Transcript:
Jamie Bark shares his story of caring for his daughters with Spinal Muscular Atrophy
Jamie Bark: What people told me about how you’re all going to grow together with a disability is so true. You’re going to learn and learn and learn. Each step, each challenge, they all don’t come all at once. So you just live each day one at a time.
David Hirsch: That’s our guest this week, Jamie Bark, former owner of Value Auto Glass. A widower and father of two daughters, including one with spinal muscular atrophy, Jamie tells the story of losing his wife of 30 years to multiple sclerosis and picking up the pieces so that he can care for his daughters. It’s a captivating listen and it’s on this Special Fathers Network Dad to Dad Podcast.
Jamie Bark: Dad to the dad. You’re not on your own. We walk this road together, heart and home.
David Hirsch: Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.
David Hirsch hosts the Special Fathers Network Dad to Dad Podcast
David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. Two brief messages. First, I’m thrilled to announce our new book, Dads Raising Children with Special Needs and A Guide for 21st Century Dads is now available on Audible, Amazon, Barnes and Noble and other sites. Second, the Special Fathers Network US tour, a 30 day, 50 state, 66 stop tour taking place from May 21 to June 21, Father’s Day. The purpose of the tour is to strengthen and grow the Special Fathers Network, to provide resources to special needs families, and to distribute 2,000 complimentary copies of my new book. For more information on the Special Fathers Network and all the tour locations, see the show notes or Simply go to 21st centurydads.org through every season, in every
Jamie Bark: stride, great dads are present. 247365.
David Hirsch: Now let’s listen in to this conversation between Jaime Bark and David Hirsch.
Jamie Bark is the proud father of two daughters, one with muscular dystrophy
David Hirsch: I’m thrilled to be talking today with Jamie Bark of New Richmond, Wisconsin, who is the former owner of Value Auto Glass, a widower and proud father of two daughters, including one with spinal muscular atrophy, a, form of muscular dystrophy. Jamie, thank you for doing a podcast interview for the Special Fathers Network Dad to Dad Podcast.
Jamie Bark: Thank you for having me. I’m, excited.
David Hirsch: You and your wife Jackie were married for 30 years before. Very sadly, she passed away in January 2025 after a long battle with multiple sclerosis. You’re also the proud father of two daughters, Maddie, 21, and Gabby, 17, who has a form of muscular dystrophy known as spinal muscular atrophy level 2. Let’s start with some background. Where did you grow up? Tell me Something about your family?
Jamie Bark: Well, I grew up in a little town called Baldwin, Wisconsin, about an hour from the Twin Cities over in Minnesota. Being a Wisconsin kid, I was raised to like the brewers and the packers, of course, and I respect the Bears. Our family had a bakery. It was Barks Bakery in Baldwin, Wisconsin, and my dad took it over from his parents. So it was in our family for just shy of 80 years. That’s where I developed a very strong sweet tooth. But, yeah, graduated from Baldwin Woodville High School. Barely, but I made it. The rest is history, I guess.
David Hirsch: When you were growing up, did you have siblings?
Jamie Bark: Yes, I’ve got two older brothers, Brad, who lives in Mississippi, and Rich, who lives in River Falls, Wisconsin. My mom and dad got divorced when I was rather young. I was about six years old, when my mom left. And so our dad raised us, the best he could, but he really struggled after my mom left and he ended up drinking an awful lot. That said, he was still a really good guy. He was still very well liked. He was a kind man. He was gentle, hard worker, but he kind of got lost in the bottle along the way.
David Hirsch: When you think about your relationship with your dad, how would you characterize it?
Jamie Bark: You know, in hindsight, I didn’t care for my dad all that much through my teen years, and I really regret that. I’m a youngest child and my dad was the youngest child, so I think we had that connection. I look back on the things he did, good and bad, and I’m really thankful for him now. Time has taught me to really, really respect the influence he had on me, both through the good things he did and also the bad things. Areas where he could have maybe done better. I can use that as a guide to how I treat my family and my kids. So, yeah, so it’s, it’s, it’s a learning, growing process. Unfortunately, we learn so much after they’re gone.
David Hirsch: Absolutely.
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David Hirsch: So any important takeaways, lessons learned that come to mind when you think about your dad?
Jamie Bark: It frustrated me back in the day when he would always say that he’ll always be there for me, but we didn’t spend a lot of time together. I always used to associate when he said the word there, he meant the bar down in the corner. So that was tough. I think I felt a little bit slighted. And so I’ve tried to make sure that if I’m going to say something to my kids that, like that, that I back it up a little bit more and I could always do a better job with that. Too. It’s tough. I mean, it always feels like the goalposts are moving a little bit. And it’s tough to know as your child gets a little bit older, too. They need a little bit more line, they need a little bit more lead to do their own thing and to learn from their own mistakes, too.
David Hirsch: Absolutely. The idea or thought that comes to mind is that actions, speak louder than words.
Jamie Bark: For sure.
David Hirsch: The less you say and the more you do, I think the better off we all are. And you do want to be able to reconcile what commitments you’ve made to the actions you’ve taken as well. So thank you.
How did you and Jackie meet? We actually met at church
So, any other men that played an influential role in your life as a young guy, or as a young adult for that matter?
Jamie Bark: Yeah, Jackie’s dad, my father in law, he was the one that encouraged me to learn a trade. I still didn’t know what I wanted to do, but we ended up meeting a family friend of his, and he was a trainer for a auto glass company. They needed a guy in their Hudson location, which is right on the border between Wisconsin and Minnesota. I got a job there and learned to trade, and it served me well for many years.
David Hirsch: It sounds like you had a good run. Right? With the career that you had, you’ve, been able to make the focus on your family a priority, which I really respect.
Jamie Bark: Yeah. Thank you.
David Hirsch: So I’m sort of curious now. How did you and Jackie meet?
Jamie Bark: We actually met at church. A lady that I knew, she invited me to go to her church. So I took her up on the opportunity and that’s where Jackie and her family were going. So. Yeah, so I guess we did that. Right.
Gabby has spinal muscular atrophy, type 2
David Hirsch: What is Gabby’s diagnosis and how did it come about?
Jamie Bark: She has spinal muscular atrophy, type 2, a form of neuromuscular disease that falls into the category of muscular dystrophy. So she just was not hitting just the little growth milestones. At about 10 months, she was crawling. But we noticed that she, just seemed a lot weaker and she would not crawl very far. She had no desire to pull herself up, to stand, to walk. And so I ended up taking her into her, well, child visit to the doctor a little bit early. And the doctor basically said, you know, a, youngest child will often train the family to do things for them. So not to worry, give her some time. She might have a little bit of a delay of some kind, but nothing to really worry about yet. And then at about the, oh, I don’t know, I think about 15 months old, I took a Video of her trying to crawl. She was like really, really stiff. Her arms were like completely locked out when she’d crawl. And then one day it almost seemed like her body was too long for her to support. And she kind of had that arthropod look where her hips would just kind of fall to the side with each kind of crawling stride she took. The next step was that she would flip her instead of crawling on her hands, she likes rotated her arm inward and made a fist. And with her arm rotated internally, she would kind of get up on her fist and just kind of peg leg it that way. So I took like a ten, second video of Gabby crawling and took Gabby in for her year and a half checkup at 15 months. And the doctor walked in the room and she’s fabulous. And she looked at me and said, okay dad, what’s going on? And I said, humor me, watch this video. And she watched the video and said, yeah, we need to get her up to Gillette Specialty and get her checked out. And
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Jamie Bark: she goes, don’t, don’t be surprised if this comes back being muscular dystrophy. And so for the next, I think three months or so it took to get her through the testing and that’s when we found out that she had spinal muscular atrophy. And we had no clue what that was. And later on we found out that it’s the number one genetic killer of kids under two years old. Yeah, so it was really tough. The doctor that diagnosed her, he was an 80 year old doctor up at Gillette and he was really old school in the way that he practiced in his bedside manner, if you will. And he actually called up Jackie when she was at work one day and said, said yeah, I just, I want to let you know that she was diagnosed. She’s got spinal muscular atrophy and it’s oftentimes terminal. And she was just left beside herself. She came immediately and told me what was going on and we were just really scared.
David Hirsch: So I imagine that was the fear of God, right? You know, oh my gosh, my daughter’s gonna die.
Jamie Bark: Oh yeah.
David Hirsch: Can you reflect back on that? What? She’s 17. That was 15 years ago.
Jamie Bark: Yeah, it was so scary because you know when you’re told that your child has a condition that mostly takes kids out by the time they’re two years old, we’re like, she’s 18 months. Do we have six months left with her? Is she going to decline so rapidly? How do we know what to do? You know, we didn’t have any specialty medical equipment in our house yet. That was all to come, though. And unfortunately, you don’t get that. Specialty medical equipment, oxygen or she has a shaky vest that she wears and we do treatments with that. And all of the nebulizers. We didn’t have a nebulizer. And, you don’t get that until your child is sick enough to require it. And so that was really scary. Catch the common cold and it would go through the household and Gabby would end up in the hospital. And it happened repeatedly and it almost always turned into pneumonia for her.
David Hirsch: Was there some important advice you got early on to help put things in perspective?
Jamie Bark: I believe it was our family doctor that said, now that you have some of these tools to take care of her, just realize that you’re all going to grow into this disability together. And so that just led me to believe that I can trust the process a little bit. And we’re just going to keep on learning as much as we possibly can to know how to take care of Gabby. You know, eventually we did learn that there are different levels, different types of spinal muscular atrophy. The lower the number, the more severe the condition usually is. So a type one child, usually, they’re a lot more fragile. A lot of them are on breathing machines and have feeding tubes and things like that. The vast majority of them are non verbal. And, you know, it’s really cool to see some of these kids now using things like the eye gaze computer to communicate. Seventeen years ago that really wasn’t being used.
You learned to be aggressive with Gabby’s treatments
David Hirsch: Yeah, thanks for sharing. When you look back on it, were there some important decisions you made that you can say, oh, if it wasn’t for this, you know, she wouldn’t be doing that?
Jamie Bark: I think we just really learned to pay very, very close attention. We learned really quick to be aggressive with her treatments. We learned that we needed to tap into the SMA community, if you will. We met other families and other kids and we realized that, hey, you know, we met a family with their child’s 14 years old with the same condition as Gabby. So we picked up little nuggets of hope along the way. Yeah, just to reach out to the community for help and for advice. You know, even if it’s conflicting advice, if one parent says this and the other one says, no, it’s not like that, it’s like this. You can accept both of them and just say, today we might use plan A. If that doesn’t work, well, we know about plan B. So that was probably the most helpful Thing in the early years especially.
David Hirsch: Yeah. Well, you made, two comments. One is to be, intentional about the treatments therapies and then the other is to surround yourself with others who have been there and done that.
Jamie Bark: Yes.
David Hirsch: Right. So that A, you’re not alone and B, hopefully you could see down the path or around the corner and anticipate. Right. So that it’s a little bit less of a mystery.
David Hirsch: 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.
Gabby was diagnosed with cerebral palsy in 2013
Now back to the conversation.
David Hirsch: And not to focus on the negative, but, what have been some of the bigger challenges that you’ve encountered as parents?
Jamie Bark: That fear at 2 o’ clock in the morning when you’re doing yet another round of treatments and I’m thinking, I gotta get up for work in five hours. And you’re afraid to fall asleep and miss that moment that Gabby needs your acute attention and thinking that, my God, I could lose her if I’m not with it enough. So you just. That hyper vigilance is just always there. And that was very, very difficult.
David Hirsch: I wonder what type of impact these challenging situations have had on Maddie, the older sister, your marriage, or your extended family for that matter.
Jamie Bark: You know, with the severity of Gabby’s diagnosis and the sicknesses, the hospitalizations, she’s had a few pretty major surgeries, including a full spinal fusion in 2019. The isolation that occurs is pretty drastic. When Jackie was around and more able bodied, she was the one that kind of kept in touch with family and friends. And I was working long hours because I knew there was a day coming that, I was probably going to end up being the caregiver for both. So we lost some friends along the way. We just lost touch with others. We used to host, most of the Christmas gatherings at our house. Eventually it became way too hard to do that and nobody else really picked up the ball. a few people tried, but the struggle that we had was that literally none of the places were accessible. And so then it’s just now Christmas is just the four of us.
David Hirsch: That’s pretty heavy. It’s really heavy.
Jamie Bark: Yeah. Jackie was diagnosed with, Ms. In 2013. You know, just two years after Gabby was diagnosed, we watched Jackie slip away very, very slowly at times, and other times it seemed very rapid. She went from walking, and occasionally she would, you know, before we had kids, she would run on the treadmill a little bit, and we played church softball, and she was active. To go from that to needing a walker and then being wheelchair bound was really, really tough. We, as a family, were grieving losing her while she was still with us because she wasn’t able to help the girls with a lot of things. You know, it felt like she was another person that I just needed to take care of. And I’m very thankful that I was able to do it as long as I did, but it’s kind of like I felt like I lost my wife, you know, while she was still here. And that was really tough to wrap my head around and tough to make sense with. So I got really good at distracting myself, whether it was with audio books or, you know, exercise. And then as far as Maddie goes, Maddie for years was telling us that she thought that there was something wrong, that she just could not stay focused, that she. She just felt like there was something different about her compared to the friends that she was going to school with. And so she ended up getting diagnosed
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Jamie Bark: with adhd, I believe, second semester of her junior year, or maybe early at the start of her senior year. And we felt so bad that she was trying to tell us for years that something just did not seem
David Hirsch: right
Jamie Bark: or the same as her counterparts.
David Hirsch: Do you think that since the diagnosis has been made that, she’s on a better path because of whatever treatments or medications that she has?
Jamie Bark: Yes. Yeah, definitely, for sure. actually, tomorrow, we have her graduation from technical school. she’s graduating from the criminal justice program. And, couldn’t be more proud of her.
Dad who has child with disability offers advice on taking care of himself
David Hirsch: So I’m thinking about advice now, and I’m wondering what advice you might be able to give a dad who’s close to the beginning of his journey with a child that’s been recently diagnosed.
Jamie Bark: The first piece of advice I always give to families in a similar situation, dads especially, I think we. I know for me, I kind of panicked at the start a little bit more than my wife did. My wife wanted to learn more, and I just felt the chaos. So what people told me about how you’re all going to grow together with a disability is so true. You’re going to learn and learn and learn, and each step, each challenge, they all don’t come all at once. So you just live each day one At a time, you kind of learn to triage what’s the most important thing. Let’s do that and not worry about the rest quite yet. And beyond that, you need to find a way to take care of yourself in the chaos. And when one thing doesn’t work, you try something else. When that doesn’t work, you try something else. I used alcohol for a while until it no longer served me, you know, and now it’s a lot of exercise. I run, I lift weights, I go for walks, I garden, I listen to audiobooks. When life is challenging and you can’t do hardly any of the things that, you know, works, deep breathing works wonders. Even if you just take three or four deep breaths, you know, take it in slowly for a four or five count, hold it for a four or five count, exhale for a four or a five count, do that three times, and you will always feel better. Always.
David Hirsch: Yeah. Pearls of wisdom. Pearls of wisdom. don’t panic. Learn to grow together one step at a time. Don’t overlook the importance of self care. That’s what I heard you say. And, try to have some healthy habits as opposed to the ones that aren’t so healthy. You know, the point I think you’re making is that you have to be selfish, take care of yourself before you can be selfless, to take care of your family members. And, if you neglect taking care of yourself, it’s hard to bring your A game.
Jamie Bark: Yeah. And, you know, towards the end, December of 2024 was when Jackie declined, like, really, really quickly. And within, oh, I think about three weeks, she went from being able to walk with a walker to needing a wheelchair. And she was enrolled in hospice. And we ended up making a bedroom for her out of our dining room. And I think it was less than a week after we got that room set up. She needed a nursing home where she spent the last year, 13 months of her life. Now, in February of 2023, I had a breakdown, and there was absolutely nothing I could do to stop it. I’d mentioned you in one of our earlier calls that I’m at the point in my life where the body keeps the score is really real to me right now. But, yeah, I had such a breakdown. We had a county cop in our house and trying to sort out why I was suicidal. And it was just the years and years and years of hypervigilance. And that stress eventually bubbled over. And after Jackie was in the nursing home and after that, that time, I mentally had to kind of take a step back and Learn to be selfish. And there’s a lot of times that I feel guilty about
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Jamie Bark: that. But I knew for the long run, I had to be there for my daughters. I couldn’t sacrifice myself. That was when I knew that I had to take a step back and had to carve out time for myself. I had to set goals for myself. Something for me to look forward to, just to keep going.
David Hirsch: Yeah. Well, thank you for emphasizing that. Hopefully those that are listening don’t get to the point that you were at. You know, with the break that you’re talking about, the suicidal thoughts and, thank God, right, You were able to turn the corner and get help and put yourself on a better path like you are today.
Special Fathers Network is a mentoring program for fathers raising children with special needs
Is there anything else you’d like to say before we wrap up?
Jamie Bark: You know, I think something that’s really helpful is to look at, take a step back, look at your life from the 30,000 foot level. I think of my life sometimes, that I am the lead character in a book I’m reading. And when things seem so impossible and out of control and chaotic and your back’s against the wall, you don’t have to quit. You don’t have to cut yourself off from everything and everyone. Stay in the story. turn the page. All you gotta do is turn the page, see what tomorrow’s gonna bring. It might be more chaos, but there’s probably gonna be some blessing there too. You know, just turn the page. You can make it one more step, you can make it one more day. And just keep that curiosity about what life is going to bring, because there’s a lot of good that comes with the bad, whether it’s the people you meet along the way or just being able to appreciate the little things.
David Hirsch: Yeah, very powerful. Thank you for sharing. Let’s give a special shout out to Jeff Myriad at Jack’s Caregivers Coalition in Minneapolis for helping connect us.
Jamie Bark: Yeah, yeah, Jeff is great.
David Hirsch: If somebody wants to contact you, what’s the best way to follow up Jamie?
Jamie Bark: Well, I’m not on Facebook a lot. They can find me on Facebook. There’s not too many Jamie Barks out there. They can definitely email me.
David Hirsch: I’ll be sure to include your contact information in the, show notes, so it’ll make it as easy as possible for somebody to follow up. Jamie, thank you for your time and many insights. As a reminder, Jamie is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor, father or are, ah, seeking advice from a mentor father with a similar situation to your own, Please go to 21st centurydads.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 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 electrical contribution? I would really appreciate your support Jamie. Thanks again.
Jamie Bark: Yeah, thank you David. I appreciate it. Dad to the dead. You’re not on your own. We walk this road together, hard and whole.
David Hirsch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21st
David Hirsch: centurydads.org 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 david04
David Hirsch: the Dad to Dad Podcast theme was written and performed by Shane Madden. The show was produced by me, Tom Couch. Tune in again next week for another intriguing conversation on the Special Fathers Network Dad to Dad Podcast.
Jamie Bark: Through every season, in every stride, great dads are present. 247-365-24-7365.
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