384 – Steve Harris of Lanesboro, MN A Freelance Writer, Author, Widower, Husband & Father of 2 Sons With Disabilities Part 1

Transcript:

Tom Couch: Special thanks to Amgen for sponsoring the Special Fathers Network Dad to Dad Podcast. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

Steve Harris: I talk in the book about the flood of emotions that come, and one of them, I don’t know, I’ll, just say is anger. You get. There’s a frustration and anger because I’m supposed to be the one to make this not happen. And so you see it happening and it’s out of your control. You don’t know where you fit. You don’t know how to what if you’re not the fixer and the protector? Who are you? Exactly?

Tom Couch: That’s our guest this week, Steve Harris, a freelance writer, widower, authority, and father of two sons with disabilities. Steve’s life has had its share of ups and downs, including the loss of his first wife and his son Matthew. And we’ll hear his story in two parts. This week is the first part. Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. One Brief Message. The Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending the in-person weekend retreat scheduled this year from September 5th through the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind groups and join a group of like-minded dads to become the best version of yourself. It might just transform your life as it has done for so many others. For more information, please see the show notes or, simply go to 21stCenturyDads.org.

Tom Couch: Now let’s hear the first installment of this conversation between Steve Harris and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Steve Harris of Lanesboro, Minnesota, who’s a freelance writer, author, widower, husband and father of two sons with disabilities. Steve, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Steve Harris: Thank you, David. It’s a pleasure to be with you and to talk today.

David Hirsch: You and your wife Sue have been married for 17 years. You and your first wife Pam were together for 30 years before she passed away in 2012 due to a recovery rare neurological disorder. You And Pam had two boys, Matthew, who was born in 1980 with spina bifida, and younger son Andrew, who is 37, who has cerebral palsy. Very sadly, Matthew passed away in October 2020, four days short of his 40th birthday. Let’s start with some background. Where did you grow up? Tell me something about your birth family.

Steve Harris: I grew up in Santa Clara, California, which is a little bit south of San Francisco. They call it Silicon Valley now. But, that’s where I grew up. Well, let’s see. After high school, I came to Minnesota to go to school. Went to Bethel University in St. Paul.

David Hirsch: And when you were growing up, did you have any siblings?

Steve Harris: Yes, I’ve got a brother, older brother, three years older, and I have a younger sister.

David Hirsch: And out of curiosity, what did your dad do for a living?

Steve Harris: Well, a number of things. Our family originally was from Utah. My dad started off, after his high school years. He served in World War II, but then went back, as many of my relatives did, and working in coal mines in Utah. But then early, 50s, moved to California. He was in a retail business of different kinds over the years. He manager of a grocery store for most of those years and, jobs like that.

David Hirsch: What branch of the service was he in?

Steve Harris: He was in the Navy.

David Hirsch: Okay.

Steve Harris: He served in, the Philippines area.

David Hirsch: Yeah, well, there’s not that many of the greatest generation left anymore.

Steve Harris: No, no, he. He didn’t talk about it much. I. I have a few pictures that, give me a small feel for what he went through, but he did not want to talk about those kind of days. I wish he was around now that I could ask him questions, but I hear many people say the same thing.

David Hirsch: Absolutely. So I’m sort of curious to know. How would you describe your relationship with your dad?

Steve Harris: Complicated. Not close. There were some, hard issues in his life, personally that, kind of dogged him through his life that I think prevented him from really getting close to his kids. I have some special memories, you know. Know, we shared our love for baseball. He took me to my first baseball game to watch Willie Mays at, in San Francisco that I treasure. And, a few of

00:05:00

Steve Harris: those kind of things through the years. But he was not, I don’t know if it was him or, again, that generation. I don’t think he saw himself as needing to be close to his kids. I think he saw himself as a provider. That was, his contribution to our life was to make sure that we had food on the table and a house to live in. And he was very good at that. But, in terms of personal closeness or relationship, that never really happened. He had some, mental health issues of his own that caused, a lot of disruption. My parents divorced when I was, I’d say about 13. There was a lot of tension and conflict. So those are not, those are not pleasant memories for me. But God, put me in the, in the family that he wanted me in, I guess.

David Hirsch: Yeah. Well, when I think about, dads who are sort of providers, protectors, I think of that as being old school.

David Hirsch: We as a society didn’t expect as much from men a generation or generations ago as we expect today. And I think the world is a better place.

Steve Harris: Yes.

David Hirsch: That it’s not bad to have higher expectations.

Steve Harris: Right, right.

David Hirsch: For men and for dads today. So, you mentioned, that, one of the more positive memories was this baseball experience. Going to see Willie Mays. When you think about your dad, are there any other important takeaways that come, to mind?

Steve Harris: I wish there were more. I think that, going back to what you just said, we could call them kind of lower expectations. I think that’s kind of what they knew and what they, they thought was important. And so he fulfilled that role, you know, of taking care of our family. But, in terms of like, sitting down and talking or, you know, really sharing close conversations or guidance, never really happened. So I felt like I was on the fringes of his life. Not in a totally negative way. I have birthday cards and things in which he expressed, his, his love for me. But yeah, I guess thinking back, I don’t know, this, this matters to me. It’s valuable to me. You know, times at a baseball game or we live near the ocean, so times in Santa Cruz beach, you know, when we’d have family trips, they weren’t often. We rarely went on vacations or things. But there were times when, when things seemed to be working for our family and holding together. And then about junior, high years, they really fell apart. Never really, was in a peaceful situation with him again for the rest of our lives. And I’m sad to say that, but that’s, that’s the reality.

David Hirsch: Yeah. Well, sorry to hear that. that’s a little something we have in common. Not having, you know, optimal relationships with our dads. And it, you know, it shapes you.

Steve Harris: It does. Yeah.

David Hirsch: You know, and sometimes the pendulum swings one way. Like it did in your situation. My situation with Our dads. And I think maybe it swings the other way. We probably have overcompensated at some level for what we missed, you know, growing up ourselves.

Steve Harris: And I think we don’t really realize the depth of those things until we get older, when it’s almost too late to try. And like I would love to sit and have an adult conversation with my dad, but I wasn’t able to. Of course at that point in my life now is when I might be able to. But, those. He’s gone. He passed away. So, there’s a sad irony to that.

David Hirsch: Yeah. Well, there’s a lesson to be learned there. for those that are listening.

Steve Harris: Yes, yes.

David Hirsch: I’m curious to know what, if any, influence your grandfathers had.

Steve Harris: I spent a lot of time with my maternal grandfather. One was actually born in Utah. Our family moved early in my life to California. But we spent, we were very close to my grandparents, my mom’s parents in Utah. Every summer for 18 years of my life, every summer was spent, on the grandpa’s farm and my, grandmother. So they had a huge influence on our lives. Very stable, loving, involved, grandparents. My grandpa was, not a real, verbal guy. He was, you know, from the old country, Slovenia, that area, Serbs. He was an incredibly hard worker. These were people that work, in the coal mines all day and come home and run their farm. Incredibly hardworking people. People of faith that, you know, had us in Sunday school and church, on Sundays and youth group on Wednesday nights, made sure we made it to vacation Bible school, that kind of stuff. I’m very thankful for the spiritual, foundation that I discovered through my grandparents and the relationship that we enjoyed, for many years until they passed away. So I am very. Yeah, that’s a highlight of my life.

David Hirsch: Yeah. Well, thanks for sharing. Coincidentally,

00:10:00

David Hirsch: we both had very positive experiences with our maternal grandfathers, grandparents for that matter. And you know, it’s a blessing. Right. You don’t know it maybe at the time.

Steve Harris: Right.

David Hirsch: But you can look back and say, well, gosh, if it wasn’t for those individuals, the angels in our lives, where would we be today?

Steve Harris: Exactly. Exactly.

David Hirsch: So any other men that played an important role while you were a young guy or maybe as a young adult.

Steve Harris: Any other men I would point to, again, through my grandparents influence, we had gotten connected to a local church in Santa Clara. There were, I would say, four or five men that I could distinctly remember who took a interest in us, who became, role models, became I guess surrogate Fathers, in a way. I didn’t think of it like that at the time, but who spent time with with kids like me? We had a youth group. You know, we were taking beach trips and going to camps. And they just seem to care about young people. And looking back now, they probably saw me as a young kid who needed that. And I’m very thankful for the role models that I had. They were solid men, family oriented, fun people. I guess I had four or five of those kind of guys in my life, those men. I’m very thankful for them.

David Hirsch: Yeah. Well, thanks for sharing. My recollection was you went to Bethel College, now Bethel University. You have a master’s in theology and pastoral care. And I’m wondering, where does your career take you from there?

Steve Harris: Well, it gets, I think I say complicated. I’m not so sure it’s complicated. But after Bethel, I went to Bethel Seminary. My first pastorate was in Worcester, Massachusetts was an associate pastor at Belmont Street Baptist Church. Wonderful people. Pastored. Later, after a few years, became the. I’ll call the senior pastor of a smaller church in Sharon, Massachusetts. And that was some great people there too. But that in 19. Well 1980, Matthew was born. I had just started ministry, in Worcester. So I was only a year or so into that part of my career before Matthew was born. Matthew is hard to talk about, not hard to talk about. But the reality is that Matthew’s birth changed our lives. It changed everything about what I expected to be doing, what I was doing, what I was able to do, what I was not able to do, what I tried to do and probably shouldn’t have tried to do. Because Matthew, he was. He was physically disabled, mentally disabled, but he had great, medical needs from day one. And in fact lived in intensive care unit for the first year of his life and basically lived in a, hospital setting, even in our house for you know, his entire life until he moved into a medical group home. Anyway, all that to say that his birth and the challenges of taking care of him and of raising him really had an impact on my career. Had an impact on me personally, emotionally, spiritually. At the same moment that I’m trying to, you know, quote, build my career. I was being pulled in about six different directions. So I tried my best. I didn’t do well most of the time, much of the time, but I hung in there. We became, My wife Pam and I were in that church for five or six years. But then Decided we needed family, we needed more support. Matthew’s needs were pretty immense. And at that point. Then we moved back to Minnesota and became pastor of a church there. That’s when Andrew was born, 1988. Wonderful blessings there, but also some new challenges pretty quickly from there. Let’s see, after about three or four years of ministry there, I thought this, this is not possible. It is not possible to have a. The needs that we were facing in our home and try to be a pastor and a pastor’s wife. Which presents a whole other set of realities, and challenges. So I thought I would rather have a quote, normal 8 to 5, Monday through Friday job. Maybe we can pull this off. We moved back to California. I became a teacher and a school administrator. Those are some great years. Matthew’s health had kind of. His knees had lessened a bit. And we had some good years in California. But the new needs appeared and Pam, began to have some physical stuff showing up. We moved back to Minnesota to again be with family. So forgive me for rambling, but we. We moved back to Minnesota and I became a communications director at the YMCA

00:15:00

Steve Harris: in Minneapolis St. Paul and spent the last 20 years of my life doing that and doing what they called philanthropic communications. I had the opportunity, to write grants for the YMCA and to do communications for the YMCA. So that was the end of my formal career. I have been writing all the way through and continue to be a freelance writer today.

David Hirsch: Well, thank you for the flyby. So if I were to summarize, you were a pastor for about a decade in Massachusetts and Minnesota and you moved to California where you were a teacher and an administrator for a number of years and then you ended up back in the Twin Cities and working for YMCA for a couple decades, mostly in the communications area.

Steve Harris: Yes.

David Hirsch: And that you’ve been prolific in your writing behind the scenes the whole way.

Steve Harris: Right, right. That’s exactly right. I haven’t really taken that flyover view in a while. So, give me if it sound a little bit disjointed, but that is kind of how it went.

David Hirsch: Okay, well, thanks for the flyby.

Steve Harris: Okay.

David Hirsch: So, I’m sort of curious to know, how did you and Pam meet?

Steve Harris: Pam and I met at Bethel. We were in a writing class together. Started to work together on the school newspaper.

David Hirsch: Okay.

Steve Harris: Yeah.

David Hirsch: And I remember you had mentioned that you were together for 30 years and that very sadly she was diagnosed. I guess there were symptoms as early as 2000. That obviously put your journey in a different trajectory altogether. And I’m wondering if you can reflect on that a little bit.

Steve Harris: Sure. A little bit. Pam is wonderful person, incredible mom. She, started having symptoms in, 1998, 1999. Different things. Some cognitive stuff and some physical stuff. We ended up at Mayo Clinic. They diagnosed her with what they called Parkinsonism. They said it’s not classic Parkinson’s, but it looks kind of like Parkinson’s. She had some of the same symptoms and was receiving care and medication as a Parkinson’s patient. Dr. Martha Nance here in the. In the Twin Cities, an amazing, neurologist. There was a. There was a lot of decline though, in the. In the next five, six, seven years of her life. she eventually was diagnosed, differently. But, she had a lot of decline in her life. And so it was, it was a challenge because we still had two. Two boys at home, both with their needs, because I hadn’t mentioned yet. But, Andrew’s diagnosis changed. he has. He has cerebral palsy, kind of. But he really had something called Pelizaeus-Merzbacher disease, which is a very rare neurological disease that, is progressive and incurable. It’s a disease of the brain, whereby the myelin that is, normally, you know, insulating our brain against and making all the nerves work, that was missing and not working. And we found out later that really Matthew had the same diagnosis. It’s a disease that was, discovered about a century, maybe century and a half ago now that is present, in the mom, and it can be passed on to male children. So we kind of fit that. Once they started looking closer, we had some genetic testing that made that diagnosis and that’s what we were dealing with. So in a way, there are times when getting a diagnosis is actually helpful because at least you know what you’re dealing with. For many, many years with, both my boys and then later with Pam, we didn’t know really what was going on because nothing was. Matthew had spina bifida, but it wasn’t classic spina bifida. And Andrew had what they wanted to call cp, but it wasn’t classic cp. So not knowing and worrying and trying to figure out what to do was really difficult. Having a diagnosis, even though it was not a, diagnosis that had much good news in it because it was not going to get better. We were only going to be able to treat symptoms. It did give us Some handle on what we were dealing with. But Pam continued, to decline. 2012, she passed away.

David Hirsch: Yeah. Well, very sorry to hear about the, trajectory of her last 12 years of her life. That sounds like it was very debilitating. And like you said, you already had your hands full with these two boys, right? The two of you did. And, no doubt a little bit more of the responsibility is shifting over to your side of the equation, you know, if your wife has got some challenges of her own. And did I remember you mentioning to me in a prior conversation that you went through a financial divorce? I mean, you still live together.

Steve Harris: But we did, we did. In

00:20:00

Steve Harris: 2004 and five things were not going well. Pam was declining physically and mentally. And, we were trying to find out from the people who knew about these things how to best handle some of the. And it’s sad to say, but some of the financial aspects because she was needing care and we needed, programs and things, but she wasn’t going to qualify for certain things. And we found out that, there was, ah, I don’t know, I don’t want to use the word liability, but, you know, as we looked at our total financial picture, her needs were going to be overwhelming to us as well as with the boys. So, we did have a. I’ll call it a financial divorce, sad to say. I mean, that wasn’t the only factor. But we, went through all of that. We continued. she still lived in the house and we were together. But, until finally when, the needs were kind of overwhelming, everything. She went and lived with her mom. The family lived just a mile or two away. The last year or two of her life is where she spent with her mom. But, it was a very difficult, taxing, hard situation. It was, you know, I, I was not doing well. And I’ll be the first to say that, you know, I was no, no solid rock. I was, I was at rock bottom at many points. And looking back now, I guess I need to be somewhat. I won’t say kind to myself, but realize, the difficulty of the situation. But I, wish things had been different in so many different ways. I wish I had been different. I wish I had handled things differently. One of the things I talk about in the book I later wrote is I don’t see. I would never portray myself as an example to follow as a perfect dad, because I certainly was not, am not, will not be. But, trying to learn how to, survive these situations. I think, you know, God’s grace and some wonderful people have kind of helped me hang in there. So that’s all to say I am very thankful for the, for the mom that my boys had, for the wife I had. Pam is, the dedication she showed and the care that she gave. So we’re talking about the situation. Matthew, you know, from basically day one, was tube fed, which meant that we were making up liquid food, you know, every night, for what, 30. Well, until he moved into the group home. But, we basically had a intensive care unit in our home with Pam being the primary care nurse. I guess I never thought of it that way, but she was for, for decades, without any complaint. There were times when she was really, at the max of her resources. But, she gave it her all and always be thankful for that.

David Hirsch: Yeah. Well, thank you for your transparency. Even though it’s been quite a few years since then, I can tell just by the tone of your voice and your humility that these are some pretty challenging situations that nobody would ever be prepared for. And you just do what you can in those situations and you can only look back with the benefit of hindsight and understand how do we get to where we are and maybe reflect a little bit about coulda, woulda, shoulda. so thank you again for your authenticity.

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.

David Hirsch: So let’s talk about special needs. You know, you made reference to Matthew’s birth. He’s the older of your two sons. when he was born, he was diagnosed right there in the delivery room with spina bifida. And, I was wondering before his birth and that diagnosis if you or Pam had any connection directly or indirectly to the world of disability or special needs.

Steve Harris: No, thinking back, we had no direct family members, who had any disabilities or special needs. I, I knew of people at work, some friend at work whose daughter was disabled. but it was really distant. I didn’t think about that. I didn’t know anything about that. It was not a world that, I ever expected to touch. I did have a little neighbor girl down the street who, when I was, you know, six or seven years old myself, and she was deaf and had to

00:25:00

Steve Harris: to have hearing, aids. That touched me for some reason. I always felt sad for her that she had to have hearing aids and there was something, you know, wrong with her that I, I felt bad for that. But we didn’t have any kids in school other than her. I can’t think of any other kids who were disappointed, disabled or. So it wasn’t a world that we ever expected to be in.

David Hirsch: Yeah, well, thanks for sharing. I’m trying to roll the clock back to Matthew as a newborn. Matthew in his first couple years. I think you had indicated that he spent the better part of his first year literally in the hospital. And then you had a set up a hospital situation in your home. You’re a pastor for the first handful of the years that he was born. And I’m wondering what were some of the fears that you can reflect on, as parents of a child with those type of special needs.

Steve Harris: Our immediate fears were whether or not he was going to live. I go back to the delivery, room that day. Within a minute or two after the doctor said your baby has spina bifida, which I had never heard of before. It took me a week to figure out how to pronounce it. A nurse came up to me just you know, 10 seconds later and, and said, Mr. Harris, do you want me to get a priest? Well I thought what. Why would I need a priest? And then I realized what she was asking me was that you know, this baby, your baby is going to probably die here in the next couple minutes. So would you like me to get a priest? So we lived with the fear of Matthew’s dying, you know, basically I’ll say his whole life because what. One of the complications of his situation, was apnea, expel. So he would stop breathing. That happened, started happening within the first week of his life. It went on throughout his entire life. There were times when we’d have 15, 20 times a day where he would actually stop breathing and we’d have to give him CPR. The doctors told us that any one of those spells could be his last. So it, it was never, never became something we were used to. It was something that happened in, in stressful situations. It also happened in a grocery store aisle. It happened in the back pew of our church. It happened on, in a playground. You never knew what would what would? and the doctors couldn’t figure out exactly what was causing them, but he would just stop breathing anywhere from 30 seconds to a couple of minutes, turned blue. And we were giving him CPR and then he’d come out of it and then within five minutes he’s back to, back to kind of normal for him. You’re smiling and we were just, you know, trying to catch our breath. Anyway, all of that to say that, the pressures of that kind of a situation were tough to handle. But he handled it. He handled it pretty well. me sometimes not so much.

David Hirsch: Yeah, it sounds like a very demanding situation. Touch and go. I know in your book you talked about different types of stress. And if I remember, you talked about microwave stress versus crock pot stress. I think that’s how you phrased it.

Steve Harris: Well, yeah. What was it? Microwave. And what was the other one?

David Hirsch: Crock pot.

Steve Harris: Oh, crock pot. Right. The the breathing episodes, those were definitely microwave stress moments when all of a sudden you’re, you’re, you know, going to action, wondering what’s going to happen. The crockpot was more of the long term, you know, what’s going to happen here. And you asked me about fears and things and you know, it was a fear of Matthew’s passing. We, we didn’t know what was going to happen. I think the doctors never expected him to live as long as he did. I love this one quote from a doctor who said, this was years later, Dr. Wagner at Gillette in St. Paul. He said, you know, Matthew can’t do very many things. He can’t walk, he can’t talk, he can’t eat, he can barely move. But one thing that Matthew can do in an extraordinary way is stay alive. He had a will to live that was amazing. And he had a weight of hanging in there when nobody expected him to make it. I can’t, I can’t tell you how many times, Dave, that we didn’t think he was going to be with us much longer. He was, at one point he went into hospice care and that was a hard decision to do. But we, we thought he’s going so far downhill this is. So we’ve got to put him in hospice. So we put him in hospice to the point where one day they said, okay, we’re gonna, we advise you to stop feeding him. We advise you to stop giving him ah, liquid. We advise you to turn off the Matthew was always on an oxygen concentrator to help him Breathe. We advise you to turn off the oxygen machine and it’s time to, say goodbye and let Matthew go. It was very,

00:30:00

very difficult to get to that point. But I got to that point. I sat with him in those room, in his room there as they took the machines away and they stopped the feedings and all that. The hospice person said, Matthew has entered the, the dying phase, you know, and they’re walking me through all this as I’m sitting there watching him and crying and trying to deal with it. So the hospice person, I think their shift ended, so they had to leave. So I was still sitting there and got, through the night. And by the end of the night, basically, awake all night. Matthew is still alive, still breathing, now on his own. Next day, he’s still alive. He’s still with us. He’s still, He’s not conscious, but he’s still alive. So one nurse came to me at the end of that second day and she says, I think I saw Matthew’s eyelids flutter. I said, don’t tell me that. I don’t want to hear that. But then I watched close and they did flutter. And at one point he opened his eyes and I said, I want the feeding started again, I want the liquid started again. I want him back on the oxygen machine. Because if Matthew’s fighting to stay alive right now, at this moment, I’m going to fight with everything I have with him. Matthew lived another, three, four years after that moment. Oh my gosh, he had got, you know, there were some new things, different changes. He was no longer able to speak. But until we said goodbye, Matthew knew me and we communicated. We would mouth. I would get close to him and I would sing little songs and he would mouth the words to songs all the way up to the end. So he had an amazing will to live. And thank you for letting me just talk about it right now because, you know, I will never forget that, of all the. Yeah. Of all the things he couldn’t do, the things that he did was show a courage and a serenity and a peacefulness through all of that that I can’t even put into words.

David Hirsch: Yeah. Well, it’s very powerful story and thank you for giving attribution to Dr. Wagner at, Gillette hospital there in the Twin Cities, for bringing that to your attention. Matthew might not be able to do a lot of these things, but know he’s really good at staying alive. That’s what I heard you say.

Steve Harris: Right.

David Hirsch: So, was there Any meaningful advice? I’m not talking about the hospice advice. that seems like a distraction almost with the benefit of hindsight. But was there any advice that you might have gotten you and Pam got early on that helped put your journey in perspective, that maybe took some of the edge off this?

Steve Harris: All I can think right away of, some advice we got from a very special person to us. Pam’s grandfather or maternal grandfather, wonderful man who was actually the very first doctor of physical medicine in Minnesota. He worked in the 40s with, Sister Kenny. I don’t know if Sister Kenny rings a bell, but she the Australian, ah, nurse who devised, treatments for polio that revolutionized, the treatments of that disease in this country. And, anyway, Dr. Knapp was Matthews and Andrew’s great grandfather. Dr. Knapp talked to me about, people who are paralyzed and who are disabled. He said, the thing that you need to learn is to look not at what people can’t do, but what they can do. He said physical therapy, for example, is not going to cure paralyzed muscles. So what you do is you find the muscles that still work and make them the best they can be. That gave me kind of a wonderful way of looking at my voice and people who are disabled. I guess it comes down to real basic thing of looking at the positive, of trying to find the positives. I mean, it was a simple thing, but, I’ve never forgotten it.

David Hirsch: Yeah, well, thanks for sharing. and what a coincidence that that’s, a relative.

Steve Harris: Right, Right.

David Hirsch: It’s not just a, practitioner in leadership circles. You know, you need to play to your strengths. You don’t want to focus on things that you’re not good at. Allocate a disproportionate, amount of your resources to something that, you know you’re below average and that you might, if you work really hard at, you’ll become average at. You want to play to your strengths and find out what you’re good at and try to accelerate.

Steve Harris: Right.

David Hirsch: Get ahead, distinguish yourself based on what those are. So it seems second nature today, but maybe 20, 30 years ago, people didn’t have the same outlook on things as we have today. So Matthew lived in a group home for whatever number of years. And I’m wondering what the backstory was, the decision that led to, doing that versus having him, be with you.

Steve Harris: Yes, that’s a

00:35:00

Steve Harris: critical transition point for, dads like me and parents like me. You, you have it in your head that, well, we’re going to take care of our Child forever, because that’s what you want to do and are committed to do. Matthew, by the age of 18, was having, so many pneumonias and so many respiratory problems that he was ending up hospitalized. seemed like every two or three months he was in the hospital with serious pneumonias. Dr. Marker Children’s Hospital in Minneapolis said, the only way we’re going to, continue his. Matthew, to continue his life really is we’re going to have to give him a trach so that we can have more, you know, better access to, lung cares and all that, through a tracheotomy. So we said that was hard because it meant, you know, a number of things. But he, had a trach put in. And I think at that point we realized, because it also added, having a trach adds a lot of cares, different cares to a day. The suctioning, the. All the things that are needed there on top of the, meds and the, and the, food stuff and everything that we were needing to do. So we were advised to look into group home care, something we did not want to do. But, looking at the big picture, you know, all of this really is about caregiving. And I think there are points when you realize that even as the most trying to be the best dedicated caregiver you can be, it’s just too much. Somehow things go over a line. And, it went over a line for us and we started to look into group homes. And when Matthew’s, I think it was a little bit after his 18th birthday, entered his first group home. And I’ll never forget how hard that day was, you know, for parents to turn their child over to the care of strangers, people you don’t know. I remember walking into the group home. We were, meeting these people, and I said, okay. They showed me his room, and I said, now, where. Where in the room? Here. Can I put my sleeping bag? Because I pictured. I pictured myself, you know, coming there. Maybe not every night, but I would come and I, I expected I would roll out my sleeping bag and just be there. And they looked at me like, well, why would you do that? And I thought, well, we’re always with Matthew. Matthew’s always with us. Well, that, you know, I didn’t. Never did it, but, that was the feeling that, how do I, how do I do this? You know, we’ve been fighting for 18 years to, keep our precious little boy alive, and now we’re going to hand him off to somebody and we’re going to go home and do what, you know, watch tv. It just didn’t. But thankfully, and thankfully for the wonderful people, mostly wonderful people that work in group homes, Matthew went to live there. And, in fact, he lived in two or three, well, say different group home settings before he passed. But, yeah, that’s, that’s how that happened.

David Hirsch: Yeah. Well, thanks for sharing. It’s got to be really, tugs at your heartstrings to think that I don’t have what it takes to take care of my child, no matter what the circumstances are. Right. But at some point, you know, it is about getting the best care possible. And if you’re not able to do that, then, you know, you have to evaluate what the options are. And it sounds like, you know, despite the fact that they might have been strangers, not family members, you know, he lived for another 20 plus years.

Steve Harris: Right, you’re right. He lived. You’re right. And his health didn’t get better. I mean, they had some real challenges to face. But back to something that we talked about that I think dads are wise, wired to be protectors of our kids and to be the fixers of our kids. And dads like me, dads, kids with special needs, all of a sudden we, we hit walls where we realize we can’t do that, we can’t fix it. We can’t even always protect them from the sufferings and things they go through. And that is very, very frustrating and very hard to deal with. I, talk in the book about the flood of emotions that come, and one of them, I don’t know, I’ll, just say is anger you get. There’s a frustration and anger because I’m supposed to be the one to make this not happen. And so you see it happening and it’s out of your control. You don’t know where you fit. You don’t know how to. What if you’re not the fixer and the protector? Who are you? Exactly? So, that was certainly an experience that I had and a feeling that I had. But, back to the group homes for a minute. Group homes can be wonderful. And I, I, there are some great people working in it, and there are people that you meet along the way that are working there that they don’t see this as a job. They really see it as a calling to care for people like this in these situations and have these needs. There are a few, though, who do look at it as a job, and that is very noticeable.

00:40:00

And it’s very frustrating and it can be very, very hard to Deal with, you know, walking into a group home and seeing a number of staff there sitting around watching TV kind of thing, versus being in a group home where, you know that your child is being cared for. My son Andrew, today, he’s 37. He’s in a group home, you know, three hours away from where I live. I am trusting these folks to take care of him. And, at this point, it’s a. It’s a wonderful group home experience for him. But, my heart goes out to parents. Number one. Of coming to that point of having to say goodbye to your kid in a way, you know, moving him into another place and then kind of trusting the care of, folks is a very difficult situation. And I think it’s probably why you’ll meet people along the way. David, I’m sure you have met many almost elderly parents who still have their kids at home. My heart breaks for them for, you know, 20 different reasons. Because if I had my choice, both my boys would still be at home. You lose that choice. But you see some of these, and these are dear people and, you know, friends, and I say, you can’t do this. It’s just painful to watch. But what, How. Yeah, I understand how they get in those spots. So.

David Hirsch: Yeah, well, they don’t know any different. Right. They’re like, they can’t let go. Right. And there’s.

Steve Harris: Right.

David Hirsch: Sort of pluses and minuses. It’s not all good, it’s not all bad. And, you know, you wonder if it’s because of their own insecurity, you know, and they don’t know what they would do, like you were saying, if their child wasn’t with them, who could possibly take care of them any better than they could? Even if their health is declining, they’re getting older, they’re losing their strength. Right. It’s a tough situation, but, it’s, you know, every situation needs to be evaluated on its own merits.

Steve Harris: Right, right.

David Hirsch: You know, it’s. It’s a personal decision.

Steve Harris: Right.

David Hirsch: It’s not like, you know, there’s a book or a YouTube video that says, this is what you do in that situation. So, I have a lot of respect for parents like yourself who have had to confront these difficult situations and try to figure out, well, what’s best interest, of my child. Right. Because, you know, that. That seems to be, you know, you don’t want to lose your objectivity as far as that’s concerned.

Steve Harris: Right. There’s a chapter in my book I wrote called Letting Go. I wrote that chapter probably three, four years ago. Reread it a number of times. I’m not kidding. Every time I read it, I start crying. And I know the ending. I know how it goes. But there is nothing like that moment for a parent, to say goodbye to their child. So, and then ultimately, you know, to say goodbye if your child passes away. It’s, life changing, but it’s reality. And, it is reality.

David Hirsch: Yeah. Well, thank you for speaking the truth.

Tom Couch: And that concludes the first part of David Hirsch’s conversation with Steve Harris. Tune in next week when we’ll hear the conclusion to Steve’s story on the Special Fathers Network Dad to Dad Podcast.

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 Amgen. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing, and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

00:43:59