Fatherhood is a journey filled with highs, lows, and countless unexpected turns—something this week’s episode of the Dad and Daughter Connection beautifully illustrates. Host Dr. Christopher Lewis welcomes Steve Harris, author of Dads Like Us: A Survival Guide for Fathers Raising a Child with Disabilities, to share his personal story, hard-won wisdom, and practical advice for fathers facing one of life’s greatest challenges: raising a child with special needs.

From the very beginning, it’s clear this conversation isn’t just for dads of daughters or even just for dads of children with disabilities—it’s for anyone committed to being present, adaptable, and truly connected as a parent. Steve’s authenticity shines as he reflects on meaningful moments with his sons, the heartbreak and resilience of navigating medical crises, and the importance of simply “being there.”

One of the standout themes throughout the episode is the need for self-care as a caregiver. Steve reminds us that fathers, especially those facing long-term challenges, must take care of their own mental, emotional, and physical well-being. “The stronger we are as dads, the better dads we’re going to be,” he shares—a lesson learned through years spent in hospital rooms and therapy sessions.

The episode also tackles often unspoken emotions: grief for the future you envisioned, anger at situations you can’t fix, and loneliness when you feel pushed to the sidelines. Steve offers compassionate advice: acknowledge your feelings, reach out for help, and remember you are not alone. He encourages dads to stay involved, advocate for their children, and celebrate the unique gifts and victories—big or small—that each day brings.

Perhaps most poignant is Steve’s advice for those just starting this journey. In the first bewildering days after a diagnosis, he urges fathers to resist the urge to isolate, reach out to loved ones, and move through grief towards gratitude for the child in front of them.

For anyone on the path of parenthood—especially those facing extra challenges—this episode is a supportive, practical, and inspiring listen. Don’t miss it. Tune in to hear how showing up, adapting, and loving unconditionally shapes both father and child.

Listen to the full episode of the Dad and Daughter Connection wherever you get your podcasts, and discover more stories and resources at dadanddaughterconnection.com.

TRANSCRIPT

Dr. Christopher Lewis [00:00:02]: Welcome to the dad and Daughter Connection, the podcast for dads who want to build stronger bonds and raise confident, independent daughters.

Dr. Christopher Lewis [00:00:12]: If you’re looking to build a stronger bond with your daughter and help her grow into a confident, independent woman, you’re in the right place. I’m Dr. Christopher Lewis, and the dad and Daughter Connection is the podcast where we dive into real stories, expert advice, and practical tips to help you navigate the incredible journey of fatherhood. In every episode, we’ll bring you conversations that inspire, challenge, and equip you to show up as the dad your daughter needs. So let’s get started, because being a great dad isn’t just about being there. It’s about truly connecting. Welcome back to the dad and Daughter Connection, where every week we have a great opportunity to be able to learn, to grow, to be able to become those fathers that we want to become for our children. And every week, we do that with an opportunity to be able to meet other dads, dads with different experiences that can share some of the things that they have learned to help you in the journey that you’re on.

Dr. Christopher Lewis [00:01:16]: And it is a journey because every day is going to be a little bit different. Every day we have to work, work to build those relationships with our children. And it is important to be open to the idea and the thought that you have to put in the work. You’ve got to put in the work. You got to be willing to learn, to grow, to be able to be that dad that you want to be. And that’s why every week I come back and I know that you come back to be able to learn from other fathers. And today we got another great guest. Steve Harris is with us.

Dr. Christopher Lewis [00:01:49]: And Steve is a father of two sons. And we’re going to be talking about the journey that he went on and a book that he wrote called Dads Like Us, A Survival Guide for Fathers Raising a Child With Disabilities. And we’re going to talk about his own journey. As I said, he had two sons. One of his sons has passed. And we’re going to talk about that journey with his own sons, as well as the book and some things that you might want to think about, especially if you’re raising a child with a disability. And I’m really looking forward to having him here today. Steve, thanks so much for being here.

Steve Harris [00:02:23]: Well, thank you, Chris. It’s honor to be talking with you today.

Dr. Christopher Lewis [00:02:26]: Now, one of the things that I love doing at the very beginning is talking about you as a dad. And many times I talk to dads with daughters. You have sons. But many of the questions that I ask are very much related to just being a father. So I’m going to ask you some similar questions that I ask to dads with daughters, and we’ll go down that pathway. So as you think back to the time that you had with both of your sons, what’s one meaningful moment that you shared with them and what made it so special?

Steve Harris [00:02:55]: Wow, there have been so many. I have two sons, Andrew, who’s now 37, and Matthew, who passed away, almost made it to his 40th birthday. So we had a long journey. And I can think of a moment with Matthew especially, I mean, comes to mind. First, sixth grade graduation. He had been able to be in school with a lot of special help and support from the teachers and paras there. They had a graduation ceremony. For some reason, Matthew was kind of verbal, not hugely verbal, but he could say things in moments that had a lot of meaning.

Steve Harris [00:03:24]: They invited him to come up to the podium and address his rather large crowd. I was kind of nervous watching that all taking place, but Matthew wheeled up to the microphone, had a big smile on his face, and just said thank you. And for me, that was an amazing moment. It was very simple. Maybe to others it would not seem like a big deal, but the fact that he had made it in his life through all kinds of physical challenges and that he would sit there in his wheelchair and say thank you and be grateful. Wonderful person. Meant a ton to me that he did that. Andrew played a lot of, we call them handicapped sports, but adapted sports in high school, became the co captain of his adaptive soccer team.

Steve Harris [00:04:02]: He was able to show some leadership and be a leader in a situation that was difficult. And I’m hugely proud of my boys. I’ll say that I’ve got a million moments like that, but those were two.

Dr. Christopher Lewis [00:04:14]: As your sons got older and you continued to help to guide them in the journey that they were on and becoming the adults that they became. How did you balance guiding your sons while also giving them the independence that they needed to be able to grow into their own person?

Steve Harris [00:04:34]: Well, the situation that they faced, they both had inherited a pretty, very rare genetic condition called Polysius Mersbacher disease. We didn’t know that right at first, but. And Matthew was also born with spina bifida. They had so many physical challenges and long hospital stays, and they’ve had a lifetime of tough stuff. I have tried to appreciate them as individual people, that they are unique persons, you know, made in the image of God, with a potential for their lives and trying to find out in lots of different ways what that potential could be, I guess. Chris, I’ve just tried to love them. I’ve tried to be there for them. I’ve tried to, through ups and downs, tried to show them that they are totally valuable, priceless people, as valuable as anybody else who walks the face of the earth.

Steve Harris [00:05:22]: That they’re very special. And I can’t think of one exact strategy I had other than to hopefully be their loving dad.

Dr. Christopher Lewis [00:05:28]: What are some intentional ways that you worked with your sons to strengthen that bond with them, especially during challenging times?

Steve Harris [00:05:35]: Well, I guess number one would be being there. That sounds kind of simple, but the sad truth is that I talk about it in the book and stuff and other places that dads of kids who are disabled, they have a unique journey. It’s a tough journey. It means that we are. I don’t know if you agree with this, Chris, but I think dads are kind of wired to be the fixers and the protectors of our kids, definitely. So when we get into the life that we live as the dads of children with disabilities, most of the time we can’t be that. We can’t be the fixer, we can’t be the protector. And that can be frustrating.

Steve Harris [00:06:07]: It creates all kind of different conflicts and emotions for us. But I’ve tried to be there for them. Again. A sad statistic is that many dads don’t stay involved in the lives of their kids when they are disabled, thankfully, as a small percentage. But just trying to hang in there. I think, number one, just being there has been a huge challenge and very important challenge for me in my life.

Dr. Christopher Lewis [00:06:29]: What would you say is a mistake that you made as a father and what did you learn from it about fostering positive connections?

Steve Harris [00:06:37]: Dads of kids who are disabled are caregivers. All dads are caregivers. But I think we’re given a challenge to be a caregiver over a long stretch of time. It takes a lot. And I think a mistake I made early is maybe not taking care of myself, not realizing that if I was going to be the best dad I could be. I’m talking about a situation where Matthew was in. Lived in an intensive care ward of a hospital for the first year of his life. It was a very stressful and demanding experience.

Steve Harris [00:07:06]: It made it hard to live a really good, balanced life. And I think looking back, I should have taken better care of myself mentally, physically, emotionally, spiritually, right away. I. I think that sometimes in our quest to be great dads we may forget that we also have our own personal needs. And at times that sounds and feels selfish, and it sounds selfish to say that, but the stronger we are as dads, the better dads we’re going to be. That needs attention. It needs taking care of ourselves, making good choices. Sometimes in the crisis moments, that is very difficult to do, but I guess that’s one I would say.

Steve Harris [00:07:40]: I’m sure there are others. I’m sure there are many, but I’ll mention that one right now.

Dr. Christopher Lewis [00:07:44]: Now, I know you mentioned the book, and as I said at the beginning, you wrote a book called Dads Like Us, A Survival Guide for Fathers Raising a Child With Disabilities. And I guess first and foremost, before I delve too deep into the book itself, give me the origin story of this, because I’ve written a book myself. I know how much time, effort, passion goes into these passion projects. But tell me about the. The journey and what made you decide that you needed to tell this story and that you needed to get it out into the world.

Steve Harris [00:08:19]: That’s a great question. It’s one that I have a Won’t say. It’s an easy answer, but I have an answer. My son Matthew, my first son, was born on October 13, 1980. It was a very exciting day in our lives. Our first child. Things in the hospital early on were just going beautifully, just perfect. When they discovered that Matthew had spina bifida, which is right away, things kind of came crashing down all of a sudden.

Steve Harris [00:08:43]: Was in a very precarious situation. They didn’t know if he was going to make it out of the delivery room. Anyway. In that room was a number of nurses, but one of them, I noticed, was actually feeling quite excited and happy about the whole situation. And it struck me that she had that big smile on her face and she said, you know what? This is quite a coincidence. I’m taking a class on spina Bifida. Within about 20 minutes after they had rushed Matthew out of the room to take him by ambulance to another hospital for surgery, she came back to me and she said, do you remember I told you I’m taking that class on spina bifida? This is the textbook we have for that class. And she wanted to hand me this big, thick book and said, you might want to read this.

Steve Harris [00:09:22]: My first reaction was a textbook on spina bifida. I don’t think I want to read it. I think I want to throw it at you right now, really, to be honest. But that moment, which was one moment of even a thousand of that day that I remember that moment planted a seed in me that what did I need at that moment as a dad, as a parent, to deal with the crisis that was unfolding for my son? It wasn’t a textbook. I am a writer. I have been writing stuff my whole life. But anyway, even in the first couple of months after that, I thought, there should be something for dads in those moments. And I started thinking about the need for.

Steve Harris [00:09:56]: To write a book or a desire or whatever to write it. Now, it took me 40 years to pull it off because I kept trying and starting and stopping. And then I realized, you know what? Maybe I have to live this before I can write it. And that’s exactly what happened over the years. Just learned a lot, experienced a lot, met tons of people, had experiences with my sons, like we all do as dads. But these were all in kind of challenging settings. I thought, I am going to write that book someday. Because I read a statistic recently that said that dads who had spent a significant time with their kids in an intensive care unit, 50% of them said that they did not feel like they were getting the information or support that they needed.

Steve Harris [00:10:34]: And I thought, I can relate to that because you’re in a brand new world right away. So what is it those dads, dads like me, could need? And so I said, I’m going to write a book. I want it to be brief. I want it to be practical. I want it to be like a positive conversation between me and another dad saying, these are the. Some of the things you’re going to face. Here are some of the ways that that will help. Here’s my story.

Steve Harris [00:10:57]: It’s not a memoir, but it’s a lot of stories about my experience in those places. But basically to say, dad, you’re facing a unique challenge. Is it going to be tough? You’re going to make it. But here’s some practical advice as you head into that world.

Dr. Christopher Lewis [00:11:10]: And you said, it is a brief, practical book. It is. It is a brief and practical book. As I was in reading through the book, I know your book really does talk about grief. Not for the child that we have, but for the expectations that we lose. How can fathers process that sadness without feeling guilt or weakness?

Steve Harris [00:11:29]: First thing I would say is, you are going to feel sad, you are going to feel grief. There’s no shame in that. There should not be an embarrassment for that. We love our kids. They mean the world to us. So to see your child going through surgeries and physical disabilities, mental disabilities, there’s just a ton of stuff to feel sad about. So I do feel sad. I will always have a sense of grief about it, but kind of move.

Steve Harris [00:11:51]: Grief doesn’t go away. It evolves and changes. There’s a writer, James Autrey, in his book about gratitude, says there comes a point in time when you have to stop grieving the child who is not there and celebrating the child who is there. That was a powerful statement for me. It’s. It’s not a one time thing, but it’s letting go, realizing there’s going to be sadness. But you move on and love the child that you have. You’re sad because of some things that did not work out, sad for some dreams that never did come true.

Steve Harris [00:12:21]: But you have a wonderful, precious child in your life as your child and you’re the dad who can love him for who he is. So I accept the sadness, deal with it and move ahead, I guess now.

Dr. Christopher Lewis [00:12:33]: Also in the book you write about the fact that many dads feel invisible in the care process. What advice do you have for dads who want to be more than just helpers, but who want to lead?

Steve Harris [00:12:47]: Right. We need to be there. We need to be good advocates for our kids. I talk in the book about the fact that dads of kids with disabilities will watch a parade of people march through their life right from day one. Doctors, nurses, therapists, social workers, counselors, teachers, paraprofessionals. There’s just a parade. A lot, a lot of people come in. It is easy and I think there are some complicated reasons for this, but I think it’s easy for dads to kind of be pushed off to the side.

Steve Harris [00:13:13]: There are times in the hospitals, for example, when, and I think there’s some natural stuff going on here that moms are seen as the basic primary caregiving, nurturer person. Dads don’t quite know where they fit in there. Sometimes the people are working with, the dads don’t know quite where they fit. My advice or encouragement that I wrote about in the book was to dads that say, don’t let that happen. Make sure you get at the front of that parade. Make sure you stay there. Make sure that you initiate communication with doctors and nurses that is needed. Make sure that people see you as active, involved and key caregiver in the situation.

Steve Harris [00:13:46]: So yeah, my encouragement to all of us dads is to hang in, in there and, and stay involved at the front of all that’s happening with your child’s care.

Dr. Christopher Lewis [00:13:55]: What were some of the most unexpected or we’ll say joyful lessons that you learned from your sons. Maybe things that reshaped how you thought about parenting.

Steve Harris [00:14:07]: Both of my boys have faced immense physical and mental challenges. The disease that they have is progressive. It’s incurable. It’s been a journey of learning to take one day at a time and enjoy each day and to be thankful and grateful for each day. Sometimes we want our kids to succeed. We want them to be, you know, the star athletes and the best students and getting the big scholarships. And we have dreams for our kids. My boys have taught me that more about what’s really important in life, what the priorities are in life, what’s.

Steve Harris [00:14:41]: What are the most valuable things in life. I wrote a chapter in there about pride. You know, it’s. It’s different for dads like us. We find different things to be proud about, and yet we come away with a greater appreciation and love for our kids than we maybe we ever would have had before. One doctor told me that he said, you, son Matthew can’t do many things. He can’t walk, he can’t talk, he can’t eat normally. He can’t really.

Steve Harris [00:15:03]: He can’t do many things, but one thing he can do is stay alive. And Matthew had a determined spirit, a courageous spirit through all those things and even, even above that, it was a spirit filled with smiles. He had a smile that melted the heart, heart of every nurse he ever met. I never once heard Matthew in nearly 40 years express any kind of bitterness or anger or early on when he had more mental capabilities. There was nothing negative coming from him. He was in many ways the most content person I ever met. And yet he was living in a situation that was incredibly difficult for him, with scores of operations and what we would call limitations. But he had a spirit in him that was incredible and it was amazing to watch.

Dr. Christopher Lewis [00:15:45]: Now, the book also walks through some common emotions like anger, loneliness and fear. How can dads navigate those strong emotions without getting stuck or isolated?

Steve Harris [00:15:56]: I would say again, number one would be just to acknowledge that they’re going to be there and you’re going to go through these different emotions. Don’t feel bad about that. Be aware of it. Don’t let them become destructive in your life. I think it means having a sense of. We’ll take anger, for example. I talk about sometimes get really quiet. They say that anger turned inward becomes depression, and that can happen.

Steve Harris [00:16:17]: But there’s also dads who get angry and they have eruptions. They have. They have times when they just explode. And I compare it to volcanoes. They Say that the worst volcanoes are the ones that build up and build up and build up and then they finally blast. Whereas if there are volcanoes that kind of let off a little steam here and there, it’s actually better because it doesn’t build to a point that’s so destructive. I think with anger, that can be true if you keep squashing it down, squashing it down. And all of us get angry about different things.

Steve Harris [00:16:45]: I think dads like us, we have situations in hospitals or with doctors and care decisions and things that kind of build up. But if we can learn to express some of the anger in really small doses, it’s better than waiting for some kind of a bigger explosion. That’s one example of one emotion.

Dr. Christopher Lewis [00:17:00]: Now, you talked at the beginning of this about your reaction to your first son being born in the feelings that you were feeling. What’s your advice to dads who are listening, who just got the news that their child has a disability? What should they do in the first 24 to 48 hours?

Steve Harris [00:17:20]: That’s such a great question. And that’s exactly why I’m thankful that it worked out that this book got written, because those first 24 hours, that first week is really crucial. So thank you for asking that question. What I would do if I was back there today, if today was day one, I would fight through the temptation that comes to isolate, to pull back. Sometimes there’s such a swirl of emotions that you really can’t function. You’re kind of in a mental. Mental fog. Take a breath, make sure that you’re, you’re.

Steve Harris [00:17:48]: You fight through the. Any temptation you have to isolate, talk to your wife, talk to people that you have that you’re close to. Make sure that you make some connection with them. You’re going to need people, and yet it comes at a point when you start to push them away. And that’s a dangerous point. So I would say, number one, pray. Number two, connect with the people that you love who will be there to support you.

Dr. Christopher Lewis [00:18:11]: Now you close your book with gratitude and pride. What would you say now to your younger self sitting alone in that hospital waiting room?

Steve Harris [00:18:20]: I’d say you are walking into a world that you do not, did not expect. You had hopes and dreams of having the normal kids that everybody else seems to have. That’s not going to be true for you. For whatever reasons and however life works, that’s just the reality of it. So face that reality and it will be difficult. And it’s not a one day, one week, one month process. It will be kind of a lifetime of adjustments. But face the reality, but also be aware that you are being in invited into a parenting experience that will change you in wonderful ways, that will open doors to wonderful relationships.

Steve Harris [00:18:57]: It is not. Well, I’ll quote, I’m sure that others who know about this stuff know this, but Emily Kingsley Pearl, welcome to Holland. Are you aware of welcome to Holland, Chris?

Dr. Christopher Lewis [00:19:08]: I’m not. Tell me more about that.

Steve Harris [00:19:09]: Okay. She was one of the original writers in Of Sesame Street. She wrote an analogy, apologies, probably 30, 40 years ago now, called welcome to Holland. And the idea is that parents who are having a child, it’s kind of like they’re getting a dream vacation to Italy. And so they get on the plane, they’re all excited, you know, prepared to enjoy Italy. The plane lands, the announcement comes over the loudspeaker, and they say, good afternoon, everybody. Welcome to Holland. And the parent sitting there says, well, wait a minute, I didn’t expect to be in Holland.

Steve Harris [00:19:39]: I’m going to Italy. And also, you find out you’re in Holland, you are in a place that you did not expect. You’re not prepared for it. And she said, okay, be disorienting. You can be angry about it, you can be frustrated. But she said, as you are in Holland, all of a sudden, there are challenges to it. It’s got new languages and new experiences you didn’t expect. But as you are there, you’re also finding out that Holland has Rembrandt and Holland has tulips and Holland has all kinds of joys and things that you did not expect and you did not prepare for, even think about.

Steve Harris [00:20:08]: But there you are in this new place and you can enjoy Holland. That analogy has helped many people. It helped me early on to realize that, no, I wasn’t in the place expected to be as a dad. I was in a world that presented all kinds of challenges. But over time, given time, and there are good days and bad days, but you realize that the life I’m living as a dad right now with my kids, with my two sons who are disabled, it’s an amazing, wonderful, rich, rich life. It takes you to places you didn’t want to go, maybe, but you’re very grateful that you went there.

Dr. Christopher Lewis [00:20:41]: Now, if people want to find out more about the book, where should they go?

Steve Harris [00:20:43]: Well, I have a website, www.steve harris author. They can look me up there. It’s also on Amazon and other places. If they want to contact me directly, I’ll send them a book. You know my dream about this book. Early on, this is probably naive. This was not about book writing thing. I wanted to just be handing these books out.

Steve Harris [00:21:02]: And my dream still is to have this book in every hospital in America because I think it’s a book for dads to read and for moms and family members. But I really hope that doctors and nurses, social workers and teachers and chaplains and counselors will read this book because they’re working with these men, they’re working with these families and these kids. I would love to see the sensitivity heightened about what these families are going through so that they’ll be supported because ultimately it supports the kid. A strong dad is going to be a better dad. And our kids are going to need all kinds of support to reach the potential that they have for their lives. A dad as important as any of them in that group of people who are helping. But I hope that the book gets read by all kinds of people out there, but especially by dads, of course. And I do hope that they’ll be passing them out in hospital rooms across America.

Dr. Christopher Lewis [00:21:53]: Now. We always finish our interviews with what I like to call our dad Connection six, which is an opportunity to get to know you a little bit more as a dad. Are you ready?

Steve Harris [00:22:01]: Sure.

Dr. Christopher Lewis [00:22:01]: What’s one word that describes your relationship with your sons?

Steve Harris [00:22:05]: Playful.

Dr. Christopher Lewis [00:22:06]: What’s the best piece of dad advice you ever received?

Steve Harris [00:22:10]: Be there.

Dr. Christopher Lewis [00:22:11]: What’s one activity that you and your sons love or love doing together?

Steve Harris [00:22:18]: Wrestling on the living room floor.

Dr. Christopher Lewis [00:22:19]: If you could give your son one life lesson in a single sentence, what would it be?

Steve Harris [00:22:24]: Be grateful and have faith in better things to come.

Dr. Christopher Lewis [00:22:27]: What’s one thing you’ve learned about yourself since becoming a dad?

Steve Harris [00:22:31]: I would say I have learned and am learning that I need not a great dad. I need help. And I guess learning to reach out for that help, that’s a longer answer. But learn to reach out for the help that you need for the challenges in front of you.

Dr. Christopher Lewis [00:22:44]: What advice would you give to other dads who want to build a lasting and meaningful, meaningful relationship with their kids?

Steve Harris [00:22:51]: Appreciate them for the unique individual that they are, that every day is new. You kind of said that in your opening introduction there. That every day is new. We grow, we change, they grow, they change. And be aware of that and connect with that each day.

Dr. Christopher Lewis [00:23:05]: Well, Steve, I just want to say thank you. Thank you for sharing your story, for letting us get to know your sons in a little bit different ways, and also for the book that you’ve created to help help other fathers that are raising children with disabilities to be able to help them to know that they’re not alone, but also to help them to negap to navigate the journey that they’re going to be on in a very practical way. We’ll make sure to put a link in the notes today to make sure that people know how to get access to that, but I truly want to say thank you and I wish you all the best.

Steve Harris [00:23:41]: Well, thank you very much, Chris. It’s a pleasure to meet you today and thank you for letting me share my story.

Dr. Christopher Lewis [00:23:45]: That’s a wrap for this episode of the Dad and Daughter Connection. Thanks for joining us on this journey to build stronger bonds and raise confident, independent daughters. Remember, being an engaged dad isn’t about being perfect. It’s about being present. If you enjoyed this episode, be sure to subscribe and share it with a fellow dad. And don’t forget, you can find all our episodes at dadanddaughterconnection.com until next time, keep showing up, keep connecting, and keep being the dad she needs.

Musical Outro Performer [00:24:16]: We’re all in the same boat and it’s full of tiny screaming passengers we spend the time we give the lessons, we make the meals we buy them presents and bring your A game Cause those kids are growing fast the time goes by just like a dynamite blast Calling astronauts and firemen Carpenters and muscle men get out and be the world to them Be the best dad you can be Be the best dad you can be.