David Hirsch’s guest this week is Scott Newport, an advocate for those with disabilities and special needs. Scott and his x-wife are parents of three including Evan, who sadly passed away at age 7, after fighting Noonan syndrome. We’ll hear how Scott dealt with this tragic loss, his advocacy for families touched by special health care needs, his writings including being par t of the Chicken Soup For The Soul book, and how he has made unique use of his carpentry skills, on this Special Fathers Network Dad to Dad Podcast.
YouTube ‘All Around Me’ – https://www.youtube.com/watch?v=gtTScLpEAfY&t=16s
Noonan Syndrome: https://www.mayoclinic.org/diseases-conditions/noonan-syndrome/symptoms-causes/syc-20354422
Read about the Evan Newport Hope Award https://www.mottchildren.org/mott-patient-visitor-guide/employee-recognition.
CS Mott Children’s Hospital Ann Arbor – https://www.mottchildren.org/our-locations/cs-mott-childrens-hospital
Chicken Soup For The Soul: Children With Special Needs – https://www.chickensoup.com/book/34952/children-with-special-needs
Contact Scott at: ScottHNewport@gmail.com
Tom Couch: Special thanks to Horizon Therapeutics for sponsoring today’s 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.
Scott Newport: I told you my dad never had a dad. He never said, “Hey, someone, you have a kid. Just remember, when you have a child who’s terminal, here’s how you deal with that.” I mean, the pastor at the church didn’t even know how to do that. And so here I am stuck, and that’s why, David, I really hope these conversations can really blossom out there to new dads. Maybe even today there’s a new dad we don’t even know about, then in six or eight weeks, whenever this plays, he’ll hear this, and you and I can high five each other.
Tom Couch: That’s David Hirsch’s guest this week, Scott Newport, an advocate for those touched with disability and special needs. Scott has had three children, including Evan, who sadly passed away at age seven after fighting Noonan syndrome. We’ll hear how Scott dealt with this tragic loss and went on to help others, on this Special Fathers Network Dad to Dad Podcast. Say hello to David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support 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’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search Dad to Dad.
Tom Couch: And now let’s hear this heartfelt conversation between Scott Newport and David Hirsch.
David Hirsch: I’m thrilled to be talking to today with Scott Newport of Royal Oak, Michigan, who’s the father of three, a carpenter by trade, and an outspoken advocate for those touched by disability and special needs. Scott, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Scott Newport: Well, David, man, it’s really great to be here. I’m thinking back to the first time we met, and we were able to talk a little bit and find out the cool stuff you were doing, affecting dads all over the country—here in the United States and probably all over the world.
And so it’s a real honor to be with you today. Hopefully I’ll have a few great things tips to give dads, and maybe even learn more about myself as I recall some of the stories from my past.
David Hirsch: You and your former wife Penny are the proud parents of three children, Chelsea, 32, Noah, 22, and Evan, who sadly passed away in 2009 at age seven after battling Noonan syndrome, a rare genetic disorder.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Scott Newport: Holy smokes. Well, that’s going way back. I grew up in Ferndale, Michigan, which is near Eight Mile Road, which is an iconic road here in Michigan. And so I was a mile from Detroit, and like the kids today who play on their computers and do all the soccer stuff and the baseball stuff, we were street kids.
And even though it wasn’t a bad neighborhood, everything was about the neighborhood, the pickup softball games or baseball games against the next street over. You know, all ages hung out together. Might be a seven-year-old and a 13-year-old and maybe even an 18-year-old. But it was really great. But a lot of it was just the neighborhood.
People say, “Well, what kind of toys did you have when you were growing up?” I don’t know. It was all about the neighborhood. You know, we played baseball in the street. We went up to the park. We lived near the Detroit Zoo, so in the summertime, that was our fun. It was free back then. We would go up there maybe for a week at a time, and of course the security people would say, “Oh no, here come the townies.” So that was part of my growing up.
David Hirsch: Excellent. From what I remember, you were the middle child. You had an older brother and a younger sister, and I’m wondering if you still keep in contact with them.
Scott Newport: Yep. Even though we’ve still got that old sibling rivalry, my brother and I do keep in contact. He’s out of the state right now. He was kind of in the building business like I am, but he was in sales. And my sister is about two and a half hours away in Grand Rapids, Michigan. And occasionally I’ll go over there, or quite often really, because they’re by the lake And we do connect quite a bit.
David Hirsch: Excellent. So I’m sort of curious to know, what did your dad do for a living?
Scott Newport: Well, heck, my dad was a carpenter too, but he was more of a builder than I was. I’m more of a carpenter, not a builder. So I learned a lot more of the technical stuff. He was more getting jobs. Again, he grew up in the city, I guess lower middle income, maybe you could say.
But it wasn’t like it is today, where the dads go to every soccer game, every this and that. My dad had to work. So even though some of the other kids would join Cub Scouts and some of the other things, we never did that. I guess we didn’t have the money. I don’t even remember now, but didn’t even affect me, because I didn’t know any different.
But when it came to snowmobiling, that type of thing, he would always take us, me and my brother. When I was in high school, I played a lot of sports, and I don’t think my mom and dad ever missed a game.
David Hirsch: Okay. So it sounds like he had a good work ethic and he was present. And I’m wondering, how would you describe your relationship with your dad?
Scott Newport: So I would describe my relationship with my dad as close, but much closer as he got older. Because as he got older and retired, I started to take him to work with me just about every day that he was here in this area with me. So it was a great relationship.
He was a great storyteller. He never really said, “I love you,” but he always showed that he loved me. Like if I told him I was going to come pick him up, he was like, “Man, yeah, come get me.” And in fact, the day he died, I took him to the doctor’s office. He was kind of half in, half out, and been struggling. He had just come back from Florida, and my mom didn’t want to take him.
So I took my dad to the doctor’s office that day, and as we got out of my work van, I said, “Hey dad, just so you know, there’s no work today.” And he looked over to me, and he says, “You’re kidding. We’re not going to work?” And he laughed. He died like 20 hours after that.
So that gave me a lot of peace, to know that my dad could even be almost comatose, in and out, but we were able to joke. That’s kind of the relationship that we had. It was my dad, but it was kind of that good old boy thing, you know. He was from Paducah, Kentucky, kind of the southern way. And so yeah, that’s a great memory.
David Hirsch: Yeah. Well, thanks for sharing. And I know men in our dads’ generation didn’t verbalize themselves as much as maybe dads do, or men are expected to, today. But it sounds like he showed you, maybe by his example, that he cared for you, that he loved you, even though you might not have heard those words. That’s what I heard you say.
Is there an important lesson, something you’ve tried to incorporate into your own fathering, that you took away from your dad?
Scott Newport: Great question, David. Now you’re getting me reminiscing about all these memories. I remember the first time I got a car, or I wanted a car, I said, “Hey dad, can I get this car? It’s $600.” And he goes, “Sure.” And I said, “I need half the money. If I come up with half, will you come up with half?” He agreed to that, so it was great.
Well, first thing I did, I got the car and it needed brakes, right? It was a cheap car. And I told my dad, and he says, “Your brakes are bad, dude.” And again he said, “I’ll help you do the right side, but the left side of the car is on your own.” And I’ve done that with my son Noah, like changing tires. “Okay, I’ll help you change one, but I’m not going to change it and bail you out every time.”
So he never taught me this thing, but I have kind of a motto that I had when my other son, Evan, was born: fortitudine vincimus. And it means “By endurance we conquer.” And I think with my dad, he’s like, “Yeah, we weren’t really, really great at anything, but we got through everything together.”
David Hirsch: I love it. And I think that splitting the cost of things with your kids as they’re growing up and helping them understand that in the real world there’s costs to doing things, can make it a little bit easier.
And I think when people have skin in the game—and that’s what I heard you saying—if you’ve got an expense, instead of expecting your parents to do things for you, you’re going to have to understand that there’s a cost to life. I think it’s a great way to help our youth transition from being young and maybe inexperienced to the real world. At least that’s the way I think about it.
Scott Newport: Absolutely. I can remember another time when I was underneath that same car that I paid $600 for that he paid $300. Like you said, I had a stake in it. And the exhaust went bad, so I was underneath that car. It was old Mercury Capri, I think. And I was using pop cans to fix the exhaust.
He must have come out and looked underneath there. And he probably walked back in the house. I didn’t know. I was putting those pop cans on there, and we used to have that old exhaust tape, kind of a metal tape. And he finally came out and said, “Here’s 120 bucks. Why don’t you go down by a whole new exhaust system? I can’t watch this anymore.” It’s all great memories, right?
David Hirsch: So, you’ve been in the construction remodeling business, and from what I remember, you’ve also taken up building furniture. I’m wondering, how did that transpire?
Scott Newport: Well, that’s a great question. So yes, I am a carpenter, right? But my dad never built furniture. When my son Evan was born, and he had been in the intensive care unit for about three months, I noticed all these other doctors, a lot of them men, were helping our family. And I thought, “Oh my gosh.” I was so thankful that they would help the carpenter dude who didn’t have a lot of money.
They would come beside me and my family to keep my son Evan alive. And I said, “Man, I have to thank them.” So one day I went home after the hospital, I thought I’d make them something. I didn’t have any really good wood around, so I thought, “Well, what could everyone use? Well, everyone can use a stool, so I’ll make the one doctor a stool.”
I just finished building a staircase, and there was one tread in the staircase that had a knot in it, and I thought customer would never accept it. So it was kind of a damaged piece of junk, right? So I took that step, and I cut the top out of it, and I found some other scrap pieces I actually had in my garbage can.
I pulled those out, and I was able to make four legs and a top. And I go, “Oh, this is pretty cool. He’ll never know that it was out of the garbage.” So I took it to the hospital. About a week later, I had it all finished, and I said, “Hey, Doctor Bob, or whoever it was, can we talk? I made you something.”
And as I was presenting it to him, I started to think about my son Evan, right? He had a heart defect. He had Noonan syndrome. Kind of like a throwaway, right? Nobody wants a kid like that. And I started to cry, and he started to cry. And that’s where it all started, where I started finding the beauty in the brokenness, right? And especially our kids with special healthcare needs and disabilities.
And I ended up making one for all of the attending doctors, which was about seven there at Beaumont Hospital here in Royal Oak, Michigan. And even the President of the United States has one of my pieces made for him. So it’s really become one of my missions and ministries of life, and it actually has made me a better carpenter too.
David Hirsch: I love that story. Thank you for sharing. And I don’t want to step on a landmine, but you’ve been married and divorced for about eight years now, and I know that you have an older daughter from a previous relationship, and then you had the two boys with Penny. And I’m wondering if the challenges of raising a child with special needs had an impact on your relationship, or if it was beyond that?
Scott Newport: Yeah, David, that’s not a landmine. I mean, we all we’re men. We go through these things every day, and I do appreciate you being sincere and kind of considerate with me about that subject. But it did affect our marriage, the stress that it had when Evan was alive.
And even before Evan was alive, you know, all the ultrasounds and those things, getting worse and worse news, and finally Evan being born. And about an hour before Evan was delivered, they told us, “By the way, there is a 50-50 chance Evan will survive.” So immediately there’s just big stress on the family. And we spent almost a year in the hospital with Evan, not sure if he was making it.
And she would talk to her friends about these things. And as a dad, I was terrified, because I was the protector, right? I’m the man, I’m supposed to fix things, and I couldn’t fix this. And I remember the first time they had asked us to step out of the room because Evan was doing so poorly, it must have been a month or two, and I thought he was going to die. They said, Hey, you have to step out of the room.
And I went out, and I started freaking out. My wife was freaking out. We had friends there, but I walked to the staff bathroom as we were waiting to go back in the room, and I allowed myself to cry. I didn’t tell my wife, but that was part of my coping mechanism.
But during that whole time, there was just so much stress on our family, because once we were able to come home, we had full-time nursing. So we had a nurse in our house 24/7, and we weren’t sure how long Evan would live. So every night I would go to bed wondering if that would be the night.
I felt so much anguish because I had to go to work every day. My wife stayed at home. I can still remember coming home one day when the teacher was coming over to the house. I kicked off of work, and I ran back to the house. And she says, “What are you doing here? I go, “I want to see Evan with the teacher. She goes, “But you have to be making money, dude.” And I’m going, “But my kid may not be here tomorrow. If he’s going to do something, like pick up a block or say something, I want to be there.”
And so that brought a lot of strain on our family, the finances. And people would say, “Yeah, but you had insurance, Scott.” And I said, “Yeah, but I missed a lot of days of work.” Every time he got admitted, I didn’t go to work those days because I thought he might die. It wasn’t worth it to me. And so that financial stress, and then people living in your house all the time.
And then when Evan did eventually die, it just was never the same. I grieved so horribly. I didn’t know how to react. I learned what depression was, and I was able to recognize that. So over the years when I had it, at least I knew what that was. But my wife didn’t really understand that, and I didn’t really. I should have talked, I should have forced conversation, but I didn’t.
And I’ll never forget the time she said, “Hey, the furniture thing we talked about”—and I also do a lot of writing too that helps me to cope—she goes, “I hope someday you find someone who likes your writing and your furniture.” And that really crushed me.
And I don’t think she really even disliked that, but I think she saw that I found joy in that. And maybe I didn’t find joy with her in that. As we all know, relationships are complicated. Now you’re throwing a kid who’s got a terminal illness, and you have another son, Noah, for whom we’re trying to keep life normal when it wasn’t normal, and there’s a lot of stress. And I think now I’ve learned how to communicate a lot better. I wish I would’ve known those things.
I told you my dad never had a dad. He never said, “Hey, someone, you have a kid. Just remember, when you have a child who’s terminal, here’s how you deal with that.” I mean, the pastor at the church didn’t even know how to do that. And so here I am stuck, and that’s why, David, I really hope these conversations can really blossom out there to new dads. Maybe even today there’s a new dad we don’t even know about, then in six or eight weeks, whenever this plays, he’ll hear this, and you and I can high five each other.
David Hirsch: Yeah. Well, thank you for being so authentic and open about the circumstances. One of the things I heard you say, Scott, was that your way of grieving was different from Penny’s way of grieving, and you found some solace in the furniture building and your writing.
And I think what I’ve witnessed in other situations is that men and women, fathers and mothers, don’t grieve at the same pace and in the same way. And what we need to do is provide each other with some grace and space to go through that grieving process, and just acknowledge that it’s not meant to be that we have to go through the same situation at the same pace. Maybe that’s one of the pieces of wisdom that you’ve taken away from your own situation as well.
Scott Newport: Yeah, that was a great piece of wisdom. Because as we talked about before, and I tell you, I mentor families at the hospital with children with terminal illnesses. One of the first things I’ll say, as a dad, “Just so you know, men and women grieve differently.” And for a lot of them, that’s a surprise. But it’s just saying that to give them that understanding, and for them to accept that that’s okay, that goes a long ways.
David Hirsch: So I’m sort of curious to know, how did Evan’s diagnosis come about, and what was your first reaction and understanding of that?
Scott Newport: Well, his official diagnosis came at about six months for the Noonan syndrome. And of course I told the doctor he was probably wrong. So I guess I was unaccepting of that, even though I knew Evan was a really sick kid.
When Evan was first born, I thought, “Oh, well maybe we’ll be out of here in a few months, and he’ll be normal.” And then after about three months I go, “Well, maybe he will have a little disability, and we’ll be out of here in six months.” And at some point I had to come to the realization that Evan may never get out of here, and he will not live a long life. And so once I accepted that, that made it a lot easier.
Now that took one doctor in particular who came up to me, and he happened to be a dad too, which I didn’t know at the time, and he came up to me in the intensive care unit. He was the director of the pediatric intensive care unit at C.S. Mott Children’s Hospital at the University of Michigan.
And he stood next to me one evening, and he says, “Hey Scott, I’m no different than you.” And what I thought he meant was he liked to hunt and fish like I did, right? He liked Diet Coke. “Hey, I’m no different than you.” I found out about three years later that he had had a son die too. And so there’s another guy, almost like a father figure too, we’re talking about dads and grandfathers who came to my side and were able to tell me that in a very kind way.
So when I did get the diagnosis, and I had guys like Dr. Joe Custer by my side, it made it easier to at least have expectations that that would happen at some point, and that I wouldn’t be alone in that journey.
David Hirsch: Yeah. Well I think of the stories like the one you just related about the doctor coming alongside you and not maybe explaining what he meant. You know, I’m like you. It is really important. It’s like there’s an angel in your presence, right? You don’t know it at the time, but you can look back on it and, you know, it’s a very profound experience. And we’re very fortunate to have people like that show up in our lives.
I’m wondering if there were some important decisions that you and Penny made early on during Evan’s battle, that you can look back and say, you know, those are the things we got right, or we wouldn’t have changed anything based on everything you know now.
Scott Newport: Wooh. Brings a little emotion to me right now, because I’m thinking one of the first big decisions we had to make was to have Evan identified as a DNR. For those of you who don’t know what a DNR is, that’s a “Do not resuscitate” order. What that means is to not do any big interventions on Evan, and maybe if he was really sick, it would be time to let him just go.
So we came up with we would start IV antibiotics, but we wouldn’t do any surgeries with him. And I think that was a great decision. And even though it was very, very, very difficult at the time, it saved Evan from a lot of suffering that could have come about.
I remember the day after we signed that DNR, I wrote the letters DNR vertically on the window to Evan’s room in the pediatric intensive care unit. And it was like one of the acrostic things, and it said, “Do not retreat.” And one of the attending doctors came up to me, because I would play yo-yos at night. I was getting other parents to do projects up there on the floor. We would call hospital stationary, which I put the DRN on, which was a paper towel, and “Do not retreat.”
And she goes, “Scott, you know a DNR is a serious thing.” And I really love this attending doctor. And I go, “Yeah, but is it okay if we just keep a little bit of hope?” And she nodded and says, “Yeah.” So I still tell that story. Evan was a DNR, but it doesn’t always mean “Do not resuscitate.” Sometimes it means “Do not retreat.”
David Hirsch: Yeah. Well, thank you for sharing. It is a pretty heavy topic though. Most people don’t cross that bridge until you’re typically dealing with a elderly parent, and you know you’re the one that has the healthcare power of attorney, and that’s a heavy responsibility.
So I don’t know what it’s like being in those shoes, having to contemplate that as a parent, but it is a heavy topic. And the fact that you could shed a little light or some levity into the situation, I think maybe takes the edge off of it all. That’s what I heard you say.
So I’m sort of curious to know what impact Evan’s situation has had on his older siblings, on Noah, or Chelsea for that matter.
Scott Newport: That’s another great question. After we had talked the other day, I called Noah, and I said, “Hey, I was talking to David, this new guy I met, and we were going to do some cool stuff together.” And I said, “You know, as a sibling, can you say something about it?” Usually he doesn’t really talk to me about those things, but I’ll hear from the school teachers or other members of our community that he seems to be more comfortable to tell them about Evan’s story.
And I don’t know if he may not want to talk to me because it’ll bring up such deep emotion that he will be crying, or he doesn’t want to see me cry. But he did say this. “Dad, when Evan was here….” Evan was on a ventilator. He was on a feeding pump. He had a G-tube. He never ate by mouth. He looked funny. He was short. Evan was a lot of fun. He said, “But dad, it was normal to me, to have nurses living with me, and their grandkids and the whole house and the alarms going on. That was normal to me.” He said, “After Evan died, that was abnormal for me.”
And it really struck me. I’m like, oh my gosh. It was just the complete opposite. But he grew up doing that, and really it’s almost a cool thing, because it almost teaches him that things don’t always go right. You know, divorce. Car breakdown. Lose a job. That is normal. And as I told you before, he’s in a medical program or at least a pre-med. I’m not sure if he’s going to go into nursing or be a PA or medicine, but that’s affected his life greatly.
And he is always been, even as a young kid, very empathetic with other children. And so, playing football, I mean, he would just be taking hits. The coaches loved him. He was a middle linebacker, and he just like didn’t care. I called my social worker one day—Linda, my palliative care social worker—and I go, “Oh, my gosh. Noah’s acting like he’s hurting people.” And she said to me, “Scott, that’s the way he’s getting it out. And that’s a good thing.” So I thought that was cool. I was proud of him too, by the way.
David Hirsch: Yeah. Well, thanks for sharing. It affects everybody differently. And I think we’re inclined to think about the positive things. Especially looking back, you want to have good memories, but it’s challenging, right? And you’ve had the difficult challenge in your life of having to bury Evan. And then there’s the life during Evan’s life and then, you know, post Evan. And it sounds like you and Noah both have had a chance to reflect on that.
I’m wondering if it’s had much of an impact on Chelsea’s life as well.
Scott Newport: Yeah. Chelsea, you know, was older and living on her own during that time period. But she’d always come over and help, and if I wrote a story and she wasn’t in it, boy, watch out. She’s like that. She’s still daddy’s little girl, right? She wants to be all part of that.
And so for her, she was in the medical field too, and not because of Evan, but that’s what she chose. She was more of a helper because she was older and supportive. “Hey, do you want me to watch Evan for a minute so you can run up to the store, and help suction him?”
So it was definitely different, because Noah was only four years old when Evan was born and he grew up with that, not knowing anything different. Chelsea was older and married and had her family. So it was a little different dynamic. But even to this day, she’s posting a lot of pictures with her and Evan, the proud sister.
David Hirsch: That’s fabulous. Thank you for sharing. I’m sort of curious to know, were there any organizations that your family relied on or that Evan benefited from during his short life?
Scott Newport: Well, absolutely. We had a lot of people come around our side. I think one of the most interesting ones was the day we finally got discharged after almost a year at the University of Michigan, bringing Evan home to die here at the house, not knowing how long he would live. We had two nurses come with us. We had all our new equipment here.
And I think it was the next day I said, “Well, if something happens, we don’t have the ICU doctors here. We’re going to have to call 911. And I don’t know if that’s going to be a good thing, because 911 doesn’t always know a lot about pediatrics.”
So I actually drove up to our local fire station. I went inside and said, “Hey, I’m Scott and I got a kid who may die soon. Do you think you’d want to do like an in-service on our family? Because we may call you.” They say, “Yeah, we’ll send two firefighters over tomorrow and meet with you.” So they came over. Well, that relationship lasted the whole life of Evan, and at Evan’s funeral, the pallbearers were the firefighters.
David Hirsch: Oh, wow.
Scott Newport: And the fire truck led the possession to the cemetery. Well, after a couple months with them, they said, “The firefighters are going to do a spaghetti fundraiser for Evan.” And we’re like, “Oh, okay. That’s cool.” And they do know how to make spaghetti. I’m not sure if they knew how to do a fundraiser, but they raised $17,000 for us, which was awesome.
Another time I came home to see Noah. I got off work, and I asked Penny, “Hey, where’s Noah?” She said, “He’s up at the school. He’ll be home in a minute,” and she was kinda laughing. I go, “What do you mean?” And as I’m looking outside, here comes the big ladder truck the firefighters have, and Noah’s in the back seat. They actually picked Noah up after school and brought him home. So our local firefighters were really helpful.
Of course we had Make-A-Wish too. They helped us. My wife Penny wrote the President one day. The President wrote back, or calls, and said, “Hey, your wife wrote us a letter, and you guys are invited to come to the White House.” And so Make-A-Wish helped us to be able to go to the White House and meet the President of the United States and have a personal conversation with him, which was totally crazy.
And I asked my wife—I mean, I write and I edit, and all this—I go, “What did you say in that letter to him, so the staffer from the White House would call us?” Because I didn’t even believe it at first. She goes, “I don’t remember. I threw it out.”
David Hirsch: I just want timestamp that, because I saw the photo that you’d shared. And the president of the United States that we’re talking about is George W. Bush.
Scott Newport: Yes.
David Hirsch: Which is a crazy way to meet the President of the United States. But you know, it’s just a reminder that he’s a human being. He’s rock solid as far as his family values are concerned. Thanks for sharing that, and it’s great that Make-A-Wish played a role in that as well. Were there any other organizations that played an important role?
Scott Newport: Yeah, there actually was one that really helped us out a lot, and it wasn’t a nonprofit. It was Children’s Special Healthcare of Michigan. It’s a secondary insurance for families, so if your main provider doesn’t pick it up, they pick up the rest. It’s only for certain diagnoses, and Evan was able to get that. Thanks to Matt Richardson and Children’s Special Healthcare. It’s just awesome.
And even today, Matt still calls me and say, “Hey, we have a dad who’s really suffering, and we want to know if it would be okay if we give him your number.” It’s so beautiful, and it’s just a legacy of Evan and children like him, that I had to go through all that suffering and pain, and now if I hadn’t, I couldn’t help these families, right?
Because anytime I talk to a dad, they never say, “You don’t get it.” I don’t even tell my story—it’s just the way I talk and understand them. But it all starts with these other organizations, like Children’s Special Healthcare, which is actually a state agency. You wouldn’t think they would do a great job. But there are people out there—you just have to search them out and build contacts and allies. It makes it easy for all of us.
David Hirsch: Yeah. Well, thanks for sharing. Very impactful. I know that one of the things we talked about earlier was your writing. I’m wondering how that came about, and I’m wondering if you might be able to share one or two of the stories. I know that you shared a number with me, and one of the ones that stuck was going through the grits.
Scott Newport: Yeah. So I started writing. I never wrote in my life. I can hardly read, and I was under so much stress. But I wanted to get my voice out there when I was in the intensive care unit, like the first month or so. I heard a sermon one day, and it said everything rises and falls on leadership. And I thought, ah, some of these attending doctors are better than other ones.
And so I took a little three by five card, and I wrote, “Everything rises and falls on leadership,” and I stuck it on Evan’s crib. Well, sure enough, it didn’t take five minutes. One nurse would to walk by. “What’s that supposed to mean?” Well, another nurse would walk by. “That means something doesn’t it? And I thought, oh, I made an impact.
And then I started writing stories. I wrote a story about why everything rises and falls on leadership, and I started putting them on my Noonan support group page. The funny thing now that I look back at them, it was a full page, but there were no paragraphs. It was just one big paragraph.
Well, one day after many women wrote me and said, “Dude, you got great stories, but you don’t know how to write,” I met a woman, Mare Haynes, who was an editor down in South Carolina. She had a son with disabilities. She said, “Dude, I can help you.” And so even to this day, she edits for me.
So she taught me how to write, and it was just, “Don’t tell me ‘Noah’s down the basement yelling.’ Let Noah do it.” So she said, “Use quotes. ‘Hey dad, I’m down the basement. Could you come down here?’” And I thought, “Oh, when I used the quotation marks, I could actually hear Noah down the basement—and other people could hear that too.”
So she started teaching me how to write, and I started going into writing conferences. And one day I told Mare, “Hey, there’s a contest on the “Chicken Soup for the Souls” looking for stuff. She just said, “Well, use that one story you wrote, and maybe we can get it in.” Well, I sent them seven stories and actually had five of them accepted. Two of those were in one of their books. I’ve written for them five times since.
And one of my favorite stories is this. Not only do I do the carpentry and the furniture building, I also started making knives and creative stuff like that. And one day I said, “Noah, we’re both going to make a knife today.” So we went out to my shop and we made knives and made the leather sheaths, and it was cool. And I thought, well, I could probably get better at this. And so I did.
And one day, another coworker of mine came up to me, and he was a hunting guy too. And he says, “Hey, I know you made that knife for me. Would you fix my buddy’s hunting knife, because I want to give it to him for Christmas.” So I looked at the knife, and I took it out to my shop that evening.
And as I was going out to my shop, one of the dads I mentor—which I told you, I mentor families with kids with terminal illnesses, and he was from Zeeland, Michigan—he called me and said they were in crisis. Their son was back in the hospital. They weren’t sure if he was going to make it. And I said, “Okay, why don’t you call me back in a little bit, and we’ll talk some more, see where things are going.”
So I went out there, and I started working on the knife, and I was starting with real heavy grits. He had bad scratches on that thing. I don’t know who tried to sharpen it before. So I was at 40 grit, then 60, then 80, 120. And I kept doing it. And as I’m doing it, I’m thinking about that guy’s knife and how special it might be, and maybe he got that for a Christmas gift years ago from his dad. I don’t know.
I’m thinking about this thing, but I was also thinking about the dad I was working with and thinking like, you know, he’s going to call me at three in the morning. I’ve been working with him a long time, and I knew his kid was getting sicker and sicker. I started thinking, “What would I say to him?”
And so I had one of those jeweler’s lenses, and I had a light on my head, and I’m looking under the microscope. And I’m going, “Man, I can’t get all these scratches out.” And in an instant, it was like God said to me, “You know, Scott, maybe you should tell Ryan that we can’t get all the scratches out. Maybe like the scratch my son had hitting him, the heart disease, and his son who had a brain deficiency—maybe we can’t get the all the scratches out.”
And I thought about that a little more, and I polished the knife and polished and I finally said, “You know what? This knife looks pretty good actually.” But I couldn’t get those two big scratches out. And it reminded me more about Evan and reminded me about Ryan.
And so the next day I told him that story. I said, “Dude, you know I’m doing this knife, and I don’t know if it means anything to you, but maybe we just can’t get all the scratches out. But that knife’s pretty cool. And you know what? Your son is pretty cool, and gosh dang it, my son’s pretty cool too.”
So we ended up writing that story, and I actually had that published in a pretty big medical journal called Voices From the Heart of Medicine. And that was probably one of my biggest accomplishments, because that was out of a big college and a big medical university.
David Hirsch: Yeah. Well, thanks for sharing. What I love about your stories, your storytelling, is that you take some everyday experiences that you’ve had and you compare them, or you draw a comparison and an analogy with life.
And one of the things that has been forefront in your mind is this experience you and your family have had with Evan. And realizing that it’s not right or not perfect, and coming to the realization that it’s okay, that that’s just the way things are. And being accepting of that, as opposed to discarding something because it’s not as you would’ve hoped it to be. There’s a lot of enlightenment there.
So I just want to say thanks for doing the writing that you’ve done, which you you admitted earlier was therapeutic for you. But the fact that it can benefit so many others, and can shed a light on a difficult issue or topic, is really profound.
I am thinking about advice now, and I’m wondering if there is any advice you’d want to share with a dad who maybe has recently learned he has a child with a difference or a special need?
Scott Newport: Well, David, you’re hitting the jackpot now, dude. I mean, I’ll tell one story—and this is advice I give to a lot of families. I was in the hospital again, and I was starting to write. I had to come to work one day, and on the way home I heard something. I don’t if it was a sermon, or a Christian song, and I pulled over on the side of the road. I learned that if you’re a writer, if you think about it, you have to write it down.
All I had was a McDonald’s paper bag that I ripped open, and I wrote this thing down. I had three points to it. “Warriors know how to take on affliction. Warriors may get knocked down, but they always get back up.” And the third one, which is most important, is, “Warriors know the greater the battle, the greater the reward.”
So I would give that thing to families as advice. You’re a warrior, you have to learn about your child’s condition. You need to know that you’re going to get knocked down a few times while you’re up here. And you know the greater the battle, the greater the reward. And so if you’re a spiritual guy, you can kind of think where like Christ came down, too.
So one day I was going to give that advice to a doctor who had gotten hurt and was in the ICU. He had helped our families, but now he was out of it. So I went and told his wife, “Here’s my advice. Here’s my little thing. Warriors know how to take on affliction, warriors may get knocked down, and warriors know the greater the battle, the greater the reward.”
I walked out of that room five minutes later, went down the hall, and I heard someone running behind me. And I looked around and it was the nurse. She said, “Hey dude, I really love that. I mean, can I use that?” I’m going, “Yeah, of course. Like I’m great, right? I came up with these three things.” She goes, “Yeah, but you forgot the last one.” I go, “No, there’s three.” She goes, “No, you forgot the last one.”
I wasn’t made, but I was a little frustrated. “Okay, nurse, what was it?” She goes, “Warriors never going to battle alone.” Oh, God, what a miracle. That’s one of the advices I give a lot of families.
And she was right. We can’t do this alone. We need other dads around us. We need our families, our wives, the pastors at the church, Children’s Special Healthcare. We need our social workers, we need the teachers. I can’t do this alone. I couldn’t even teach my kid how to ride a bike. The OTPT people had to do that. But it was cool to see
David Hirsch: Well, thank you for sharing. Very profound. And I think it dovetails into the whole existence of why the Special Fathers Network is here, right? So dads don’t have to do it themselves. They can align themselves with somebody who’s been there and done that.
Which leads me to asking, why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Scott Newport: Well, it’s like I was working with a dad last year, and the first thing he told me was he was a Ranger, and did I know what that meant? And I go, “Yeah, you’re probably a pretty tough guy.” He was a tough guy. And we really became close. We probably met, I don’t know if it was six months, before his daughter did end up dying up there.
But one day I came in, and he looked at me, and he says, “How do you do this, man?” And I kind of knew what he was doing, because I knew two kids had died on the unit the night before. And he was there, you know, and when you’re in an ICU, when other kids die or come in with a life flight helicopter, you know what’s going on. Because everyone’s rushing.
And he goes, “Two kids just died.” He goes, “Why do you come here and do this? Why do you do this, man?” And he caught me off guard, because I never really thought about it. But I said, “Chase, I come up here every day to see you, or when I do, it’s because I don’t want you to be alone. Because when I was here eight years ago, I was alone. There was no one for me.”
So with the Network now, I want to be a mentor because I don’t want any of these other guys to be alone, because it’s depressing. There’s no hope. But when you have another guy come alongside you, just like Dr. Joe Custer came up to me and says, “I’m no different than you,” it’s me mentoring a dad in the Network and standing next to him one day and going, “Hey dude, I’m no different than you.”
David Hirsch: Yeah. I love it. Good stuff. Thank you for sharing. Thank you for being part of the Network. We’re thrilled to have you. Let’s give a special shout out to our mutual friend, Lisa Huckleberry at the Michigan Family Center for Children and Youth with Special Healthcare Needs for helping connect us.
Scott Newport: Way to go, Lisa!
David Hirsch: Is there anything else you’d like to say before we wrap up?
Scott Newport: Well, I know it’s tough for everybody. It’s not easy. It will never be easy, but there are guys like me out there, but you have to look for them. Like if you think back to what I said, you can think all you want at night about how bad it is. But you need to start noticing the people around you.
Remember I said sometimes noticing is more important thinking, and I think that’s probably a pretty good thing to end with, because I’m still working on that. And learning to listen to your spouse, knowing that you guys don’t have to think the same strategy, to understand those differences. Try to become more reasonable. Try to build partnerships with either your wife, your pastor, or your buddy down the street.
Be reasonable. But always be willing to ask the wondering question. “Hey, hon, I’m just wondering if we could do something different today.” Or ask the doctors with your, or caregivers, “ I’m just wondering if we can do something different.” Build partnerships. Be reasonable, because we’re in a big community, right? We can’t always have our way, buddy. And be open to ask the wondering question.
David Hirsch: Yep. Thank you for sharing. If somebody wants to learn more about the articles you’ve written or to contact you, what’s the best way to do that?
Scott Newport: I dunno. I guess you could google my name. I don’t have a website or anything. I just put it out there. You could probably search around a little bit, put in my name or Evan’s name, University of Michigan, C.S. Mott Children’s Hospital. You can see the Big Hope Award at C.S. Mott Children’s Hospital that’s named after my son, the Evan Newport Hope Award. So any of those avenues, you might find some of the stuff I’ve written.
David Hirsch: How about if we include your email, so if somebody wanted to follow up with you, they could do that?
Scott Newport: I’d love to hear from any of you dads out there. I love doing it. So it’s email@example.com. And I would love to hear from you.
David Hirsch: Excellent. We’ll be sure to include that in the show notes. Scott, thank you for taking the time and many insights. 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 501(c)3 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.
Scott, thanks again.
Scott Newport: Thank you, David.
Tom Couch: And thank you for listening to the Dad to Dad Podcast presented by the Special Fathers Network. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. Go to 21stcenturydads.org.
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. Also, please be sure to register for the Special Fathers Network biweekly Zoom calls held on the first and third Tuesdays of every month.
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 Dad to Dad podcast was produced by Couch Audio for the Special Fathers Network. 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.