262 – Adam Terry of Nashville, TN Father of Three Including A Son With Noonan Syndrome & A Traumatic Brain Injury

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.

Adam Terry: When we were up there on that regular floor, Will… You could kind of tell he was starting to come to. His eyes were open. You could kind of see a little bit. And so my wife would hold up on a piece of, it was a hand towel. She would write “mom” on there. She would hold it up to Will and would say, “Does this say dad?” And he would just barely turn his right hand, just do a slight thumbs up. You could barely notice it. And when my wife Catherine got to “mom”, that’s when he turned his wrist. And it just, oh, he’s there! He is there. It was just such a wonderful sign to see that.

Tom Couch: That’s our guest this week, special Father Adam Terry, the Director of Business Analytics at Adhere Health in Nashville, Tennessee. Adam and his wife Catherine have three children, including Will 12, who has Noonan syndrome, and three years ago had a traumatic brain injury. We’ll hear the Terry family story, including how they dealt with Will’s injury. That’s in this Special Fathers Network Dad to Dad Podcast. And now here’s the founder of the Special Fathers Network and the host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, and thanks for listening to the Special Fathers Network Dad to Dad Podcast, presented by the Special Fathers Network, a dad to dad mentoring program for fathers raising children with special needs. Thank you to those who supported the 21st Century Dads Dads Honor Ride 2023 campaign, which was a 3000+ mile bicycle race from Oceanside, California to Annapolis, Maryland. I was one of the four racers and it took us seven days, 19 hours, and 10 minutes to go from coast to coast. Special thanks to the following donors for contributing $1,000 or more. In alphabetical order, they are: Kim Duchossois, Jim Duran, Chaz Ebert, John Guido, Horizon Therapeutics, Scott Marcotte, Damien Navarro, Dick Reck, Barbara and Glenn Reed, Rotary Club of Chicago, Don Stadler, Nick Topicha-Dolny, and UBS Financial Services. If you’ve not yet contributed, please do so by visiting 21stCenturyDads.org. Your tax-deductible contribution will help keep our programs free to all concerned.

Tom Couch: So let’s listen now to this fascinating conversation between Adam Terry and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Adam Terry of Nashville, Tennessee, who is the Director of Business Analytics at Adhere Health, LLC, and the father of three young children. Adam, thank you for taking the time to do a podcast interview for the Special Fathers Network Dad to Dad Podcast.

Adam Terry: Thank you, David. Thank you.

David Hirsch: You and your wife Catherine, have been married for 18 years and are the proud parents of three children: Brooks 6, Callie 9, and Will 12, who has Noonan syndrome and three years ago suffered a traumatic brain injury. Let’s start with some background. Where did you grow up? Tell me something about your family.

Adam Terry: My family specifically for me grew up in East Tennessee up in Johnson City, in the Tri-Cities area. I’ve got an older brother who’s three years older than myself. It’s just a good place to grow up. Good town. We grew up working for my dad. That’s what we did since I was a little boy. I can remember when I was little, we would go clean the office, cleaning trash cans, vacuuming, doing things like that. My grandparents on my mom’s side lived in Birmingham, Alabama. And then my dad’s side lived in Louisville, Kentucky. So it wasn’t uncommon for us to make road trips to one of those places for holidays and things or they would maybe come to us. Grew up there most of my childhood until graduating high school and then moving to Nashville then. My brother came here then me. Very fortunate, great childhood. Grateful to be a part of a wonderful family. I know some folks today are not as blessed. I’ve got two wonderful parents and I’ve always got along well with them. So very blessed.

David Hirsch: Yeah. Thanks for sharing. I’m sort of curious to know, what did your dad do for a living?

Adam Terry: Oh, David. [chuckling] We put in fencing. We did chain link fence, wood fence, high security stuff. I’ve worked putting fence around a prison or two. I’ve put fence on the sides of mountains to keep rocks from falling down on roads. Done a little bit of everything. It kind of teaches… I don’t know that I care to do that for the rest of my life is what something like that will help teach you. [laughing]

David Hirsch: Yeah. It sounds like it’s been a lucrative career for your dad and you learned a lot maybe about life and some things that you have a better appreciation for, maybe like a good work ethic.

Adam Terry: That’s right. I try my best not to wind up with a pair of post hole diggers in my hands any more than I have to, that’s for sure.

David Hirsch: I’m sort of curious to know, how would you describe your relationship with your dad?

Adam Terry: It’s good! We’ve always been pretty close. And I laugh, it’s when I went and worked for one of the subcontractors is when I got a pay raise. So he was always one of those, expected a lot of us, and we worked hard and, you don’t tarnish the family name, and try to leave things cleaner than when you arrived. And so dad was just not a man of many words and saying, I love you, or things like that, but you never questioned it. Dad supported us. He may miss a game or two, but then he was always, he would catch the games as much as he could. He worked hard to support us. And definitely dad is a mentor. And it’s funny, you know. Grandparents, when they become grandparents, you kind of see it’s different. When my brother, he’s got little kids a little bit older than mine, his oldest is 15. And I remember when that 15 year old was like two and riding a big wheel around their house, so like Christmas and hitting baseboards and stuff, and dad’s just laughing the whole time and so is mom. And you’re just kinda like, something’s not right. [laughing] And I didn’t understand that. I do now, but that was when I realized grandkids are different. And as a good friend of mine, Paul McCann says, if I had known grandkids were this much fun, I’d have had them first.

David Hirsch: Oh my gosh! That’s what my mom used to say about her five grandkids. She must have said that a thousand times. There’s some truth to that, right? There is some truth to that.

Adam Terry: There is truth to it. Watching dad, that’s happiness. Watching dad and mom with those kids, like there’s… they can’t be any happier, I don’t think. It’s fantastic watching that.

David Hirsch: That’s awesome. I’m wondering if there’s a takeaway or two that you’ve learned from your dad that maybe you’ve tried to incorporate into your own parenting.

Adam Terry: One of them I would say is persistence. Definitely hard work, persistence. I remember we were changing a water heater out at our house and we had plumbed it in, but it was still leaking. And you’re kinda like, it was late at night and it’s let’s just go to bed. And nope, he sweated it in, I don’t know, two or three times and we still had a little bit of a leak. And it’s let’s just, we’ll deal with this later. And nope. All the way through until dad got it done. And so it’s just one of those, you don’t give up, you keep going. I don’t even know if we had an option. I don’t know how we were financially. Could we hire someone out to do it? I don’t know. But we weren’t, I can tell you that. Dad was capable. It might take us an extra few times, but we’re not hiring it out. Dad’s gonna get it done. And he did.

And so I always remember that, and I don’t know if he trusted, I don’t know. I was young on this one too. The fan quit working on our freezer and he had ordered the part and somehow he trusted me to put that in. I shocked myself once. And I think that’s one of those, let your kid try and put some guardrails around him. It was 110 volts so it probably wasn’t gonna kill me. And it gives you a chance to fail a little bit, but then still a chance to succeed and build your kid’s confidence.

I messed up once. I didn’t do something I should have done when working for him. I slacked off which caused one of the other workers, they were waiting for me to have some boards ready so they could go put a job in. And I hadn’t done my part yet, so it delayed everything. And that was a good, humbling experience. I got a good chewing for that one. But again, it was needed. It was absolutely needed.

And I’ll look at some of those things now and it just helps build character. So dad, like I said, maybe not the man of most words, but there was no question he loved us and he did all he could for the family. And we worked hard and learned from him how to do that. It’s just good. It’s being able to build things with your hands, I think is a value that a lot of kids I don’t know that they get today. So dad taught me that and so I’m trying to work with my kids. Yeah, so dad taught me a lot and I’m blessed to have my dad for sure.

David Hirsch: Yeah. What I love about this story you were saying about changing out the motor in I think it was the freezer, he gave you a lot more latitude than maybe you might have expected. And I think there’s a real important lesson there. It’s a parenting philosophy, which is don’t do anything for your kids that they could do themselves.

Adam Terry: Yeah.

David Hirsch: And if you hold yourself to that, you’d let your kids do a lot of things.

Adam Terry: Yeah.

David Hirsch: And sometimes in the heat of the battle, you’re in a hurry. It’s a lot easier just to do something really quick just so you could get out the door or get to wherever you need to go. And we need to discipline ourselves to say, hey, maybe we just need to slow down a little bit and let our kids take on some more responsibility and let them know what that feels like. Because I think you’re right, it does build self-confidence.

Adam Terry: Sure.

David Hirsch: And that’s an important characteristic. It’s not something you can just read about, it’s something that you have to experience. So thanks for sharing. So I’m thinking about other father influencers and I’m wondering starting with your dad’s dad, your grandfather and then your mom’s dad, what influence if any they had on you?

Adam Terry: Yeah, like we all learn as we get older, how fortunate we are to have the things that we’ve had. But I’ve been blessed and continue to realize how fortunate I am regularly to have my dad, to have my grandpa’s, both of them, be involved and be around to be able to spend that time with especially my dad’s dad. And so it was just very much a blessing and very fortunate, very lucky to have had that time. Without a doubt, very fortunate.

David Hirsch: Thanks for sharing. I was also blessed to get to know three of my four grandparents who lived into their nineties. And it’s the exception, not the rule. And maybe people were living longer today. And it’s a firsthand relationship, not just as a little guy growing up, thinking, oh, those people are really old, but getting to know them in my twenties and thirties. And you’re right, it is a blessing to develop a real relationship, an adult relationship, with your grandparents.

So I’m wondering if there’s any other men who played a father figure role or mentor role in addition to your dad and your grandfathers.

Adam Terry: There’s been a few people. I’ve had a few people at church, I’ve had some coaches. I still always reflect on some of the football coaches. I played football and growing up and through high school, I didn’t play any after that, but several coaches had an impact. Again, being able to work hard, use your brain. There was a guy named Coach Donan. I still haven’t found him. I’ve tried looking him up several times. I had him for math in high school and he would give us some brain teasers and it was really good to work with him.

One more that I guess I would say comes up since I’ve thought a little bit more on some of this and some of the earlier discussion we’ve already had today is there’s a book by Clayton Christensen called How Will You Measure Your Life? And that book has been an influence like we talked about a moment ago, of don’t do for your kids what they can do for themselves. And he talks about that in that book about how they would redo things at their house and how it would take longer to have the kids involved, but they were involved and now they know how to do those things.

So those are coaches, church members, my father-in-law. My father-in-law’s an incredible man. I’m very fortunate to have him be a part of my life. He’s just very patient. He’s even keeled, like his house could burn down and he would seem the same today [laughing] if it burned down yesterday. Like he just, that stinks and we’ll figure it out. And that’s just how my father-in-law, Jim, is. He is just an incredible man. So I’m extremely fortunate to be surrounded by great people and just try to make sure I learn as much as I can from them so I can try to do the same, to be a good influence to those around me.

David Hirsch: So my recollection was that you took a degree from Lipscomb University, a BA in management, and then you went on to get an MBA. And I’m wondering, where did your career take you after you got your undergraduate degree?

Adam Terry: Sure. A lot of folks my age when they got outta school did mortgages. This is a little bit before the financial crisis. Things are going crazy. Here, you got a pulse, let’s get you a loan. And so, did that for a while. For some folks that may not know, that was before the Affordable Care Act. I was technically self-employed and I couldn’t get my wife insured. Actually she had some rare, odd medical stuff happen when she was about 15. She technically had heart attacks, myocardial infarction, so I couldn’t get her insured. So I was trying to find a job that had group insurance and fell into healthcare. It was a job that was, I’ll call it, rather crummy and I really didn’t know what I was doing, but I learned a ton in that job. And so I did that for a little while.

Did something totally different, following in the lines of dad doing some perimeter security stuff. I traveled a ton. That wasn’t good for the homefront. So then I eventually landed at another healthcare place doing kind of analyst work. And the rest is history. I’ve been in healthcare for… Well at that job, I started there in 2008, I believe, and have been in it ever since.

I enjoy healthcare in that I’m passionate about the space. From the very beginning when we had Will he had something called Noonan syndrome. And so just learning from the job about different stuff, that helped me a whole lot in managing our, I’ll call it maybe healthcare expenses from our personal life, and so that was very valuable. And then you begin to realize how, still haven’t figured out the best solves for some of this, but how do you help people navigate the system of healthcare? What kind of coverages and how much of something’s covered? Even now I’ve been in the business for over like a dozen years or more, and still trying to figure out today what exactly is covered is rather challenging. And even when you’re calling your insurance companies trying to get square answers that you can trust, it’s still challenging. And so I don’t have the answer. I know a lot of dads all face these same challenges that we’re talking about, and I know a lot of ’em have found their kind of own little hacks. And we don’t have a silver bullet, but definitely I get more and more passionate about healthcare professionally, just from a personal standpoint, which again, I think a lot of parents and dads go that direction. That’s for me how things have continued to go.

David Hirsch: Yeah. Thanks for the recollection of how your career has evolved and you’ve spent the better part of a dozen plus years in the healthcare space now. I’m sort of curious to know how did you and Catherine meet?

Adam Terry: My in-laws, that church, they were doing like an adopt a college kid program where college kids, even though my parents were here local, they were still pairing up college kids with families that were local. My parents didn’t go to my church. They went to a different church, but the church I was attending was pairing up college kids with other couples there at our church. And the people helping to organize that… Hint, hint, wink, wink, nod, nod. They strategically placed me with my now in-laws. And so it was, we joke, instead of adopt a college kid, it became adopt a son-in-law program. [David chuckles] I don’t know how many other success stories there are, but I may have been the first and only. But that’s really kinda where the rubber started, we started gaining traction, was through that. We were both at the same school, but that was probably where it really started happening, was through that program.

David Hirsch: Well, that is unique. Thank you for sharing. I don’t think I’ve heard anybody else say that before.

Adam Terry: [laughing]

David Hirsch: So let’s talk about special needs first on a personal level and then beyond. You had mentioned earlier that Will has Noonan syndrome. That’s what he was diagnosed with. And I’m curious to know before that diagnosis, did you or Catherine have any connections to the world of disability or special needs?

Adam Terry: We didn’t really have a whole lot of experience with special needs. And even when Will was born, I think it was eight months in, our pediatrician discovered Will had a heart murmur. Dr. Johns, brilliant man. Brilliant, incredible man. Super kind. And he diagnosed Will with, didn’t give full diagnosis yet, but he said Will has these two kind of heart defects. This is common in Noonan syndrome children. So we saw a geneticist and got tested and that’s when we got the full diagnosis that Will had Noonan syndrome. We were able to get tested ourselves, my wife and I, and proved that we were not a, I guess I would say, did not have Noonan syndrome, so it was a genetic mutation for Will to get it.

A lot of children on the Noonan syndrome diagnosis, there’s different variations of it and some can have extremely difficult and challenging heart malformalities, which Will didn’t have, thankfully. He had a few other little things, but for the most part, Will was good. He was a late talker but he was really fine. Pretty typical kiddo. We later had our daughter, Callie. She was born a couple years after Will. She was fine. And we had our third kiddo four years after that. Brooks, he was fine. We just didn’t have a whole lot of involvement and not a lot of run in with special needs. And so that was our situation up until about three years ago.

Three years ago, COVID is going on. We were both fortunate enough, we both could work from home at that time. And instead of working from home in Nashville with kids being home from school, both my wife and I have moms that were retired, not working. So we said, let’s go somewhere warmer and work for a little bit. So we went down to the Florida panhandle. And it was early May, 2020. It was Cinco de Mayo! Will said, my oldest said we need to go have a holiday today cuz it’s Cinco de Mayo. We need to go play. And so I took my son Will and my daughter Callie to go out on scooters.

So public service announcement, make sure your kids have helmets. We did not. And it’s the classic one more time, let’s do one more run. And we did that and Will fell. And when Will fell, I was mainly worried about broken arm, legs, things like that. He had scuffs on his knees, and of course he was crying. He had hurt himself, but he had one little scuff, just barely above his right eye. Not much. It was hardly even bleeding. Really it wasn’t much.

We took him back to the room. He was complaining about light, had a headache, so we gave him Tylenol. We called the pediatrician. They said, give him Tylenol. He thought it may be a concussion. And monitor. If things get worse, obviously call back. And so he threw up about 20 minutes after we gave him the Tylenol and that’s when we thought, okay, he’s got a concussion. Let’s take him to the ER and just make sure everything’s good. And when I picked him up to carry him out the door, he became nonresponsive. And so according to Google Maps we’re like seven minutes from the little ER there in Panama City. It was a little standalone ER. And so it’s like, well, we can get there quicker than calling 9-1-1, so let’s go.

So we got him there. Got him inside. Again, COVID is going on, so they wouldn’t let my wife in, but they want you to fill out paperwork when you’re coming in the door. It’s wait, my kid’s nonresponsive. So charge nurse comes out, grabs Will immediately, puts him on the cart and realizes his pupils are not responding. They’re shining a light in his eyes and they’re realizing his pupils aren’t responding.

And she said, this is bad. If your brain is swelling, it’ll push down on an optical nerve and that’s why your pupils don’t respond. So longer story but to shorten it, they ended up, couldn’t do anything right at that ER. They had to get some specialized EMTs in. They got him and took him to a little regional med center there in Panama City. And they cut about a quarter-sized circle out of his skull and took about 3+ hours, give or take, to stop the bleeding.

And he would storm. We were in a little PICU. It was a little four-bed PICU, and they called it storming. A horrible feeling. You’re sitting there watching your child with all the wires, intubated, they’ve shaved half his head. His eyes are open, but nobody’s home. He’ll storm. He’s sitting there shaking, almost like looking at a seizure kind of thing. And so finally on the morning of the 7th, the doctor, Dr. Herbie was the gentleman’s name, very good gentleman. He said, we need to get you back to Nashville. We don’t have the resources to support your son. You need to get home. And again, some people may not believe in a God or… We do. We’re spiritual folks. We’re Christians. And coincidentally on that day, the airplane that Vanderbilt has was scheduled to go to Kansas City, but the paperwork fell through. So they had the plane ready, it was ready to rock and roll. So instead of going to Kansas City, they flew down to Panama City, got my wife and my son, and they got him here.

A couple days after he got here, they ended up cutting out more of his skull. They couldn’t keep his intracranial pressure down, his ICP. The people here at Vanderbilt, Vanderbilt Children’s is what a lot of people call it. The people here on the PICU floor are amazing. We’ve been to Vanderbilt for a lot of other of WIll’s things before this, and we always knew there were special people there. But during this experience, not that you want anybody to ever be in the PICU but if you’ve gotta be in one, I would recommend Vanderbilt to anybody.

So they ended up cutting out more of Will’s skull because it still couldn’t keep the pressure down, and that would allow the swelling to protrude out of the section they cut out. So we were there for several weeks in the PICU. Still nonresponsive the whole time. And then we got moved to a regular floor after they felt he was stable enough. They finally felt we were ready to be moved to an inpatient rehab facility which Tennessee doesn’t have. We’re currently actually trying to help build awareness for Tennessee, for Monroe Carell to get one.

So when we were up there on that regular floor, Will, you could tell he was starting to come to a little bit. His eyes are open. You could see a little bit. And so my wife would hold up on a piece of… it was a hand towel that you would get when you dry your hands. She would use that and an expo marker for the dry eraser in that room. She would write “mom” on there. She would hold it up to Will and would say, “Does this say dad?” And he would just barely turn his right hand, just do a slight thumbs up. You could barely notice it. And when my wife Catherine got to “mom”, that’s when he turned his wrist and it just, you like, oh, he’s there. He is there. It was just such a wonderful sign to see that. Just that my boy is still in there.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now back to the conversation.

Adam Terry: We got bused on an ambulance from Vanderbilt down to Atlanta. We were fortunate enough to go to the Children’s Healthcare of Atlanta, the Scottish Rite facility. And so we went there for inpatient rehab for the next little over a month there.

So recapping time: we got into Vanderbilt on May 7th, we were discharged from there on June 12th, and then we stayed in Atlanta till July 21st. And in Atlanta, they worked with him on physical therapy, occupational therapy, speech therapy, feeding therapy, all of it. And during Monday through Friday, it was six sessions. They were 30, 45 minute sessions. And on the weekends, It would be three sessions, about 45 minutes to an hour. And so we would trade off nights. We found a little apartment down there. My wife would stay with him most of the time during the week, and then I stayed the weekends. We would still switch some.

I just started my current job while down there actually. It’ll be three years ago in June. So we were down there for a little over a month trying to help get him stabilized. And when we got discharged from there, we weren’t sure if he could hold his head up for the ride home. So he was nonverbal, he couldn’t talk. He still wasn’t eating, couldn’t walk, could barely move his arms. He was in a wheelchair. The chair was slightly leaned back cuz his head would fall down. His body mass had depleted so much from just being in the bed for so long. But he was adamant though, when we left [laughing] the hospital in Atlanta, we had to go to the zoo! Will loves animals, and it was again, middle of July hot, humid Atlanta. He didn’t care. We were going to the zoo before we went home. And you know, that’s something we’ll never forget. Anyway we went to the zoo, came home, had a lot of folks and a lot of blessings of people coming by the house and a lot of people helping us. And for the past two years and 10 months, we’ve been just continuing the work through therapies.

Will now can walk. We keep a hand on him. We keep what’s called a gait belt. It’s a rather thick kind of fabric belt that we keep on him, and we keep a hand on him. He can walk pretty good, but if he falls, his arms aren’t quick enough or strong enough to catch him. He’ll fall pretty hard. He’s still nonverbal. He can make some noises, but he’s not saying any words really. Sometimes he can get “mom”… When he doesn’t think about it, and when he gets fired up enough, he can get “mom” out pretty clear. But consonants and other things he can’t get “dad” out. But he sign languages now. We’ve not learned full ASL but he finger spells everything, so we’re able to communicate with him.

He’s just finishing fifth grade and he’s pretty much on par with his classmates. So even though he’s technically got some brain damage… He had a stroke actually from the brain bleed. He actually had a stroke. And so that’s what we’re doing is learning how to move, learning how to talk, learning how to eat, learning all of these different things but he’s come so far. We’re so fortunate to be where we are that, I don’t think I said this, but the doctor, the neurosurgeon that did the work down in Panama City pretty much told us she didn’t expect him to live. So the fact that I’ve got three kids and not two, and the fact that Will just has even improved even a little bit since then, can I ask for more? Sure. The greedy side of me wants to see him get all of his skills back, and he may not get any more than what he has.

But we’re so fortunate to be exactly where we are, and his story continues. We’re so blessed. He’s, I think, impacting a lot of people. My kids are having more awareness of special needs folks. We do a – we’ve done two of them now and we’ll do one this summer – triathlon. Vanderbilt here does kind of a special needs triathlon each year, sometimes they do two, where they help kiddos that have different disabilities, different challenges, and they help ’em run, walk, swim. And it’s the best thing. I mean, you go to that, you cannot not have a good day when you’re there watching those kids. You just can’t have a better day. Last year, my daughter, actually, something happened where her little buddy that was supposed to be with her wasn’t able to come, so my daughter did it with that girl. And still, I think they occasionally write notes to each other.

I think it has broadened our horizons. And not that we weren’t I don’t wanna say passionate about healthcare, but I think we’re even more now passionate about us getting more involved with special needs. And they’re trying to do an inpatient rehab facility here in Nashville. Any child in the state of Tennessee has to get bused out to another facility. And a lot of people can’t do that. We were fortunate enough we could go and work from somewhere and a lot of times that’s not possible. So that just, that makes your heartbreak to watch some kids that have a chance to have some improvement that’s gonna impact their full life. From this day forward, every day that Will does therapy and gets a little bit better, that’s a building block for him for the rest of his life. And if some kiddo’s not getting that, that impacts their whole life.

From the conference that you held on May 20th, hearing other dads talk about early intervention, we learned a little bit of that about Noonan syndrome, getting in front of that early. There’s actually a Noonan syndrome conference that they do every other year. And we went to that one year and what we gathered from that was monumental. To the dads out there, anyway you can try to find things and get out in front of as much as possible. I’m not the most social media person, but Facebook or through this network, try to find folks that can help you get in front of things is really monumental. I appreciate David, you doing these. This is so key to help dads network and to help learn from each other so that we, being passionate dads, can get in front of some of the challenges that our kids may face and we can make it better.

David Hirsch: Yeah. Thanks for sharing that extraordinary story about Will’s traumatic brain injury and all that he’s been through, you and Catherine and the rest of your family have been through. It is a miracle that he is alive and that he’s starting to thrive again. And I’m hoping that the story just continues to get better and better.

And I wanna go back and wonder if there was any meaningful advice that you’ve received that you can pinpoint over the last two or three years that said, hey, that really gave us some insights, that really made a difference.

Adam Terry: I think just buildup of having a lot of the mentors, having my dad, my grandparents, having my family, the church, having so many people leading up to this, you can’t prepare for it, but still help build maybe some of the character to help you get through it. And we still have tons of challenges. I know one of our darker moments early on, a family that had twins, one of their daughters wasn’t supposed to live. She’s now I think, 16. And I remember them telling us, God’s bigger. For them, it was bigger than the heart defect that their child had. God’s bigger than Will’s brain injury and the intracranial pressure that he’s having. And so that was one thing. Now, I say that, and I’ve said this at church, it hasn’t made me question my faith. I would argue I’m a stronger believer, but I still don’t know… There’s another family at church, they lost their oldest kiddo to cancer. And I don’t know how do you tell them God’s bigger than cancer and then it doesn’t play out the way they anticipate? Now that family has since gone on, and I think they have said their faith is deeper. They now lead a class at our church called “Life After Loss,” and they help many people deal with that.

I don’t know that I’ve got a great answer for you, David, other than I think for me is just having a lot of character built through a lot of other experiences. And so there are times when I maybe don’t wanna get in that cold swimming pool. [laughing] They’re jumping in there and it’s cold, or they’re wanting to throw a ball and I’m in the middle of work or just finishing a call and it’s five o’clock and I’m trying to write some notes up on it and they’re ready to go. And I try to tell myself, don’t pass this up! They’re wanting to play. Go do that and you can come back and write notes later. Just hearing – I remember that guy, Jeremy Lloyd’s his name – talk about just being the best dad he can possibly be. And I remember that. And sometimes, just that little comment makes me get up off the chair in front of the computer screen and go help hit a few whiffle balls or whatever it may be. Go on a walk with my daughter. That’s a nice little kick in the pants to make sure I’m doing what I need to be doing as a dad.

David Hirsch: Yeah. Thanks for sharing. I can give you a preview, an extension of what you were just saying, is that when your kids want to do stuff, particularly with you, you I think always want to err when you get to that fork in the road to be engaged, right?

Adam Terry: Yeah.

David Hirsch: To the extent that you can. You can’t do it all the time. And then as that plays out, as they get to be older, “Dad, let’s do this, let’s do that.” One of those situations I found myself in was one of my daughters wanted to go skydiving, and she couldn’t convince any of her friends. She convinced all of her friends to do it, but none of their parents would let their kid go skydiving. And we had told her that when she turns 18 she could go skydiving again. And she said, “Dad, none of my friends can go skydiving. Would you go with me?” And I’m like, oh, geez, I already checked that off my list. But we went skydiving again! [Adam laughing] And it’s like an out of body experience jumping out of an airplane. Now, let me be very crystal clear. This is tandem skydiving.

Adam Terry: That’s right.

David Hirsch: You are attached to somebody else. You are along for the ride. You don’t need to do anything other than just hold your breath and pray that nothing’s gonna happen. And it’s exhilarating! And as our kids have gotten older, and my kids are quite a bit older than yours, they’re 26 to 34, if you start saying no to too many things, they might stop asking, right?

Adam Terry: That’s right.

David Hirsch: So I’ve tried to err on the side of saying yes whenever I can even if it’s frightening or if it just seems illogical.

Adam Terry: Make sure your life insurance is paid up. [laughing]

David Hirsch: That’s what my wife’s major concern is. Yeah. As long as your life insurance is paid up, you can do anything you want. I’m curious to know what impact Will’s situation has had on his younger siblings, or your marriage, or your extended family for that matter.

Adam Terry: For the siblings, my youngest, Brooks was really young when it happened. He was two, so it’s almost kinda all he knows – almost. My daughter was there when it happened. She blames herself for part of it…

David Hirsch: Hmm.

Adam Terry: …even though it’s not her fault. I’m the one responsible for it. And I would say David, that’s something I’m still struggling with is trying to help her understand it’s not her fault and trying to help her through some of that. She’s a jewel. She’s an absolute jewel. And I think, again, just having more awareness. Not that she didn’t before, she’s always had awareness of people. She’s been wise beyond her years. But I think, again, it just brings more awareness. There’s no question she’s more aware of it and she wants to try and help do what she can. So that’s good. But again, I would say a challenge for me is just still trying to make sure I’m giving the two of them the investment that I’m giving Will. That’s a challenge, but they’re good. It’s what they know. They’ve embraced it and they understand it and have more perspective now I would argue than what they’ve had before. So I think, I hope, it’s enriching their life from one standpoint because it’s giving them perspective that I think a lot of other kiddos their age would not have.

For the family, it’s definitely helped bring, I think, all of us closer together in that we’re fortunate as the five of us… We coincidentally bought a camper right before Will got hurt. In about three years, a little less than three years, we put about 20,000 miles on that thing.

David Hirsch: Oh my! [laughing]

Adam Terry: Because I want to take them to go and see as much as I can. I want them to be able to experience as much as possible cause we’re not promised tomorrow. So anytime we get a chance, I wanna take them to go somewhere. And again, I think it continues to build that closeness with us. As they get out of school, and now that it’s not school nights, they [chuckles] all wanna sleep in Will’s room. They just wanna be together. And so it’s just funny hearing the three of them in there at night laughing and snickering, which they maybe would’ve done that beforehand, but they definitely do it now. And so there’s a closeness for the five of us and so that’s been fun.

But even for extended family, the story has brought I think all of us together and then so many people around us. It’s just been a big impact and the story impacts people at other places. At Will’s school that he was at before, he was at a place called Percy Priest Elementary School, and that place, I think that’s a great school and we benefited from him being there. And I may be overstepping my bounds a little bit, but I think they benefited as well from him being there. And the school he’s in now, I would argue the same thing. And so it’s continuing to build awareness for kids with different challenges and it creates opportunities for people that maybe rise to the occasion, challenge themselves to do things that they maybe wouldn’t have done. Stretch ’em a little bit. At the end of Will’s school here in fifth grade, they did a talent show and Will got up there and did a nunchuck routine [both laughing] and the place erupted. The kid before him did a legitimate nunchuck routine and Will got up there and did his, and the place erupted. And you wanna smile, you wanna cry, all of the above. It’s just so many emotions and so much fun. His story is, it’s neat how it’s impacting a lot of people. It’s making a lot of awareness. It’s helping obviously people close to him grow.

And then he’s become, I’ve heard me say already several times about being involved with Vanderbilt, Monroe Carell Jr. Hospital. His story is being leveraged by the hospital to help try to build awareness to get that inpatient rehab facility built. And I don’t know, they might use our story for other things, but right now that’s what we’re passionate about and working with the doctors and with the therapists there to try and get some of that built here cuz that’s… How do you, how can you pay it forward? I don’t have the money to build the facility, that’s for sure. It’s like a $40 million facility. But if we can help try to spread awareness, help people understand the need and try to help set it up so other children going forward can have that benefit, how can we not do that? How can we not do that? Same thing again, like what we’re doing here as you’re doing, how can we help other dads try to avoid pitfalls or get out in front of things a little bit sooner? It’s such valuable information.

David Hirsch: Yeah. Thanks for sharing. Very inspiring. And you’ve made reference to it a couple times, but I wonder what role has spirituality played in your and Catherine’s life?

Adam Terry: Obviously, I believe what I believe, and I’ll try to encourage others to believe that, but I think it plays a pretty critical role in helping people through some difficult times. I know when we were in the PICU, there were other families there and hearing the nurses talk, there were other families that… Sure, we definitely had a lot of challenges, a lot of scary moments where we thought we might lose Will. I had nothing else to base it on other than what the nurses would tell us that other families struggled a lot more with it than what we did. There was maybe anger, maybe a lot of other emotions that would come out and sure, I could argue there’s been many of times I’ve questioned why this happens to Will and happens to us, but I still think for us and what we believe, God has a plan and he can make good things happen from bad situations.

I don’t think He caused it. I don’t believe that. He gives us free will. It’s my fault. I’m the one out there. I gave the green light for us to go on scooters. I gave the green light to be out there without helmets on. I gave the green light on all that. That’s all me. Anybody responsible for this, it’s me. But God can turn a challenging story such as this and help do what I think He’s doing – building awareness, building perspective, and trying to help turn this challenging story into a better story. Some maybe would say redeeming story, but turn it into a good story that I think in the long run is gonna help so many other people that maybe wouldn’t have had that before. I don’t know. I don’t know if this is the story that tips the scales to potentially make some other things move in motion. But to answer your question directly, for us, it’s been a very impactful part of our journey. It has helped us cope with a lot of the challenging times that we’ve had over the last three years.

David Hirsch: Yeah. Thanks for sharing. It’s palpable. And I hope that it’s just the beginning of this story, still toward the beginning of this story and that what will evolve over the not just years but decades to come, will bear out the real story, the full story if you will.

So I’m thinking about advice now and I’m wondering if there’s any advice that you can offer to parents, specifically dads, that comes to mind based on your experience.

Adam Terry: I’m careful to give advice cuz I’ve definitely not done a whole lot right. [laughs] But I try to give just things, I’ll give comments based upon my experience. I’ve been fortunate enough to be, as we’ve commented, be raised in a Christian family and have the beliefs I have. I’ve been fortunate enough to have the family around me – my dad, my mom, my grandparents, my grandpa that I talked about earlier. I’ve been fortunate enough to have those people be around. So I’m learning something new every day. I’m learning a lot of what not to do, and I’m learning maybe what to do. So maybe if you don’t have a good example, turn that story around. Try to turn that story into being a dad that you wanna be and you’ve got examples of maybe how you don’t wanna be. I think that’s important.

Having a great core family is super important to special needs parents, I would argue. I think surrounding yourself with good people. People that don’t… I’ve heard someone once say before, like a joy stealer. Try not to be around someone that brings you down. You can’t hide in a box, you can’t hide from people like that. You can try to encourage them, but you don’t want to have them pull you down. You need to be around good people that are encouraging you as well and you should try to encourage others. Just like I think about that family that told me, God’s bigger than Will’s brain bleed. And just having good people help insert some of those nuggets of wisdom and some of the experiences they’ve been through has helped us along our journey significantly.

I’ve done a lot of things wrong. And I don’t have the best advice, but I think trying to surround yourself with good people, be hungry for knowledge, be hungry to go learn as much as you can about your kiddos, and if it’s a special needs situation, try to get out in front of that. Coincidentally, my wife, being the awesome wife she is, found through Facebook the Noonan syndrome group. In the conference, we learned so much from that that helped us get in front of a lot of things that we maybe… It built our confidence in the decisions we were making. Even more so now with Will’s injury, his traumatic brain injury, TBI. Again, I’m trying to talk with people that have familiarity with this. And trying to get out in front of things that we’re continuing to run into. And build relationships with those people. It’s just so important. The relationships that you can build and have good people around you, I would argue it’s just very critical to the journey. So I would say that’s my top things I would say.

David Hirsch: Thanks for sharing. The two that resonated with me were you can learn from a lot of different examples. And the way I phrase it, Adam, is that you wanna live vicariously through those that are not getting it right and trying to emulate those that are getting it right. And the second was surrounding yourself with good people. And it’s easier said than done, but if you’re not comfortable or you’re not around the right type of people, whether they be family members or friends or others you do have a choice to limit your exposure to the negativity that some people seem to have or arouse. So thank you for sharing. And I’m wondering why is it that you agreed to be a mentor father as part of the Special Fathers Network?

Adam Terry: I think that’s it. How can we try to give back? So many people have given to me and my family and helped us so much. How can we try and help others? That’s what it’s all about. This network, as you talked about, surrounding yourself with good people. Oftentimes even just like the, my nephews or the little class I teach over at school occasionally, like you can learn more from the people that you’re probably menteeing than from others. So there’s so much value in relationships and I think this again, sounds greedy. I generally, I get more out of it than the people I’m talking with. Again, that’s just trying to pay it forward and how can I help do and help others. That’s been done for me. How can I not do that? I have to do that with the blessings that have been given to me. I have to do that.

David Hirsch: We’re thrilled to have you. Thank you for being involved and I’m wondering if there’s anything else you’d like to say before we wrap up.

Adam Terry: I don’t have anything earth shattering. I think surround yourself with good people and just keep doing the best you can. I loved from the 21st Century Dads conference that was on the 20th. I don’t remember the gentleman’s name that spoke first. I missed the first part of it, but right at the end he talked about that constant forward motion.

David Hirsch: Frank McKinney.

Adam Terry: Yes! Running the 135 in Death Valley. My brother went out to Death Valley last year and you… Just wrapping your head around the temperatures and how you’re so far below sea level and wrapping your head around that and how the human body can do that. You can challenge yourself to do a little bit more. So just keep that constant forward motion. Find the direction you need to go and keep that constant forward motion. One foot in front of the other. Don’t think about the whole 135 miles. Do just the next step and the next step and keep working through that. And you’re gonna get closer to where you wanna be. And you’ll have to kinda look up and course correct a little bit, but just keep doing it, one foot in front of the other. That’s it. One day at a time. That’s all we can do.

David Hirsch: Yeah. Thanks for recalling those words of wisdom from Frank McKinney. Let’s give a special shout out to Matt Rehbein for helping connect us.

Adam Terry: Yes. Appreciate Matt helping connect the dots.

David Hirsch: If somebody wants to learn more about your situation or to contact you, what’s the best way to do that?

Adam Terry: Probably email. My wife does the social media stuff that I’m not good at. But for me, my email is terryad70@hotmail.com. So shoot me. That’s my personal email. I’m not probably the quickest response there, but I do get to it eventually. I keep my work email generally in front of me most of the time, but that email address I’ve had for decades. And if someone needs something, they can shoot a note there and we can connect. And again, I’m glad to help any way I can. I just appreciate this time, David.

Obviously we’re one story. There’s so many other stories out there of other families making a difference. And so if someone needs a little help and think I can do it, I’ll be glad to help or whatever they may need. We’ll do our best to try and help out where we can, but we’re just one story. There’s so many other important stories out there and I just appreciate you helping bubble these up so people can listen and learn and grow together. Thank you.

David Hirsch: Yeah, we’ll be sure to include that in the show notes and some of the other references you made, so it’ll make it as easy as possible for people to follow up with you or to find these resources. Adam, thank you for your time and many insights. As a reminder, Adam is just one of the dads who’s 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.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Adam, thanks again.

Adam Terry: Thank you, David. Really appreciate your time.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. 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 match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.

Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.