not even to live past a birth, which has gotta be overwhelming.
Matt Mooney: Yeah. And I mean, many, many will not make it to term.
Um, Many do. I mean, it’s statistically a small group, but it’s not an unbelievably small group. It’s not unbelievably rare, but many folks may or may not know that there was ever a trespass teak that child didn’t make it to term. And so sometimes that’s the occurrence as
David Hirsch: well. Got it. Is there any advice that you got early on either right before Elliot’s birth or shortly thereafter, that really helped you and Jenny put this all in perspective.
Matt Mooney: You know, I, I’m pretty quick to say, and we had people who loved us so well during Elliot’s life, they, they filled our fridge. They took care of dinner. We were not focused on what the next meal was. We just didn’t have that luxury during his life. We were taking care of him and that involved a lot in so many people who are still our friends jumped in.
Took care of us loved us so well. And so I’m pretty quick to say that, you know, there were so many emotions, feelings, and that, that just living in light of the reality that, you know, every day is a, is a true gift. You, you weren’t supposed to have this day and there’s a lot of fear associated with. The reality that you live in with a child who is not expected to live long, you know, it makes every little cough, a little bit more serious, or you don’t know if it’s serious or not.
So I’m pretty quick to say that I don’t remember any gift. That anybody gave us. I don’t remember my wife does, but for me personally, you know, I don’t remember anything poignant that somebody said or a letter that they were. And, and, and we had tons of people who did, and I’m thankful. Uh, but I’m, I’m pretty quick to say that I remember the people who chose to walk through his life with us at a time when I know it would have been very easy to distance yourself from us.
Um, I get that. Uh, we were a hard reality, right? Like, uh, we had eight weeks where we had a pretty much a terminal diagnosis. And then we had 99 days where we were living in light of, you know, I mean, we had a birthday every day and every day was special and it was unique, but you know, it was also a heavy reality that we were living with.
And so I’m pretty quick to say. I remember the eyes and the shoulders that I cried on of the people who stuck around me and chose to walk through that with me when I know they could have done otherwise. And it would have been simple to do otherwise. And honestly, I’m not sure that I wouldn’t have done otherwise, but I remember those people that, that leaned into it instead of distance themselves away from what was a hard deal that we were walking through.
David Hirsch: Yeah, very powerful. Thank you for sharing. And if I can paraphrase what you’ve said, you don’t remember the advice or the conversation so much as you remembered who they were, who the people who walk through your lives at that. Period of time where, and, uh, you know, it sounds like it was such an overwhelming experience.
Uh, everybody deals with grief or trauma in different ways. Um, but that’s an important insight to take away. Thank you again.
Matt Mooney: Yeah. I mean, that, that is what I share with folks, you know, I mean, every, everybody wants like, Hey, what book do I buy this person? We all want that magic bullet thing that makes.
Things. Okay. But the truth is we have people in our lives that are walking through things that we just can’t make. Okay. And nobody could say the right thing, do the right thing, you know, but they can walk through it with us. It’s so many did, and we’re so thankful
David Hirsch: for them. So I remember early on, I think even before we talked the first time, there was like a.
I think of it as a daily video blog that I saw, and it was this very fast paced from the first day through Elliot short life.
Matt Mooney: Dear Elliot. Right now you are two months from being born. We just found out that you have trisomy 18, also called Edward syndrome. Dr. Sellis that you won’t likely make it to birth your mom and I are praying against that.
We’re praying for healing. We’re praying for nothing less than a miracle. You’re our first child and the day of your birth couldn’t come sooner.
David Hirsch: Whose idea was that to grade this daily video blog?
Matt Mooney: Yeah. So if we take a technology backup, you know, a decade week, we kept a blog during Elliot’s life. W we, we had lived in like three different places in the span of a year and we were each from different places than that.
So. We had a lot of people in our lives that we wanted to know what was going on, but a blog seemed like a way that we could kind of keep them at arms distance, but yet we could be asking them to pray and we could be letting them know, like, this is what’s going on in our life. I had to explain what a blog was at that point in time.
Most people hadn’t heard of that every week I would write an update during his life. It was a little more often than that before he got there. And there ended up by the end of that, being a lot of people who were following his story, praying for him and really encouraging us through that. So, you know, when Elliot was gone, because we knew the reality of his life, we had taken a lot of pictures.
We had taken a lot of video and I knew that I wanted to do something. I was gonna sit down and, you know, for me, I’m a creative type person. I was going to weave together something with these pictures and this blog and these videos. And so a couple of my friends knew that I was trying to do this and, and there.
The reality of that was like, I sat down with that in my grief and in our loss. And there was no way nothing was coming from that. It just, I was not able to, you know, if we, if we had 20 hours of footage, all 20 hours to me were the most prized possession I ever had. I couldn’t edit it. I couldn’t cut it down.
I couldn’t make anything creative out of it. So in that process, we had a friend who said, you know what? I have someone who I think. Could really do a beautiful job. I know you guys want to do something. We were thinking we want to put together something that tells the story of Elliot’s life. And, and honestly, for us, like one day, we want to share that with our kids or people in our life that come into our life later, we want them to know this story.
We have lived something here that if you know us, you come into our life later, we’re going to want you to know. And so a friend of ours took that, did a beautiful job, made a six minute video called 99 balloons. And it was that dear Elliot, you were born today weighing in at six pounds. You’re already a miracle to us.
Your mom is doing well and it looks like we’ll be hanging out here at the hospital a little longer. Dear Elliot. I don’t know if you’ve noticed, but you’re connected to some Tibbs. The doctor said we have to keep these ads so you can get oxygen to breathe. You’re also fed through a feeding tube. We feed you every three hours and it takes an hour and a half to do it.
We’ve loved learning how to best take care of you. We love it. Lots of people, email call and send cards on your behalf. You’re well loved. So it became a. A well known video. I like to say that that video has a life of its own. So it’s been viewed by X, millions of people. And we heard so many people who sought us out and got in touch and shared with us their story.
And it really became a beautiful thing where our story and this. The story of Elliot’s life was shared in an amazing way. And it, it, because of that video, we were able to go on the today show a couple of times. And because of that video, we went on Oprah a couple of times. And so it opened all of these wild doors.
That would be honestly, David so exciting if people thought that I was amazing and they wanted me to come on the today show, but that was not the case, but we felt. Like we were called as Elliott’s mom and dad to share that story. Dear Elliot, we all got to go to a reunion at the hospital. I’ve never seen your mom more happy.
The joy she felt getting to show off her son can’t be described with words. In fact, she compared it to the way a mother would feel when her son becomes president or wins a Heisman or develop secure for cancer. The logic of medicine says you shouldn’t be alive. But you are, you are such a fighter. Dear Elliot, you have now passed the three month.
Mark. You also got your first cordless pictures taken today. No feeding tube, oxygen, or stickers. This was no small accomplishment, but we got it done. Have I told you lately that we are so proud of you? You know, everybody sees the, the hard part. I think of being Elliot’s mom and dad. And that is part of it.
We don’t discount that, but we also wanted to tell the beautiful part of being Elliot’s mom and dad, and, and that was harder for people to get. And so I think the video best captured both sides of that. Very difficult reality of losing him. But man, we had a birthday party every day. We lived in the moment and we loved our son and are forever changed by his life.
David Hirsch: Yeah, well, it is powerful and you can’t anticipate something like that. Taken on a life of its own, literally a life of its own. And being able to share that in a positive way, not the videos, or look at us, you know, from a brief standpoint, but, you know, celebrate what you have, right. Which is, you know, one day at a time, that’s all we get anyway.
It’s easier to talk about much harder ducks.
Matt Mooney: Dear Elliot, today you went to be with Jesus.
an underdeveloped lung, a heart with a hole in it and DNA that plays faulty information into each and every cell of your body could not stop God from revealing himself through a child who never added a
David Hirsch: word,
Matt Mooney: not a pulpit, not a slick presentation, not a bestselling book. But a six pound boy with trisomy 18, God found great pleasure to take a lowly thing in the eyes of the world and show truth at your funeral, we released 99 balloons, each balloon representing a day of your life, how beautiful it was to watch how quickly they were gone.
And so today we celebrate Elliot. You are well. And although we miss you more than we can express, we’re only separated from you by our time left on earth. See, you said mom and dad,
you know, anybody can go and find that video. If you, if you Google the 99 balloons of however, it is a heavier video, you know, it might not want to watch it at work or going into a meeting or briefly ended. I get told that still to this day, once a week about like, Oh my gosh, I watched your video at the wrong time.
So there’s your heads up. There’s a warning.
David Hirsch: So, uh, what I find interesting is that, uh, you went on to have two more biological kids, Hazel, and Anders, and followed by adopting another child. So I’d like to have you put that in perspective, and then let’s talk a little bit more about Lena.
Matt Mooney: Yeah, absolutely. So, you know, from a doctor standpoint, they were, yeah, absolutely have children.
You’re you’re most likely to be fine, pretty much statistically, the exact same as before. It’s so that’s easy to say, but hard to live out. And so we got these two. Unbelievable gifts named Hazel and Andrew is 15 months apart. And this was at a time in our life when they were two and three, we were beginning to do more work with the organization.
99 balloons that we had started, we had started nine ambulance is a very small, very community oriented. It was a recess night, just a respite night for families to bring their child with disability. And they were paired one-to-one with a buddy. And so. That’s where we were at in life. We were doing recess in our community.
We were getting to know those around us with disability and the families with disability. And we were raising a two and a three year old. And about this time we felt like we were supposed to really do more with not a nine balloons. And I was looking to do it as my job. And so it was, it was a wild time in our life.
You’ve ever had tuna three-year-old 15 months. It’s just a little, it’s a wild season. Also. I was saying, I think I’m going to step away from my jobs and my paychecks. And we’re going to try to do this. And 99 balloons thing as like, that’s going to be our job, I’m going to try to do it. We’re going to try to grow it.
And one of the really pressing ways that we were feeling we wanted to do that was. We were becoming aware of the realities of disability on a global level, through some families that we were meeting, we were, we got involved in Ukraine with our organization and began to understand what disability meant in the context of Ukraine.
It’s very different. It’s very sad. It’s very heavy and it’s very isolating a diagnosis of disability in a place like that. And so. We just said, well, you know, we have this organization we’re going to get involved globally. And, um, and, and we did. And so. About this time, we became aware of a girl named Alina who was five years old and Lena was a profoundly disabled.
She was nonverbal could not talk or communicate. She was not walking. She laid in a crib 23 hours of the day. And in Ukraine, her head was shaved to ward off lice. She was in a large, large institution in a small room called room four, which is where they kept the children with disability. And. Uh, suffice to say it was not a happy, joyous place necessarily.
And as we learned her story and as we began to do more work globally through the families and through the work of following some therapists that were going from here there, and not at nine balloons getting involved there, we begin to tell Lena story back here at home. And we were doing this in order to raise money so that I could go to work for 99 balloons.
So we were using lean story to say, Hey, this is the kind of kid that we’re working with in the reality of her story at that time was, she was five years old. She was in an orphanage and she was about to age out. When you age out, um, with disability, you go into an adult setting in Ukraine. And so the reality for kids with disabilities, if they’re not able to walk is more than 50%.
The majority of those kiddos will pass away within the first year of being transferred to that adult institution. It’s, it’s not a great life for them and they’re quite neglected. And so we began to tell her story. And my wife came to one of those meetings and I was sharing that story of, Hey, this is I’m trying to, I am trying to get other people involved here, you know?
Well, Jenny, my wife came away from that and she tells me the week after, you know, Hey, I don’t, I don’t know what this means, but I’m staying up all night. And I’m praying for that girl that you told the story about in Lena. And I said, these are famous words. I said, well, I’ll tell you what it does. It mean it doesn’t mean we’re adopting her.
Let me tell you why that was now, what that was is we had, I was very open to adoption and I was since Elliot, very open to adopting. And if we had even talked about and discussed, adopting the child with disability one day, but I was not getting a paycheck. I had like a six month plan and then I was going to have to do something else.
And so if you fast forward two months from my famous words, A lot of things have changed a lot of things that fall in place people had gotten behind and given to 99 balloons, uh, AKA, I was getting paid. Uh, we got a gift from Jenny’s family for Christmas. That was not enough for us to do an adoption, but was enough that we had to say, Hey, wow, that never, we didn’t see that coming.
And that’s never happened before, but maybe now we can take a step and so long, long story. Um, You know the story we were sharing of Lena, she came into our family of five. So we brought her home from Ukraine at the age of five. And you know, the next three years are somewhat of a blur in that, you know, she had a lot of effects from neglect, a lot of effects from the reality of where she had been.
We brought her home. She was malnourished. I mean, it was a very hard reality that she came from. Compounding that she has severe autism and cerebral palsy. And so, you know, we spent the three years of, I call it the season of no, you know, can you come over? No, y’all want to come out and hang out. No, uh, our world was very small in every year.
It’s been fun to watch Lina and our prayer for Lena is that she would just be who she was meant to be, and that what was taken from her would be restored. And so it’s been fun to watch her. Become who she is. She is 12 years old. Now she is beautiful. Her be the first thing you notice about Lena, whether you know her story or not is she’s got beautiful long blonde hair.
She walks all the time. Now she communicates with the device and you know, if she didn’t, we would still love her. She is an absolute joy. And I’m quick to say that we did not rescue Lena. She most certainly has rescued us. So that, that is our family today. It is wild. I, if I invite people over, I say, you’re, you’re welcome to come into our chaos.
Anytime you want to. They’re now third, fourth, and fifth graders. Lena is, is the fifth grader. She’s the oldest of the bunch.
David Hirsch: That’s an amazing story. Thank you so much for sharing. And I think what I heard you say that we’re not going to adopt,
Matt Mooney: right? That’s right. I’ll tell you what it doesn’t mean. We’re not going to adopt her.
That’s that’s that’s words to write down so you can eat them later. So
David Hirsch: whenever I catch myself using the word, never, you should write that word down and the time and the place that you said it, because invariably it becomes your reality.
Matt Mooney: That’s the life I’ve lived.
David Hirsch: Yeah. That’s just amazing. And the fact that you not only opened your home, but your hearts Talena is an extraordinary role model to all parents, not just parents raising a child with special needs, like Lena has experienced.
It’s just profound again. Thank you for sharing. So, uh, there seems like there was a lot going on two young kids adopting Lena, all the things that you can only imagine that would be involved. And I’m wondering, were there some really important decisions that you and Jenny made during that period of time that helped you, you know, connect the dots,
Matt Mooney: you know, I think for us in the way that we’ve navigated decisions for us, you know, our faith is a huge, huge piece of our lives and the way we make decisions, you know, we didn’t start 99 balloons as a way to remember Elliot.
We didn’t need anything to help us remember him. We remember him every day. I miss him every day, but I think for us, we are always putting one step in front of the other and making our decisions. I think we have a strong bent to go against the grain. We kind of, from the very early parts of our marriage, we had kind of said, no picket fences, you know, like we’re not gonna aspire to status quo.
That’s just not our aspiration. And that has guided us way more than I ever would have thought it would. You know, Lena is definitely not a status quo family move in. So I think in one way, we’ve, we’ve kind of had these guiding lights of, you know, We want our marriages and our lives to look different. If that’s the case, there’s going to be sacrifices to make for that.
If you, if you don’t walk in the status quo, they’re their sacrifices. You’re, you’re, you’re doing things a little bit more difficultly, but we believe that that’s where the joy is found too. And so the other kind of pulsating light that we guide by these just w as we take one step in front of the other, we’re constantly trying to live out those lessons.
That Elliot’s life taught us 99. Balloons is an example of that. Our family is an example of that, even the way we interact with our children now. And we’re constantly, you know, relearning things that we’ve learned already, you know, so much of what we do is trying to put. Into reality, the things that we believe that’s been a much bigger challenge than I ever thought.
You know, you can believe things, very passionately and live very different. We are striving our best and failing miserably daily. Don’t get me wrong to live out the things that we believe at a very deep level. And many of them go back to just Elliot’s life and the set of values that we were reoriented to that all lives have worth and value that.
We’re trying to live that out, you know, and it’s conversations. We have our kids and when we send them into school and, you know, we tell them, be looking around you for someone who might need encouragement today, who might need love today. You have no idea what they’re going through. When they step into the space of the school, you know, their lives are not like your lives.
And so, um, even where our kids go to school and the school that we chose, all of these things we are trying to, to press in and live out the things that we deeply believe.
David Hirsch: Yeah. Well, I love what you’re saying. And I think about it as intentionality. You know, you’re much more intentional than most of us I’ll speak for myself, I guess.
And you said something about that’s where life has lived, which I interpreted to be outside your comfort zone, right. When you’re not doing what everybody else is doing when you’re not doing sort of what’s expected. That’s where life is, right? When your senses are at a heightened level of awareness, because you’re not in a familiar environment and my hats off to you.
I think that’s just fabulous.
Matt Mooney: Yeah, we, we, we, we, we we’re, we’re strange. And I know that not everybody necessarily agrees or even aims for where we’re headed. I understand that full well, but like, we got to teach at a, at a camp for families with disability and, you know, one of the things that I said, and I had to really, like, I had to run this.
I had to run this by a few people before I was willing to say it. And I’m, that’s really rare for me. Usually my mouth is way out in front of, of any thinking. Uh, and then I regret that, but, you know, I kind of thought deeply on this and I, and I’ve come to believe it, but I, I am, we were talking to just families, experiencing disability, all sorts that we’re talking to them and, and, and I’m telling them like, I believe that you can have a full life and a flourishing life with your family.
Not in spite of disability, I believe you can flourish and live a full life with your family because of disability. And that’s a radical thought. I get that. That’s, that’s difficult for some people to swallow, but for us, we have found great joy, great truth. The best friends and the best community in building a community here in Northwest Arkansas, being surrounded by our friends with disability.
Well, you know, that’s not the case for most people. And I look at them and I, I pity for them. I think they’re absolutely missing out on that. You know, when we brought Lena into our family, there were people who questioned us, like what, what is that going to do? I mean, we’re bringing a profound. A child with profound disabilities into our family and the bold ones.
Most of them, if you know me would honestly not say this to us, but we still the few slipped through the cracks who said, you know, what’s that gonna do to your typically developing kiddos? You know? And that to me is just, it’s just a, a fear based way to live. I can’t control my typically developing kids lives.
But I can live out the person that I want to be. I can love other people and I can model that for them. And I can love them as well. And I’m not in control of everything. Elliot taught us that for sure. If I was he’d still be here. So, you know, I had some strong feelings for that question and, um, and I could talk another hour about it, but we believe deeply that disability is not something that keeps your family from flourishing.
Having worked now in. Many countries with families with disability through 99 balloons, we see families flourishing and families struggling. So it’s, it’s, it’s not disability. It’s, it’s how we react and how we learn to live into that and how we experience it. Yeah.
David Hirsch: Well, thank you for sharing. You were talking about his own Anders.
I know they’re still relatively young, but I’m wondering currently from the sort of young life that they’ve led perspective, what impact has Lena situation had on them?
Matt Mooney: Oh man, emits enormous, uh, in the, in the best of ways in the most difficult of ways. Um, so they are currently third and fourth graders.
So their story most certainly is. Still being written, you know, with our organization, we do work and I’ve researched enough about siblings of children with disability to know that they come with their own baggage. They come with their own experiences of that. And many of them have strong feelings about this, that, or the other when they come to adults.
And so we know we’ll cross some of those bridges as we get to it, but. We parent in with our, with our typically developing kiddos. And it’s something that we try to model for families we think is important. You know, we parent with a real honesty about the whole thing and, and I think. Often many families feel really bad about being honest about their situation with their own family members.
And so I think what happens all too often with our siblings is they just kind of Intuit. Like we never say anything bad about Lena. We never talk about how difficult it is. We never talk about how hard it is when we go into a restaurant and she screams and everybody looks at us, we’re not supposed to talk about it.
Right. And so we all just kind of walk around and there’s a big elephant in the room and nobody ever talks about it. And we do that with good hearts. Cause we don’t want to feel bad about it, but we parent in a way with our children’s very honest, just to say like, well, you know what, it’s kind of embarrassing when.
We’re the family at the table. That’s a frequent circus and everybody’s looking at, and we’re pounding the table and hitting our head and we just filled everything. We just kind of talk about it and say, you know what? Here’s the deal that stinks guys that that’s embarrassing and that’s fine to say. Does it doesn’t mean we don’t love Lena.
We do love Lena. That’s why she’s here with us, but it’s okay to say that that’s not fun. It’s okay to say that’s hard or that gets on my nerves. Like we do that with each other. That’s for sure. And so. You know, it’s, it’s one way that we try to treat Lena just like another member of the family. And the truth is we remind them that like, Hey, there’s some things that, you know, we all put up with about YouTube.
You know, that’s a good reminder for a third and fourth grader.
David Hirsch: Why I love it. And what I am reading between the lines is that you’re just gonna live life. Right. And don’t be too concerned about how people perceive you. You can’t control what other people say or think anyway. And, uh, what a great role model a message to send to not only your kids, but hopefully a lot of other people for that matter.
Matt Mooney: Well, you know, I didn’t know. I know that everybody is not like this and, you know, because I work with families with disability because I think about this a lot because of what we do because of who we are. It man. It’s a lot of work. It’s, it’s less so every day. And honestly, we are light years ahead of where we were three years ago with just having things that, that Lena can do and having ways that we can kind of navigate the world.
But man, I mean, there was a time when going to a restaurant was like, I mean, here, here we come. And everybody knows it. And was this fun? I don’t think this was fun. Was the food good? I, you know, I don’t know. I didn’t really even get to eat it. That was our reality and that’s fine, but we decided, and we believe that Lena is a gift to our community and that we’re going to show up and we’re, we’re going to be okay with our reality and.
If we can’t be okay with our reality, then we can’t expect other people to be okay with our reality. But as we have done that, and as we have kind of led into that awkward space and leaned in and we’ve showed up and we’re going to be here. And, you know, even though this might not look like what it looks like for your family to go to a restaurant, we’re going to a restaurant every once in a while.
And. You know, there’s no apologies for that. We don’t make any apologies. You know, we’re not sorry that we’re there. We’re not sorry that we’re louder. If we’re going to be here, this is the way it’s going to be. And we’re going to be here. Yeah.
David Hirsch: Well, I admire you for just doing what you think is right. Not only for your family, but the broader community.
I think the proof will be in the pudding as the, not just weeks and months, but years and decades roll by. So we’re definitely gonna have to do a followup interview a few years from now, for
Matt Mooney: sure. For sure. I’ll learn. I’ll have learned a lot,
David Hirsch: Switch gears a little bit. Let’s talk about 99 balloons. Where did the name come
Matt Mooney: from? Yeah, so the name came from, we released a balloon for every day of Elliot’s life at his funeral. And so that, that was kind of the name of the video that took on so much notoriety. And so when we began the work of working with our friends in our community with disability and began equipping churches in our community doing global work, it just kind of seemed to fit that, that we were trying to live out those things that we’ve learned through those 99 days with Elliot.
David Hirsch: Excellent. So what is the mission of 99 balloons?
Matt Mooney: Yeah, it is our dream to see people with disability valued and included within their community. Now that looks very different in the different spaces that we equip people to do that. Um, And so we go into places and invite them and help them and walk alongside them to be inclusive of our friends with disabilities in the United States.
We do that a lot, Canada and Australia as well in developed countries. I should say we do that primarily through churches. We help churches with tools for children, zero to 12, for a different model for teens and a different model for adults. We help train them. We provide tools and we do a lot of the admin in order to equip them.
And we remind them that it is valuable for you and you should, for your own benefit, you will be better church. If you include persons in your community right around you with disability, that you will be a better picture of your community by doing so. But not only that you’ll, you’ll be better off. You know, so often church work with people with disability is kind of pity based.
Um, and we really can’t stand that. And so we kind of come in and say, you know, it’s really not about how sorry you feel for someone. That’s not a very good motivator. In fact, let’s throw that in the trash, but really you will have a better life if it includes. People with disabilities. So we do a lot of training, a lot of equipping.
Uh, we have tools called recess, which is the respite night that I talked about. That’s kind of the first thing that we did right here in our community. We have a teen tool. That’s a social engagement tool called remix, helping teens with disability. Build relationships with typically developing teens and helping typically developing teens, build relationships with teens, with disability.
And then we have an adult model, which is basically a friendship model it’s called befriend. And so we have community gathering aspect to that, and one-to-one pairing and relationships reminding people, they need relationships with people with disability. And then we also do global work, which looks very different.
So when we go into global context, primarily. We are focused on helping children be included in schools. So when you go, we do work in Uganda. In India, Nicaragua and Haiti. Then we go in and we help partners, partner organizations of ours to include people with disability in school context. We think that really is.
We’ve now done almost a decade of global work. We see that including children into an educational setting as a real life changer for them, that allows mom. To not have to stay at home. So quick statistic here, nine out of 10 children with disability in developing countries are not included in school.
That’s 90%. So that means typically dad is out of the picture in a lot of global settings. And so mom can not. Get a job she’s taking care of her child all day. So education allows that child to be known in their community. It gives them a community. It allows mom to get a job. It helps that family out.
And then also just on the flip side, it’s not just for children, but for adults and for job training, uh, for our friends, with disability globally.
David Hirsch: I love it. So in addition to recess remix and the friend, which is zero to 12 teens and adult program, And the global focus trips, which you’re just talking about overseas.
I remember reading something about notable documentaries. What is that?
Matt Mooney: Yeah, so, you know, a lot of what we do state side for global work is making people aware of what disability means in another country. You know, women know that I didn’t know what disability and Uganda meant. And so one of the ways that we’ve come up with.
Kind of helping share that story is a notable documentary series. You can go to 99 balloons.org and you can watch a notable Uganda. So we have, we have two different segments. Um, you can watch the one from Uganda and basically we’ve put together a documentary that tells stories of what disability means and looks like in another context.
And it’s really beautifully. Well done and it helps you kind of get your mind around. Okay. Wow. The effect on a family and the effect on a person in a developing country, in a country experiencing poverty already is just profound and heavy. When a family gets shared with disability, that should be the beginning point, the starting point.
It never happens in Uganda. Most of the times parents are normal. The husband and the wife are normal. So they produce a child with disability. This is a shock to them. They haven’t seen, they don’t know where the hospitals are. Somebody somewhere hasn’t sensitized the local communities about this. They are shocked and they begin fearing the whole thing.
And it’s really beautifully well done, and it helps you kind of get your mind around. Okay. Wow. The effect on a family and the effect on a person in a developing country, in a country experiencing poverty already is just profound and heavy, and it gives you some ways to be involved with that as
David Hirsch: well.
Yeah, I love it. Thank you for the leadership in that area. So you’ve got people of all ages that are involved with 99 balloons, and you’re doing things domestically as well as internationally. And I’m wondering if you could look into the future five or 10 years, what’s your vision? What’s your engineer’s version for 99 blondes.
Matt Mooney: Yeah. So our vision is just honestly scale at this point that we want to see. More of everything we’re doing. And so we want to see more kids included in education. So we have, we have a child sponsorship called all in. It’s all, inclusives the idea for education? You know, we would like that to grow. We would like the opportunity to share that, to see more kids included.
There’s a lot of work to do on that front. Um, we would like to see more communities. Have programs to build relationships with people with disability. We wish and hope for a world where our programs aren’t needed for relationships to form. However we’ve seen over and over again that that’s not the case.
And so we hope to see. Recess and remix and be friend, you know, right now we have 43 recess sites. And if I could, fast forward five years, we’d have a whole lot more of them. And our other two tools are pretty new. And so we also want to be scaling those growing those. And so that’s kind of every everything we do is meant to be able to be.
Grown and scaled and shared. And, uh, that’s a lot of the work we do is get out there and tell people about it and just give them a little bit of vision that they can begin doing something right now that actually matters.
David Hirsch: Fabulous. So be brief, but I’m wondering what role spirituality has played in your lives.
Matt Mooney: Yeah, well that everything, and so, you know, our faith in Christ, um, has. Guided our every decision and, and we believe our work with 99 balloons is, is just a calling that he’s put on our life, that he made everyone. He created everyone. He loves everyone and silver welcoming, uh, in the work of that nine balloons were welcome everyone to the table that he said, we believe
David Hirsch: that.
So I’m thinking about advice. What advice can you share with dads or parents for that matter about helping a child with disabilities reach their full potential.
Matt Mooney: You know, I, I think for me on the, in the dad realm, especially one of the things that’s been most helpful for me is kind of this picture of a continuum where I think a lot of dads slide off one end or the other into the non-healthy zone, as we’ve gone, as we’ve built a lot of relationships with families with disabilities, state side, as we’ve built a lot of relationships globally.
Um, you know, I’m always looking for, what’s kind of true in all those contexts and one of them for men in particular, it seems as though there’s two ends to this continuum. One is passivity checking out, not being involved. The wife, the mom runs the show, does everything I follow up here behind, and don’t really ever lead and don’t do much and kind of check out.
And I think disability pushes a lot of men into that space of. You know, as dads, we want to solve problems as fathers, we want to make things better. We want to fix things, right? Like I want to go get my tolls and I want to fix it. You know, disability just doesn’t really create something we can solve. It doesn’t really fit into that grid.
So for so many people, I think they slide into passivity and then others on the other end of the continuum, slide into kind of control. That I’m going to control the situation. I’m going to be over the top. I’m going to be in on everything. My kids are going to be under my thumb. My child with disability is going to be under my bed.
I’m going to be at every meeting. I’m going to explore every unturned rock. And I prove my love by doing that. And. And I think somewhere between those two realities is where we got to find the live. And I struggle more with the control I’m going to solve. I’m going fix somebody to do. Uh, that’s definitely mine.
Uh, passiveness is, is not very often a GoTo for me, but I think fathers tend to fall into one of those camps. Uh, most often, naturally, uh, me included when faced with disability. They jump all the way in and try to control it, or they jump all the way out of it and try to ignore it. And so somewhere between those two things, I think is the art of being a father of a child with disability.
I mean, I think that’s a real art and the fathers that I admire do that well
David Hirsch: well-stated so why did you agree to be a mentor father as part of the Special Fathers Network?
Matt Mooney: I have had people in my life who have modeled for me and encouraged me in all aspects. Um, you know, when you’re faced with a child with disability, I feel like so often you feel abandoned, you feel alone in that world.
And so if there is any way to make that feel less lonely for anyone, I certainly want to be a part of that. Fabulous.
David Hirsch: Thank you for being on board. Is there anything else you’d like to share
Matt Mooney: before we wrap up? No, I love what you’re doing. I believe in it. And I just, I look forward to, uh, fathers being encouraged and, um, man, thank you for what you’re doing.
David Hirsch: Well, thank you. So if somebody wants to get information on 99 balloons or contact you, where would they go or how would they go about doing that?
Matt Mooney: You can go to 99 balloons.org for any information about the work that we do. And you can email me mattatninetynineballoons.org and ask all kinds of questions.
If you want to. I’d love to connect
David Hirsch: Matt. Thank you for taking the time and many insights as reminder, Matt is just one of the dads who’s agreed to be a mentor. Father is part of the special fathers network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own.
Please go to 21stcenturydads.org,
Matt thanks again.
Matt Mooney: Thank you so much.
Tom Couch: And thanks for listening to the dad, to dad, podcast, fathers, mentoring, fathers of kids with special needs presented by the special fathers network. The special fathers network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.
New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, go to 21stcenturydads.org. That’s 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group.
Please go to facebook.com groups and search dad to dad.
Tom Couch: And again, to find out more about the Special Father’s Network, go to 21stcenturydads.org, 21stcenturydads.org.