304 – Dr. Greg Pursley of Jackson, MO A Chiropractor, Author & Father Of Two Including A Son With Dwarfism

Transcript:

Tom Couch: [00:00:00] Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics mission at HorizonTherapeutics.com.

Dr. Greg Pursley: We were in the basically lobby area of Children’s Hospital, and they, over the intercom at 3 in the morning, call “Greg and Sheree,” which is not a good sign. So we wake up and we’re like, what? “Please report to…” whatever, and they take us to the grieving room, let us know what has happened and they’re working on him. And the lady slides a grieving book across the table. And I’ll never forget, my wife slaps that book and slides it back at her and goes, “We will not be needing this today.”

David Hirsch: Oh my God.

Dr. Greg Pursley: It was so certain. Like she just, like I believed her. She knew.

Tom Couch: That’s our guest this week, Dr. Greg Pursley, a chiropractor, owner of PC Medical Centers, and an author of two books available on Amazon. Greg and his wife, Sheree, are parents to [00:01:00] two children, including Izaac, 16, who has dwarfism. We’ll hear about Greg’s life and his thoughts on raising a child with special needs. That’s all on this Special Fathers Network Dad to Dad Podcast. Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, and thanks for listening to the Special Fathers Network Dad to Dad Podcast, presented by the Special Fathers Network, a dad to dad mentoring program for fathers raising children with special needs.

David Hirsch: On Saturday, May 11th, the 21st Century Dads Foundation will be hosting its 5th Annual Special Fathers Network Dads Virtual Conference. This year’s theme is SELF CARE: Being Selfish So You Can Be Selfless. We’ve assembled a great roster of presenters and there will be plenty of time for small group breakouts so you can meet like-minded dads striving to be the best dads they can be and to help their children reach their full God-given potential. Registration is free. For more information and to [00:02:00] register, please see the show notes or simply go to 21stCenturyDads.org.

Tom Couch: So let’s listen in now to this conversation between Greg Pursley and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Dr. Greg Pursley of Jackson, Missouri, a chiropractor, owner of PC Medical Centers, author and father of two, including a son with dwarfism. Greg, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Dr. Greg Pursley: Absolutely. I really appreciate you having me here and I hope I can add value to the listeners.

David Hirsch: You and your wife, Sheree, have been married for 19 years and are the proud parents of two children: daughter Eveekay, and son Izaac, who has dwarfism. Let’s start with some background. Where did you grow up? Tell me something about your family.

Dr. Greg Pursley: Sure! I grew up in Lonedell, Missouri. It was a small farm town. Most of the inhabitants of Lonedell, Missouri were my family. [David chuckling] So my mom and her whole family basically lived in that area. My Grandma was one of, I believe, 13 [00:03:00] siblings, and 7 of them lived within about, I’d say, 10 square miles.

David Hirsch: Wow.

Dr. Greg Pursley: My cousins and great aunts and great uncles and all that. So it was a really cool, fun environment. They were farmers, cattle farmers. My mom and dad were hard workers. Dad, electrician, as well as multiple different other things. He became a preacher later on in life. One of those guys that just sets his mind to something and just does it. Like he just never stops.

Dr. Greg Pursley: My mom worked as a dental hygienist for a little while or a dental assistant for a little while and then went and worked at a major corporation, Fabick Caterpillar. You might have recognized that. And she worked her way up over a period of 30+ years to literally the highest she could get. She was the parts director and the highest you could get without the last name, Fabick. Consistency, steady, hard work, dedication, discipline. Those are the things that I would say my parents were. And what’s interesting is they were always there for any of our sports and any of our stuff. So looking back, I could say certain things that I [00:04:00] would have maybe had different, but it turned me into the person I am today. And I really like who I am. If I would have changed anything, I’d change who I am today.

Dr. Greg Pursley: But I learned a lot of things by messing a lot of things up. I had a lot of freedom to mess things up, let’s just say that. And trying to fix them and hide them from my parents so I didn’t get in trouble taught me a lot of things about life and about fixing stuff.

Dr. Greg Pursley: So that was how I grew up, a lot of family. Our family reunions had over 200 people at each one of them. And so that was normal to me. I didn’t realize there was other ways to live. However, when I graduated high school, I was like, I got to go find out what this world’s all about. And so I left and went to college.

David Hirsch: Thanks for sharing. So what I think I heard you say about both your parents, including your mom and your dad, was they both had good work ethics. They were good role models. They raised you and your siblings, your three siblings. And you like how you turned out. Why be critical of some of the things they might’ve said or done?

David Hirsch: So I’m thinking about your dad. I’m curious to know how would you describe your relationship with your dad?

Dr. Greg Pursley: My relationship with my dad really had two [00:05:00] different, stages. The first stage was, you’re not good enough. Nothing’s ever good enough. It could always be better. And from his perspective, he was really trying to raise me to be strong, to take care of my family, to be a man of worth, if you will. However, I took it to mean that I wasn’t worthy and I wasn’t good enough and I wasn’t smart enough and I could never do enough and I’d never be enough. And so what that really turned into was insecurities that I think a lot of men deal with and face, and they’re afraid maybe to admit it, or afraid to bring it up, or don’t know who to talk to. Maybe they’re not afraid, maybe they just don’t know. Maybe they feel like it’s only them, because I felt like that for a period of time.

Dr. Greg Pursley: When I met my wife when I was 21 years old, we had a really great conversation. And at that point in my life, I decided that I wasn’t going to hide the truth, I was just going to lay it all out there. And if somebody didn’t like me for it, so be it. Having insecurity or low self worth, you think all the things that you’re saying are going to turn someone away. But when you just lay it [00:06:00] all out there, my wife says, “So let me get this straight. You’re 21 years old, you’re going to be a doctor in two years, you’re athletic, you can sing, you can play guitar, you’re handsome, you’re a nice guy.” To her, everything I said was just like, you’re a really great catch. And I looked at it and was confused almost. Whoever you’re talking about sounds awesome. Yeah that’s you. And so that was the turning point where I started to have a different understanding and perspective. It took probably another decade to really understand the dynamic between my dad and I and who he is and what he was trying to do and how we work together in certain ways and didn’t work together in other ways.

Dr. Greg Pursley: But now our relationship’s great. And I talk to him all the time and really look up to him. The guy went through a lot of stuff in his life, a lot of hardship and figured stuff out. And I really can’t fault him because when I look back, he grew up with his dad who, from what I gather, was not a great role model, was very narcissistic, very selfish. For a while when he was growing [00:07:00] up, I think he probably had a drinking problem and didn’t treat and set a good example to my dad and his brothers, which he had: three brothers and one sister. And so the fact that he was even there and that he provided and that he was consistent and he worked, that shows a lot about his character and who he is.

David Hirsch: So you’re just talking about your paternal grandfather, your dad’s dad, and the type of role model or influence that your dad grew up with. Maybe not optimal, but he was present and was a provider. I’m wondering, how about your maternal grandfather, your mom’s dad?

Dr. Greg Pursley: So he lived maybe a quarter mile up the street. And when you have a farm, you have tractors and you have cattle and you have toys and four-wheelers and all sorts of stuff. And you play with guns and as kids we would mess with the livestock and do dumb kid things. And so he was interesting because he would never yell at you, but he had this finger that he’d point at you and you knew if that finger got going oh man, I’ve done something, I’m in [00:08:00] trouble. And it was just a different perspective because my dad would just yell and scream and get mad and lose his, you know flip his lid.

Dr. Greg Pursley: My mom’s dad wasn’t like that. And he really had two sections, too. So I remember before he retired, he was very work-oriented. Constantly he would work all day and then he’d come home and work on the farm. And then the weekend he’d work on the farm. He just constantly, that’s what he did. My grandma was the same way. And he was one of the reasons why my dad, who was living in his car in high school, my mom’s dad took him in. And my dad, he basically said, “Hey, look, you play by my rules and work and I’ll take care of you.” That’s how I came to know how my parents got together and everything. And they lived, like I said, a quarter mile. So I, my whole life growing up that’s how far away. And there was pretty much any field you could go into. So I could take a four-wheeler and be gone all day. And I would do that. I’d take a four-wheeler and some guns and just be gone. And to some people that sounds crazy, but… That sounds crazy to me. I wouldn’t let my kid do that. I’m like, man. And my parents were like, yeah, just be home before dark. I’m like, okay. So yeah, it was [00:09:00] a very unique, but I’m very thankful for it because it taught me a lot of stuff.

David Hirsch: Yeah. Thanks for sharing. And I just have to emphasize that you’re talking about growing up in a very rural environment when you’re talking about guns and just going off on your own and being yourself.

Dr. Greg Pursley: Oh, very rural. 45 minutes from a Walmart. Okay. That sounds crazy to people. And I’m not talking traffic 45 minutes. I mean driving at 50 miles an hour for 45 minutes to get to Walmart. Yeah.

David Hirsch: That’s a lot different than growing up in an urban area.

Dr. Greg Pursley: Oh, yeah.

David Hirsch: Because if you’re talking about young kids like teenagers and guns, totally different MO, right?

Dr. Greg Pursley: Exactly.

David Hirsch: So anyway, thanks for sharing. So in addition to your dad and your grandfathers which we’ve discussed, are there any other men that played an influential role, perhaps father figures as well?

Dr. Greg Pursley: I was lucky. I had a lot of male role models all around me. Like I said, my dad had multiple brothers, three brothers, and learned different things from different times from them. My mom had a couple brothers, and same thing. Lots of work ethic. Lots of cousins, [00:10:00] older cousins. Our family came in two spurts. There was this first group of cousins and then there was this gap, and then there was the second group of cousins. And in the first group of cousins I was the youngest, and I was probably 14. My closest one was a senior in high school when I was a freshman in high school and then they got older from there. And so they tormented me a lot. And now it’s funny because they all, when we are at family events, they all are like, “Hey, don’t hurt me!” Whatever. They like apologize and beg for it. I’m like, look, man. Like I said, I like who I became. But they always like to bring up old stories. I’m like, yeah, I remember that differently than you remember that, but…

David Hirsch: Oh, it sounds like you emphasize there’s a lot of first relatives, cousins for that matter, right? That grew up in a very small rural community where you got to know each other really well over a longer period of time.

Dr. Greg Pursley: Yeah that’s really all you had to do was hang out with them. You couldn’t go walk to the baseball park. Like the nearest baseball park was, I don’t know, the next town over. So it was just a lot of mischief. We just got into it. [00:11:00] We learned a lot of stuff, but it was from playing with things and trying to figure stuff out. And I did a lot of FIO, a lot of figure it out.

David Hirsch: So my recollection was you did your undergraduate at Hannibal-LaGrange, and then you did your grad school at Logan Chiropractic College. And did you know from an early age that you wanted to be a chiropractor or how did that…?

Dr. Greg Pursley: Yeah, when I was really young, my mom even remembers and tells me that I wouldn’t take medication. Like that was just always something, I wouldn’t take ibuprofen or pain meds or whatever. So when I was a junior in high school, my anatomy class took a tour to the local clinic. And so as a junior in high school, I knew this is what I want to do. So I went to Hannibal-LaGrange to play baseball instead of going to a bigger school like Mizzou or something. Because if I went to a bigger school, I was going to sit the bench for three or four years. But at Hannibal-LaGrange I could start for two years. So I went there and started and had a good time, but I realized big leagues probably wasn’t in my future as far as that goes. So I decided that I’d go to grad school. So I took my two years at Hannibal-LaGrange, left. And when I graduated with my [00:12:00] associate’s degree, we walked on Saturday, I moved on Sunday, and on Monday I started Logan, the accelerated science program. I did that for 8 months. Got the rest of my hours that I needed and started grad school and I was 19.

David Hirsch: Wow. Have you always worked at the same business, this PC Medical Centers, or was there a stop before that?

Dr. Greg Pursley: There’s 10 trimesters in chiropractic college. In trimester four, I met my wife. In trimester six, we got married. In trimester nine, I had a kid and then I graduated after tri 10. So after graduation, I didn’t really know where we were going to go, what we were going to do, but we ended up acquiring a practice two hours away from our hometown in Cape Girardeau, Missouri. And it started, I was Pursley Chiropractic. That was the name of it. And then we started to grow it. And two years later, that’s when our son was born. So I had a two and a half year old daughter, a practice that was about a year and a half old, and my son was born. And that’s when everything took a turn. Everything went in a new direction, let’s say. Because he was born with dwarfism and we had no idea until the day he was born.

David Hirsch: Before we jump into that and the world of special needs, I’m curious to [00:13:00] know, how did you and Sheree meet?

Dr. Greg Pursley: Through a mutual friend. So there was a girl that was in a class, that was in one of my accelerated science programs class at Logan, that she was the mutual friend. So we were at the beginning of a trimester party. Every year we had a beginning of the trimester and end of the trimester party. I had just turned 21. Brittany was her name, was our mutual friend, and she was there with my wife, Sheree, future wife. And I said, “Hey Brittany, who’s your friend? She’s the most beautiful girl I’ve ever seen. Who is that?” And so Brittany’s oh, that’s my friend Sheree, whatever, and they go sit down. And then Sheree, or Cherie, depending on which mood you’re in is which one you say it, she says, “Brittany, who’s that guy? Why was he pointing at me?” You have to understand, we tell this story all the time. My wife tells this story like this. You have to understand Brittany is a 10 outta 10. She is gorgeous. She is a blonde, fit, athletic, gorgeous person. So my wife goes, “You’re telling me he told YOU that I was the most gorgeous girl he’s ever seen? He’s either blind or dumb or something. What [00:14:00] is wrong with this guy?” About 30 minutes later, I decided that I was just going to go for it. So I went over there and grabbed Sheree’s hand and we went out on the dance floor and started dancing.

Dr. Greg Pursley: That night I had come to the party with all my guy friends. They had driven. And she had come to the party with all her girlfriends and she had driven them. And by the time we got done talking, the lights came on. It was 3 a. m. And she had a car. I didn’t. She had been drinking. I hadn’t. And so she’s like, ” What are we going to do?” And I was like, “I’ll just drive you home.” She’s like, “You can’t drive my Jeep.” And I said, “Why can’t I?” And she goes, “It’s a stick shift.” And I’m like, “I grew up on a farm. I’ve been driving a stick shift since I was 10.” She’s like, ” Oh my gosh.” So that was how we met. It was a really cool little story. One of those times where you meet somebody and you just click and you just go.

David Hirsch: Yeah. It’s sort of ordained, right? People say, oh, it’s a coincidence. I tend to think that God has a way of doing things and you can’t connect the dots looking forward. You can only look backwards and put it all together.

David Hirsch: Let’s talk about special needs first on a personal basis and then beyond. So Izaac’s your number [00:15:00] two. You had mentioned a moment ago that he has dwarfism and I’m wondering how did that diagnosis come about? Did you know it in vitro? Did you find out right at the time of birth? Or was it done later?

Dr. Greg Pursley: He was a scheduled C-section. The entire pregnancy was normal. We had ultrasound at 20 weeks. That looked normal. Everything looked good. So we went in for the planned C-section because my wife had an emergency C-section with my daughter. They didn’t want to take any risks, so they just planned a C-section with him. And so we went in 7 am. Went for the planned C-section, all that anticipation. You got your funny hat on, you got your slippers on, and you’re all excited. And it was just a different experience. With my daughter, when they did the C-section, they got her all cleaned up and handed her right to me. With him, they did all everything and then they basically said, “Here’s your son. We’re gonna go and check him out.” And off they went. And I was like, looking back, that’s odd. At the moment, I was just like, oh, okay, whatever, different hospital. Maybe it’s different. I don’t know. And so we got my wife all situated and everything. We went back to the room and she’s like I want to hold my kid.

Dr. Greg Pursley: [00:16:00] So they finally brought him in later on and we’re all sitting there and I’m holding him and my wife’s holding him and then my family comes in and everybody’s just hanging out. And finally I’m sitting there in a chair and I still have a picture of it where I’m holding him and my daughter’s there and we took a picture. And right after that picture the doctor comes in and says, “Hey, I need the family to leave. I need to talk to the parents.” And that’s odd and I remember my dad looking at me and goes, “Everything okay?” And I was like, “I think so.” So they all leave. And yeah, the doctor says, “We’re almost positive your son is born with dwarfism.”

Dr. Greg Pursley: And so we were like looking at each other going, we have no family history of this. What does that mean? Now, luckily I had a little medical background, so I knew a little bit. I’m like, okay, that’s a genetic thing. We don’t have any family history. Come to find out people that are born with dwarfism have 80 percent of them are born without any family history at all. They’re average height parents, no family history. It’s a genetic change in the third trimester of pregnancy, when the bones go to grow longer, that part of the genetic chain doesn’t activate. It just doesn’t work. It’s broken or it doesn’t work. And [00:17:00] so that is what actually develops dwarfism.

Dr. Greg Pursley: Now there’s over 200 types of dwarfism. He has the most common, which is called achondroplasia. To break that word down, A means no, chondro means bone, and plasia means growth. So no bone growth. It means it doesn’t grow long. So their bones are typically shorter, but the long bones especially, and they’re softer. What’s interesting about him is he was actually born with there’s a thing called polydactyly, and that is extra digits. He had an extra pinky toe on each foot and he had the beginnings of an extra finger on his right hand, an extra pinky finger. And so we find out he can live an average life and all that.

Dr. Greg Pursley: And then within the first three months, he starts to have breathing problems. And we’re visiting the geneticist because they’re worried about something called polydactyly short rib syndrome, which is a form of dwarfism that basically the ribs compress the lungs and there’s no cure and within three years they can’t support themselves anymore. So we were worried about that for a long time.

Dr. Greg Pursley: At three months old he started requiring oxygen to supplement because he couldn’t keep his [00:18:00] oxygen level up. Come to find out later on, it was because he was actually breathing in micro aspirations and causing his lungs to build up fluid which turned into bacterial infections. And so from three months to nine months, he kept fighting off different bacterial infections. At nine months old, he finally got a decompression surgery. And he also later on at about 11 months old, he had to have a trach vent to help him breathe because his lungs would not support him anymore.

Dr. Greg Pursley: So we celebrated his first birthday at Children’s Hospital. We celebrated my daughter’s third birthday at Children’s Hospital. And our lives were forever changed. She was being passed around and really overlooked. You talk about a two and a half year old who has a younger sibling and now all the attention is on the younger sibling.

Dr. Greg Pursley: And we were in survival mode. Keep him alive, keep the family together, try to make enough money. Like it was just, it was… And we talk about my, that first book we talked about earlier was the book I wrote called, A New Kind of Normal. And it was really me talking about the direction we thought we were headed, and then he was born, and what happened to every [00:19:00] member of the family, and how it affected my daughter and my wife and me, and how the new normal became chaos. Just try to make it through. But there’s a lesson in that. It’s always finding what’s good about this. That’s one of the things I learned in that process.

David Hirsch: Thank you for sharing. It sounds like quite a chaotic entry into the world, Izaac’s entry into the world. Typical birth, C-section birth. If I can just paraphrase what you’ve said. You get this news shortly after his delivery that they’re almost certain he has dwarfism. This puts you down a path that you couldn’t have anticipated. Three month breathing problems, oxygen, micro aspirations. Nine months, things start to heat up. And then you guys make a, probably what sounds like a difficult decision at 11 months to do a tracheotomy and he’s on a vent. And how long was he on a vent for?

Dr. Greg Pursley: Total, he was on the vent until he was eight years old, eight and a half years old. And then nine years old is when he actually got the trach sewed up, the actual tracheotomy sewed up or [00:20:00] closed. It really didn’t get sewed up. It got closed. The first three years from when he was one years old to four years old, he was pretty much on the vent all the time. Like when he first got on the vent, if he disconnected, you had 15 seconds to get him. And if you didn’t, he was going to pass out. That’s how weak his lungs were. He had no reserve. Started to get better and we were able to come on and off a little bit until he was four. Then he got RSV, sent him back. So then he had to get back on a hundred percent of the time. So when he was first on it, it was a hundred percent of the time, max settings, all oxygen, a hundred percent of the time. Just to give people perspective, we personally revived him four times.

David Hirsch: Wow. The hyper-vigilance, that’s what I think of that comes along with having such a fragile child, right? Because you know, like you said, if that becomes disconnected, somebody has to be right there, right? No wiggle room. Somebody has got to be there 24/7.

Dr. Greg Pursley: Yeah, and we were lucky enough to live in the country we live in, in certain aspects, because in other countries he wouldn’t have made it because he wouldn’t have had the surgeries, he wouldn’t have had the resources. And we had [00:21:00] nursing help after a little bit that would come in and watch him at night so we could actually sleep. He was on multiple different pieces of equipment that would have alarms: a sleep apnea belt, pull socks, he had a heater on the vent. If there was a heater malfunction at all, it would beep. He had the vent itself that would beep. So any one of those things could cause beeping. And If no one else was there, you would have to get up and go and check it. It was just one of those times. We call those years the sweatpants years, my wife and I do. [David chuckling] Because it was just, working out wasn’t a priority. We were just trying to get by, eating whatever, just didn’t focus on health a whole lot.

David Hirsch: Yeah. Thanks for sharing. Looking back, he’s 16 now. Was there some advice you got maybe early on that helped you put the situation in perspective, helped you more than just survive?

Dr. Greg Pursley: I can’t remember any specific advice, but the mantra was just keep going. I think that’s where I really developed the phrase, what’s good about this? I always ask that question about anything. What’s good about this? [00:22:00] We are opening ourselves up to an opportunity to meet people we never would have met. We go to the Little People of America convention every year. We’ve met so many people we never would have met. It made us stronger instead of driving us apart. It made my daughter grow up real fast. She became very mature for her age, which has turned out to be… she’s a remarkable young woman. 18 year old that’s well beyond her years when it comes to maturity. So there’s a lot of good that comes out of it.

Dr. Greg Pursley: It depends on what you focus on though. You can focus on the woe is me, why me, the bad, the pain, the frustration. And it’s okay to go there, you just don’t want to stay there. You want to bounce back out and go back into a positive frame of mind. What is good about this? There’s Bible verses that talk about this. “How long must I wait?” is one of the ones that kept ringing in my ear. But it was basically, look, it’s not going to be like this forever even though it seems like it sometimes. You just got to look at it and say, what positives can I find in this? And that’s turned into my mantra. Anything that happens, whether it’s something that I enjoy or don’t enjoy, I always ask, what’s good about this? What is this supposed to be teaching me? What can I [00:23:00] learn?

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 I’m thinking about turning points and it would seem that coming off the ventilator was a big turning point. Have there been other turning points in Izaac’s health or his development?

Dr. Greg Pursley: Going back to when he was really young, one time he had an episode where he plugged off. He was intubated. This is before his trach and vent. So he was real young, before one years old. And he plugged off. And we were in the basically lobby area of Children’s Hospital and [00:24:00] they, over the intercom at three in the morning, call, ” Greg and Sheree,” which is not a good sign. So we wake up and we’re like, what? “Please report to…” whatever, and they take us to the grieving room and they let us know what has happened and they’re working on him. And the lady slides a grieving book across the table. And I’ll never forget, my wife slaps that book and slides it back at her and goes, “We will not be needing this today.” It was so certain. Like she just , I believed her. She knew we will not be…

Dr. Greg Pursley: That was a big turning point. That was basically her declaration of, we’re gonna fight for you no matter what. So after he got the trach, she would hang out with him in the room and he was sedated and she would say, he would always respond to Mickey Mouse Clubhouse and she would always say, “Once we get out of here, I’m gonna take you to Disney World. Once we get out of here.” And so when he was three years old, we were able to do that. Take him to Disney World. And most of her family, my wife’s family, went.

Dr. Greg Pursley: Those were big events, big turning points. When he had the RSV, he went backwards. That was a big turning point because you have hope, you have this [00:25:00] movement, this momentum, and then you backslide and there’s this psychological we’re almost there. But, looking back, he probably wasn’t strong enough in the first place if he couldn’t handle an RSV. But when he was eight and he got that trach out, we took all the medical equipment in his room and moved it out of his room that he didn’t need anymore. Repainted his room, got him a new bed, and it was like a new beginning almost, at that moment. And he was eight, and I’ll never forget, he got so excited. He like started snapping his fingers. Like he didn’t know what to do. Like his body was just in this like excite…. When he came into that room, it was like a new beginning and that was a big turning point. So that was pretty cool. That was my wife’s idea.

David Hirsch: It sounds like a liberating experience, right? To come off a ventilator, right? If you’ve been ventilator-dependent for all of his life, certainly whatever life he could recall or knew, to be free. Just to not be tethered to something, just to breathe. That’s exciting, right? I can envision the story that you were just relating and how excited he was. Like, this energy is just… he doesn’t know what to do [00:26:00] about it. Thanks.

David Hirsch: So you talked a little bit about the impact that Izaac’s situation has had on his older sister and how mature she is given her relatively young age today. But I’m curious to know what impact his situation has had on your marriage or your extended family for that matter.

Dr. Greg Pursley: Our extended family really didn’t get it. They didn’t understand the complexity of it. When there’s a Thanksgiving event. ” You guys coming? Why can’t you come?” I don’t think you guys understand the complexity here. The risk, driving two hours, back roads. If anything goes wrong, we’re not around any resources that’ll be able to help. And I don’t expect them to get it because they saw glimpses of it and they only saw us at his best.

Dr. Greg Pursley: I do remember one time that my dad, my son, and I went somewhere. I don’t remember where, but we all stayed the night in a hotel. And Izaac had his vent, and so we were in the same hotel room, and so every time he rolled over, any time he coughed, any time there was any resistance in that tube, it beeped six [00:27:00] times. Beep. Beep. Beep. Beep. Beep. Beep. If it stopped, it was fine. It was just a warning. If it got to seven, I’d hop up. I had been trained to that beep. So I knew when it hit more than six beeps. Every time it hit any beeps, he was like, “Are you going to get that? Are you going to do something? It’s the middle of the night. What are you going to do?” And I remember him saying the next day, he’s like, “Oh, I get it now. I understand.” I’m like, yeah.

Dr. Greg Pursley: To go on a trip, we had a ventilator that weighed 80 pounds. And I hope nobody takes this for complaining. Because this is not complaining, it’s just the reality. I’m just stating the way it was. Because I’m very grateful that we even had the option to have a ventilator to help him breathe, okay? You know how when you travel, you have a suitcase? I had my suitcase with his stuff and my stuff. And then we had a ventilator that weighed 80 pounds. That was over my shoulder. We had a suction unit. That was over another shoulder. We had a backup battery pack and a heating unit and an oxygen tank and a stand. And so to go to bed it’s not like you just lay [00:28:00] down. It’s okay, put the stand up, got to get the oxygen on there. You got to put the vent on there, take it out of its carrying pack, change over the cone. You had to have extra supplies for everything because if a cone cracked, which was the connection between the vent and the tube… so there was just a lot more to it. To us it was normal. It’s just what you do. And I think everybody that has a kid, not everybody but for the most part the average parent, will do whatever it takes for their kid

David Hirsch: So I’m thinking about supporting organizations. You didn’t make reference to it specifically but I believe the Disney trip when Izaac was three was a Make A Wish trip.

Dr. Greg Pursley: Yeah.

David Hirsch: So that’s part of the Make A Wish Foundation. So obviously that organization, at least for that experience, played a very important, role, right? It was something that meant something to Izaac. It meant something to the whole family, the extended family for that matter, to be able to go to Disney and have that experience. Were there any other organizations that have played an influential role on Izaac’s behalf or your family’s behalf as well?

Dr. Greg Pursley: Oh yeah, multiple ones. When we [00:29:00] took the trip to Disney, it was a Make A Wish trip, so we’re very grateful for Make A Wish. That was very amazing. We were able to go to this place called Give Kids the World, which is near Disney and they basically use it for Make A Wish and returning people who have been on Make A Wish trips. It’s all volunteer-run and all donation-run. It’s just a really cool place.

Dr. Greg Pursley: The Little People of America has a… they work together. It’s called Dwarf Athletic Association of America. It’s called DAAA. That organization has helped Izaac. He is so into sports. He looks forward to participating and they always have the DAAA Games during the Little People of America conference. So both of those are major.

Dr. Greg Pursley: The Ronald McDonald House was a major help during the times when he was in hospital for six weeks or eight weeks or three months. Yeah, they would charge us $7.50 a day to stay there. I mean it was ridiculous. People would donate food and coffee and just a really cool organization that was as well.

Dr. Greg Pursley: The Challenged [00:30:00] Athletes Foundation, CAF. He’s gotten some grants over the years to help him get different things like a customized bicycle to help him actually ride a bicycle or to help him go to the DAAA Games. So that’s a huge organization as well.

Dr. Greg Pursley: Those are the ones that have played a major part nationally, I would say. But there’s even a local special needs baseball club that helped him participate in some baseball activities. That was really cool. But yeah, there’s a lot of organizations that have played a huge role and it’s given us the opportunity to have the desire to give back to those organizations. And so we do a lot of awareness and fundraising and donating and those type of things. Posting online and things to give people the awareness that these organizations do really help individuals and it makes a big difference.

David Hirsch: Yeah, thanks for sharing. I’ll make a special effort to include information on each of those in the show notes so it’ll make it as easy as possible for one of our listeners to follow up. Let’s switch gears and talk [00:31:00] about your books. You made reference to the first of the two books, A New Kind of Normal, which came out in 2012. So what’s the backstory on that?

Dr. Greg Pursley: A New Kind of Normal was… So yeah, it’s an interesting backstory of how it came about. So when Izaac was in Children’s Hospital, it was two hours away from my hometown. My daughter was being passed around to my family and my wife’s family, which was two hours away from where we lived. So everybody was two hours away from each other. I would come home from work because I was the only income source. My wife was in St. Louis with Izaac, my daughter’s with our family. So I had a lot of time in the afternoon, evenings after work, to just be alone. So I would write down all my thoughts. I actually journaled it on my computer and just had a diary basically.

Dr. Greg Pursley: And I would put everything in there: my fears, my worries, my concerns, financial concerns, emotional, mental, physical, like everything. And about, I don’t know, a year of doing that, my computer had some sort of glitch and I didn’t want to lose certain things. So I printed off that [00:32:00] journal, but I tried to print it off at work. It didn’t go, it didn’t work. And I forgot about it. But when I got home, it connected to my home printer and printed, which was in our basement. I didn’t see it, didn’t even pay attention, didn’t know. I go back to work the next day, my wife’s in the basement, sees something on the printer, picks it up, starts reading it.

Dr. Greg Pursley: That night on the way home, she calls me. She says, “Is everything okay?” Because I had written everything in there. I’m like, “What do you mean?” She’s like, ” I just read this thing that printed off.” And I’m like, “Oh man.” And she said, “You need to turn this into a book. This needs to be a book.” And so that’s where it came from.

Dr. Greg Pursley: So I contacted, I believe it was 23 different publishers. And they all wanted to do self-publishing. It’ll be $3,000, $4,000 to put it together or whatever. And I’m like, you guys don’t understand. I don’t have any money right now. Like I am broke. So I’m not doing that. Finally, after a bunch of attempts, one of them finally said, we want to publish your book. So that’s how it got published.

Dr. Greg Pursley: And it just categorizes the first three years of our life and the different struggles. Like one of the chapters is a simple trip to Walmart. And we would try to put our son and our daughter into normal activities and [00:33:00] try to be involved as much as possible, even though it was a pain and it took a lot longer to go to Walmart with Izaac, we wanted him to go to Walmart, experience it. So we would go to Walmart and I would have a cart for the groceries and she’d have a cart for him and all of his equipment. Or my daughter had a Barbie Jeep and we would hook up a wagon to the Barbie Jeep and we’d put all of his equipment there and my daughter would drive him around in the Barbie Jeep. And so we tried to normalize his life. And I think in certain aspects that turned into why he’s very confident and just outgoing, very outgoing.

David Hirsch: Yeah. What I think I heard you say is that this is just part of your own therapy, right? Getting your thoughts out of your mind, typing them into your computer. It gets printed off inadvertently. You intended to print it, and the way that Sheree learns about this and how it becomes an actual book. And it’s authentic, right? This is just things that were going on that were then the current reflections that you are having. I’m very curious to dive a little bit deeper into that. [00:34:00] I did have the opportunity to read your second book, the title of which is Fix Your BS. Most people probably think that BS stands for what it normally stands for. In a creative way, the cover of the book highlights BS stands for ‘belief systems.’ So I thought that play on the call it acronym for BS is a very creative one. What’s the backstory? That book just came out in 2023. So a decade or more transpired from book number one, A New Kind of Normal to book number two, Fix Your BS.

Dr. Greg Pursley: So yeah, during that time, you go through a lot of internal struggles. The initial part was a very, “Why me? How could this happen? What did I do wrong?” You blame yourself, you blame other people. Then you start to kind of change your perspective and say, “We’re going to make the best of it. What’s good about this?” type deal. And I went through a lot of self-help programs trying to figure out my own mindset and my own thought processes, my own beliefs about what was going on and just trying to internally search myself.

Dr. Greg Pursley: [00:35:00] And through that process, I learned a lot about humans and what drives us and how our habits and our processes make a huge difference into the result or outcome of our lives. And I wanted to take the things that I had learned from experience but also from other individuals that I learned from and just document them into a system that people could put into their life.

Dr. Greg Pursley: What I found was in working with hundreds of people now is that most people are living someone else’s idea of the life that they should live. Their parents, their father, some other role model in their life that says you should do this. And then they go into that path, but it’s not their true identity of who they believe they should be. So there’s a disconnect. So then they’re unhappy. And I found out most people don’t know how to change it. They’re too afraid to take the action because they can’t guarantee or predict the results.

David Hirsch: So I just love the whole piece of work. Let me just emphasize that it’s short, it’s a simple read. It’s the type of thing that no matter [00:36:00] whether you’re just somebody who’s starting out, like a teenager or somebody who’s college age, you’re somebody who’s in the middle of their career. Maybe somebody who’s at an inflection point, right? You’re not where you want to be. There’s some basic steps that I think that anybody could adopt or incorporate into their situation. It’s not a silver bullet. It’s not one-size-fits-all. Concepts that I think are easy enough to embrace. You’re not talking over somebody as a doctor with medical terms. These are just practical ways of thinking about things and then action steps, right? It’s like almost a workbook the way you’ve outlined this.

David Hirsch: So I’m thinking about advice now and I’m thinking about parents raising a child with special needs, specifically the dads. And I’m wondering if there’s one or two pieces of advice that come to mind.

Dr. Greg Pursley: Sure, absolutely. First one is you’re not alone. You’re going to have the tendency to want to internalize it because most men feel like I’m the man of the house. I have to produce, I have to be strong. I have to protect my family. That’s where I was for a long time. And all that led to [00:37:00] was two things. Number one, I wouldn’t show any emotion and I would try to be the strong one until I got to a point where it would just overflow. And I’d have literally an emotional breakdown, if you will, where all the emotions came out at once. Number two, when that occurred, my wife would actually say, “Don’t take this the wrong way, but I’m glad you’re showing your emotion because I thought this wasn’t affecting you at all. I thought you were just no big deal. And I’m over here having a hard time and you’re just like, it’s fine.” And I’m like, “No, it wasn’t fine for me at all. I’ve been having a really hard time too.” Turn to your support system, your relationships, and actually have deep, meaningful conversations, and don’t try to be the hero. It’s hard, and it sucks at times, and it’s scary, and emotional, and fear, and frustrating, and it’s okay if you understand that those emotions are there to serve you and teach you something.

Dr. Greg Pursley: And if you think of it that way, then when the emotion rises up, you go, “Oh, interesting. What is this trying to teach me?” And I [00:38:00] didn’t learn that until I was there. And that was outside of after we had dealt with all that. So if I’d known it in the middle of it, it would have helped. I think it would help me, which is why I took the time to write the book so it would hopefully help other people.

David Hirsch: Yeah. Thanks for sharing. You’re not alone. And talk about things, engage, right? I think that’s what I heard you saying. So why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?

Dr. Greg Pursley: Because I think when you learn something or come to a realization in life in any area, I think it’s your duty to teach it to others. I think it’s selfish to keep it to yourself. I just think that’s wrong. And I just think it’s literally my duty as a man, as a person, to help others who may be going through a tough time wherever they’re at. And if I can help them in any way, shape, or form, and if I help one person, then I’ve made an impact.

David Hirsch: Yeah. We’re thrilled to have you. Thank you for being part of the network. Is there anything else you’d like to say before I wrap up?

Dr. Greg Pursley: Just if you’re in a situation where it’s tough, like I said, there’s people around you. You can reach out to me, you can direct message me. I’ll answer your questions. I’ll help in [00:39:00] any way I can. But there’s resources. There are more resources than you think there are. My wife actually got a job working for the state of Missouri as a Family Partner. And one of the requirements is that you have to have a special needs kid so you understand what people are going through. And what this organization does is it helps people with special needs kids find resources because the first thing you feel is you’re alone. You don’t know where to turn. You have more questions than answers, more emotion than you can deal with. And so there are resources out there and there are people that actually care. I mean you’re one of them.

David Hirsch: Yeah. Thanks for sharing. Let’s give a special shout out to Dr. Richard Schuster of the Daily Helping Podcast for helping connect us. If somebody wants to learn more about your work, the books, to contact you, what’s the best way to do that?

Dr. Greg Pursley: Really the best way is to either go to my website or Instagram, and both of them are the same: drgregpursley.com or drgregpursley on Instagram. And I help people and business owners and I have different programs and stuff, but that’s not the point. The point is to be there for a resource for other people and that’s just the way I work. So we’re [00:40:00] trying to just help others in any way that I can and teaching them the things that I’ve learned. So I was able to build a business that I could really transform it to run on its own. That’s very rare. That doesn’t happen a lot. I figured out how to do that. So we teach people how to do that. We have a special needs kid and we figured out how to keep our relationship together even though there were really hard times, so I’d help people do that. We had rocky finances for a long time, made a lot of mistakes. I help people avoid that. So I try to be a resource for people and I hope people will reach out. But either my website, you can go there, check out some of the stuff that we’re doing, or you can go to my Instagram, direct message me and get free information.

David Hirsch: I’ll be sure to include that in the show notes so it does make it as easy as possible for somebody to follow up with you. Greg, thank you for the time and many insights. As a reminder, Greg is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.

David Hirsch: Thank you for listening to the latest episode of the Special [00:41:00] Fathers Network Dad to Dad podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3, not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Greg, thanks again.

Dr. Greg Pursley: Absolutely. Thanks for having me.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re [00:42:00] 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.

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