140 – Young Girl With Wolf Hirschhorn Syndrome Benefits From The Love Of Her Father & Mother’s Significant Other

Transcript:

Tom Couch: Special, thanks to horizon therapeutics for sponsoring today’s special father’s network. Dad to dad podcast, horizon therapeutics believes 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.

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Travis Jorgensen: Chris and I drove her to school one day, uh, when she first got her wheelchair and we get her all buckled in and lo and behold work, chit chat, and then she’s had some paralysis on one side, one handed wheels, herself across the crosswalk, right over to her teachers.

And both of us kind of looked at each other and laugh. It’s like, you know, what a blessing that we get to, uh, to witness this.

Chris Wade: Travis told that story because we just kind of knew that Luke is going to have all these challenges, but to see her that one day we will add a wheelchair on our own, across the parking lot was, you know, kind of an eye opener, uh, for me.

Um, I know it was for Travis. To never count these kids at Hawk,

Tom Couch: two guests this week on the dead Dan podcast, Chris Wade and Travis Jorgensen. Chris is a divorced dad of three kids. One of whom Luca has Wolf Hirshhorn syndrome, a rare congenital disease. And Travis is a stepdad of sorts too. Though, not married to Lucas model Leah.

He is a dedicated partner and caregiver of Luca and his siblings, Chris, Travis, and Leah all take turns, caring for those three. It’s a unique and beneficial situation. And we’ll hear all about it in this special father’s network, dad to dad podcast. Here’s your host, 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 father’s network.

Tom Couch: This special father’s 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 21st century dads.org.

And if your 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

death. And now let’s listen in to this conversation between Chris Wade, Travis Jorgensen, and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Chris Wade and Travis Jorgensen of Kirkland Washington. Chris is a military veteran as the biological father of three children, including one with special needs. Travis has been in the auto business for the last 25 years and is a father influencer for Chris’s.

Chris and Travis, thank you for taking the time to do a podcast interview for this special father’s network. You’re

Travis Jorgensen: welcome. Thanks

David Hirsch: for having us, Chris, you and your former wife, Leah were married for 11 years up until about three years ago and are the proud parents of three children, older son raised 13 younger son, Grayson 10 and daughter Luca five.

Who has. Hirshhorn syndrome, a rare congenital disease characterized by a distinctive facial phenotype seizures, intellectual disability, and developmental delays. For the record, I was referred to Chris by Louis Mendoza at the Washington state fathers network, after meeting and in advance of scheduling this interview, Chris reached out and indicated to present a more comprehensive story.

I should contact Travis. Before we get started. I’d like to say I admire both of you for your transparency or willingness to share your perspective and your shared commitment to the well-being of these three children. Chris, let’s start with you. Tell me something about your family and where did you grow up?

Chris Wade: See, I grew up in, uh, Mississippi. I was born and raised in Tupelo, I guess I come from the deep south. And I wasn’t born an only child to a government employee. My mom worked for social security for some 30 years or so, and my dad was a school teacher.

David Hirsch: Excellent. I’m sort of curious now, how would you describe your relationship

with your dad?

Chris Wade: Um, I have two dads, uh, my mom and my dad divorced when I was two, uh, both went on to remarry. Uh, my biological father, uh, he and I, uh, account, uh, him as well as my stepfather, among two of my best friends. It hasn’t always been that way, uh, especially with my stepfather, but now being a grown man and a father in my own.

Right. Uh, I understand the challenges that fathers and sons have, and I’m proud to call them both friends and call them both of them.

David Hirsch: Excellent. So I’m wondering if you were to think about your biological dad and then your stepdad, if there’s any important lesson learned or a takeaway that you think about, uh, when you think about each

one

of these.

Chris Wade: Yeah, I think that, um, from my dad, I definitely got my sense of humor is a really funny and, uh, very laid back guy, very outgoing in his own. Right. And from my stepfather, probably assertiveness. The complete salesman kind of mentality. He is always outspoken and very assertive, both in business and personal

relations.

David Hirsch: Okay. Good. Travis, uh, where did you grow up? Tell me something about your family.

Travis Jorgensen: Uh, I grew up, um, well, my parents divorced when I was five. My sister was three and my mom and dad were in Montana. I was born in Alaska, but we were in Helena, Montana. My mom, uh, bailed and went to Seattle. And, uh, so I’ve pretty much grown up in the Seattle region and lived here ever since my dad lives in Montana as a child.

So I, you know, back in the day when it was safe, my sister and I would jump on the Greyhound bus and take the Greyhound bus up to the, see dad for summers and winters and, and life with my dad was kinda characterized by it. Me coming home. And my mom putting us in the tub and scrubbing us for two hours because of course, dad didn’t make us bathe as much as mom did.

My dad was a construction guy, similar to what I do now, my whole life. And so I grew up on roofs when I was four years old and had a good relationship with my dad. When I was in my early twenties, I went and lived with my dad for about a year and a half. I just wanted to get to know him as a person. Uh, I think when we’re children, we look at our parents much differently.

And we do when we grow up. And I, I wanted to make sure that I haven’t a relationship with my dad. At some level you can just go, he gave me DNA and that’s who he is. But, you know, we have a pretty strong family on my dad’s side. My dad was pretty calm about things like didn’t get riled up too much. You know what I mean?

I think I saw my dad get angry about stuff, but overall, my dad just is a very get along kind of person. And not rock the boat, not make us think. And you know, I think I, I used the good part of that trait in my life a lot too, to be amenable to people and to kind of look at people and see the best in them.

David Hirsch: So what’s sort of interesting is that, uh, Chris, you grew up in the deep south and Travis, you were born in Alaska and, uh, you’ve sort of come together. I don’t know if it’s equal distance, but uh, you’ve come from literally different parts of the country and, uh, I, uh, I find that interesting and, uh, you’ve also had some different, um, sort of educational and career experiences as well, and not to go too deep.

But, uh, Chris, uh, from our member in a prior conversation, you went right into the army out of high school. Uh, what was it that you were thinking about? Um, and where did the, your service to the country take you from there?

Chris Wade: Yeah. So, um, yeah, I knew, uh, leaving high school. Um, I wanted to be my independent on a guy, right.

So I joined the single largest organization in the country, the United States army, right out of high school. Uh, I knew that I wasn’t ready for college. I knew that, you know, sticking around Houston where I did graduate high school was probably not such a great idea, had a good, a good bunch of friends, but it was also kind of a wrong crowd to be involved with with idle hands.

So, um, I joined the United States army and wound up serving in the signal Corps and that took me over to Germany for three years. Uh, Saudi Arabia for six months. And then he got out just after desert shield in 1992 from there. My, uh, I followed my mom and my stepdad. They had left Texas wound up in the east, east bay, San Francisco, Contra Costa county, and went to go climb trees for four years as an arborist to understudy.

And, uh, still wasn’t ready to go back to college. And, uh, today I still think it was my favorite job I’ve ever had. There’s just a lot of fun, kind of a cowboy type role out there. And then, uh, that was doing the math and looking at the calendar and the, the clock was ticking on the GI bill college fund that I had earned in the army and knew I need to get my butt back in school.

And I looked back at, um, where my dad lived still in Mississippi, at Mississippi state and the finances just pointed to Mississippi state. And I thought it’d be a great place to go and spend some time with my grandma and my grandpa. And, uh, spend some quality time with my dad. And so that’s what I did. I went back and, uh, went to business school and majored in finance and graduated in 1999.

David Hirsch: And from what I remember, you spent about 15 years in financial services as well.

Chris Wade: Yeah, absolutely. But, uh, 15, 16 years in various roles, uh, sort of in the back and middle office, uh, managing data and. Yeah, it was a very mixed feelings about financial services.

David Hirsch: Don’t say anything too bad because you do remember that I’ve been working in financial services for 35 years.

Um, you know, um, it’s not for everybody. I’ll just say that. Okay. Travis, back to you, um, from, I remember, uh, you, uh, started college, uh, you were focused on CAD drafting and, uh, your life took in a different direction. So, um, Where, where were you pointing and how has that transpired?

Travis Jorgensen: I think, uh, for me, I grew up with a single mom and at the kind of the tail end of graduating, we lived in a.

If I remember right. It was a two bedroom apartment, my sister and I shared a bed bedroom, you know, two twin beds on each corner of the room. And from an early age, I think I got my first job when I was 12. I, you know, had a full-time job in high school. Got good grades, but I didn’t have any direction. I didn’t have anybody to kind of tell me what to do and how to do it, how to get through college or pay for college or anything like that.

Somebody came to our career day or whatever, had this opportunity to go to a drafting school down in Arizona. And I thought that’d be a good idea. Spend two months on a fishing boat in Alaska. I made some money and went down to Phoenix and did a, basically a 12 month course to get my AA and in CAD and came back to Seattle under the guys.

I was going to be at a job doing that. I was great at it. Graduated top of my class. Every time I go to an interview, it’d be me and, you know, 60 people because Boeing had just laid off some engineers. And so they go, well, it’s you, but then we have another guy. Who’s got a family of three in a mortgage and 10 years experience.

So we’re going to go with him because they’ll take the same money. So I ended up going skiing for a season, lived on the mountain and then, uh, kind of flopped around in different jobs. And then my best friend, uh, who was a mechanic at a Ford store said, Hey, you’re great at sales. Sales and I got into the car business and, you know, kind of one foot in one or a couple years, and then decided this is what I’m doing.

And I’m really good at it and kind of buckled down and turned it into a career. So, uh, became a manager, uh, my sixth or seventh year, and then never really looked back. Um, and I heard a good comment the other day. It said, you know, don’t teach her what not to do. Uh, Teach your children, the things that you know, that nobody told you, you know, help them kind of round them out in that experience level of, yeah, I didn’t learn this when I was a kid and maybe I can teach that to, you know, the boys or my daughters and, and, you know, help improve their experience as they go through life.

So.

David Hirsch: Good, good, uh, words of wisdom there. Thank you for sharing. So, uh, w one of the things that the three of us have in common is that we eat. And I’m a divorced family, and I know that that affects each of us differently. Uh, not all good, not all bad, but, uh, you know, um, there there’s a lot more moving pieces.

I think. Um, when, uh, your parents, uh, don’t stay together, you both have been married. Chris, you and Leah were married for 11 years and split about three years ago. And Travis, you were previously married and have two teenage daughters. Um, when I remember they’re 19 and 17 and. I’m wondering if you can each reflect on being married and the circumstances that you are in now.

So I’ll let you go first, Chris.

Chris Wade: Uh, so it’s a, it’s a very open-ended question. Uh, my miles I’ll do my best. I think that I learned an awful lot by my own limitations and, uh, in marriage, the, one of the last things I ever wanted to do was get divorced. And I think that that definitely came out of, you know, being a child force, but boy, Uh, when it goes sideways, it really goes, you know, when it gets bad, it gets bad.

Right. It came time to, uh, split that it was the right decision. And it was one of the most, uh, painful decisions I ever made. I knew that Lee and I had a tremendous friendship at one point. And for whatever reason, uh, we had a tough time getting back to that. And sometimes it’s just kind of the right thing to do.

That being said, you know, I knew that in the marriage we had our kids that the number one thing I wanted to be in life was a great dad. And I could tell that, you know, she was, it was my mother’s mother. She she’s phenomenal mother. I knew she was going to be a tremendous mother for my kids. Um, and we ended up being, uh, better parents and we were, uh, spouse.

David Hirsch: Okay, well, thanks for sharing. I know it is a difficult topic and just appreciate your transparency and authenticity to be able to articulate your feelings. Travis, how about

Travis Jorgensen: yourself? Um, my marriage was, uh, eight and a half years long. We met and married about a year later and, um, been divorced like 14 years.

And similarly, my parents divorced when I was five. I thought, Hey, I’m going into this marriage. My parents are divorced. Her parents are still together. We have the best of all worlds. We know everything. Now we know what not to do what to do, and we can’t, we can’t go wrong. Right. And I think I was young when I got married young, mentally, and maybe made choices about.

What I wanted and what I thought I wanted it and what I really wanted and who I was. I didn’t know. And we, we grew apart. That was really tough. It was really tough to go. My parents divorced when my kids were five or, you know, when I was five and I don’t want to do that to my kids. And I know what it was like.

And, and then to get a divorce and carry that burden. Uh, I screwed up, right. I did what I didn’t want to do, and I made a mistake and, and now how do I make the best of it? And I think that kind of, um, weight created a lot of who I became as a divorced parent in making sure that I did what I could to provide for my kids, um, and for, and to provide for my apps.

Um, You get divorced, spousal support and stuff like that. I knew back then that, you know, uh, my ex was going through, you know, maybe changing her career and, uh, I wanted to help in that garage because I thought if she’s happy, my kids will be happy and, you know, and, uh, And at the end of the day, maybe it wasn’t the most financially sound decision or, you know, there’s lots of ways to look at it and go, what odor did this, or it could have done that.

But why my heart said my kids will have a better experience in life if she’s happy. And if I can promote were being happy in some way, by helping her get an education or helping her financially, you know, that’s probably. The money that I gave to her, um, you know, and it was expensive. And then the economy took a crap and, and I was paying her more money than I was making.

And so then I had nothing to live on and went into massive debt. It was a tough time, but you know, nothing is on handleable. And in the end, I mean, we had a couple of tough years after divorce, but, uh, we both committed.

We didn’t make it work.

David Hirsch: let’s switch gears and, um, talk about special needs. Uh, Chris, I’m sorta curious now, but for Lucas’ diagnosis, uh, did you or Leah have any experience? Uh, the special needs kids?

Chris Wade: Yeah, other than knowing a few people in, uh, in my church, when I was a kid, this was our first experience. Uh, two boys came along and recent Grayson, um, were completely typical.

And so Lou, when Luca came in, uh, onto the scene, um, she was our first experience with special needs and it was brand new, uh, uncharted territory for, for both.

David Hirsch: So the diagnosis is Wolf Hirshhorn syndrome. Uh, how did that come about? How has it transpired?

Chris Wade: Yeah, so the first indication that, uh, something was wrong came the day we went to go find out the sex of the baby.

And one of the first things that the, uh, the doctor said to us was, uh, I see something right. And we didn’t understand, you know, what she was saying at the time. Yeah. She spotted something, uh, in the formation of the S uh, Lucas skull. And, um, we found out that way that, you know, we should brace ourselves. So, you know, for, uh, we kept thinking that, you know, you know, something’s gonna turn around and, and, but every single ultrasound we went for.

Uh, still indicated that, you know, something was wrong and they didn’t know what she was born full term. Um, and, uh, when she was born, everybody knew something was going on. Um, uh, she came out and C-section, didn’t make a peep. And, uh, we found out seven days later that it was well first shorn syndrome by genetic test.

David Hirsch: Wow. It sounds like a pretty heavy thing to be going through two kids at home already. And this pregnancy with some known complications. So the diagnosis is made at seven days. And how did things transpire that? And if you can put yourself back into that situation, what was going through your minds? What type of concerns or fears did you have at that point in time?

Chris Wade: Well, we were, we were AB we were terrified, um, because. The diagnosis came, uh, you know, a week after she was born. But know, like I said, when she was born a C-section, you know, she came out, we had a friend in the room who wanted a Leah, wanted her to be, to be there. And Luca didn’t make a sound when she came out and she got whisked away and, uh, we all knew something was really wrong.

Um, but she was alive. That was the most important. And then yeah, and having the two kids, uh, two boys at home, knowing that, you know, you’ve got to get back and care for them. They had the mother-in-law, uh, Leah’s mom was in town for the birth as well. So just trying to juggle the kids and, you know, trying to keep them apprised of the situation without landed on too sick.

And then at one point. In the first 24 hours, Leah called me back. She says, uh, you got to get back to the hospital and come over here right now. They’re having trouble with Luca. And, uh, so, you know, being sleep deprived and, you know, terrified, drove back over to the hospital. And I walked in and she said that she’s been having problems because she hadn’t been able to nurse.

Uh, she just didn’t have that sucking sensation to nurse. Um, Which was devastating in itself because two boys had nursed until ages four or five years old. And so no sooner had I arrived back in the hospital room at Leah, then Luca underwent a grandma seizure. She sees right there in front of, um, one of the PICU specialists and three nurses.

She stopped breathing, turned blue. And personally I was kind of prepared for the end, uh, just especially having seen her come out, essentially a lifeless, you know, less than 24 hours earlier. Um, but they brought her back. Uh, they didn’t skip a beat. They stuck to their training, uh, resuscitated her, uh, again, this was, this was on day one.

And so we didn’t know what any, any sort of diagnosis was the furthest thing from our minds. Because of the grandma’s seizure, that’s when they initiated the genetic tests, um, to, to analyze the DNA. And, uh, six days later, that’s when we found out how

David Hirsch: long was she in the NICU?

Chris Wade: I want to say, um, three weeks, uh, 21, 23 days.

David Hirsch: Okay. So you get the diagnosis. Um, she’s in the hospital for a few weeks and then, um, she’s ready to go home. Was there some level of normalicy or was it just a totally different path than with the boys?

Chris Wade: Uh, it was, you know, the boys, uh, Luca was born and, you know, like I said, full term for four pounds and like an ounce maybe.

Um, and then to see her lose weight, just like every kid does was kind of devastating. We didn’t take her home until after she had put on a little bit more weight. And when we got her home, we, you know, we treated her, you know, like little. And the boys would come in and interact with her and kiss her and, you know, just be with her.

And it was bittersweet because they had their little sister at home, everything that she had gone through at birth. Um, and in the NICU that, uh, you know, the odds were kind of slim, but every so often we were just kind of given a glimmer of hope that there, there was going to be something for her and the boys are certainly a part of it.

David Hirsch: Well, is there some advice, some meaningful advice you got early on that helped you navigate? That sounds like a pretty challenging situation.

Chris Wade: I don’t know. I don’t, I can’t pinpoint a single piece of advice, but I think Leah’s maternal instincts were so strong that I simply listened to her and followed her.

I consider myself kind of a supporting actor. If you will. She was the director and Luca was the star of the show.

David Hirsch: That’s not too uncommon. Um, I’m not to focus on the negative, but just to be, I guess, realistic about it. What were the biggest challenges that first year, the last few years for that matter?

Chris Wade: Uh, yeah, they’re getting used to the, the, the bells and whistles that came along when Luca came home, she came on with a bunch of machinery is how I put it. We had to master an NG tube, which was inserted through or not. Down into her belly to get her nutrition. We were reliant on breast milk solely for nutrition.

And the only way to do that was through the tube. You had to rely essentially on a pump 24 7 to get that nutrition down and through our belly. And just trying to navigate that too through, uh, through the nasal cavity was our option. You know, sometimes a NOLA night, it would come out. You wouldn’t. And until you realized the bed sheets were soaked in breast milk, new parents don’t get enough sleep as it is.

And then when you have this little pump beeping out yet every hour or so that, uh, it makes it that much more difficult.

David Hirsch: Well, thanks for sharing. I’m sort of curious to know what impact, uh, has Lucas situation had on her older brothers, Reese and Grayson?

Chris Wade: Oh man, I don’t know. I think that, uh, I think they’re extremely welcome grow.

Well-grounded they’ve been fantastic. You know, it’s not easy, uh, being a sibling of a special needs kid and I I’m just thankful every day that they had each other to play with and run around with while we were attending a Wicker, you know, these guys. Yeah,

David Hirsch: well, that is a benefit that it’s not just one older sibling, but there’s the two of them and they’re all to the close in age so that they can, um, you know, be brothers, right.

And sorta do whatever brothers too. And, uh, I’m sort of curious to know what supporting organizations, um, have you relied on as a family for Luca’s benefit for that matter?

Chris Wade: Yeah. Uh, current, uh, Seattle air is just rife with organizations early on. We found out about Kindering and say, um, organizations supported by the county and the state, and they do a number of functions, you know, just with kids and special needs kids and associated with Kindering as a, the Washington state fathers in our work and the work that, uh, Louis Mendoza has been doing, heading up the organization currently.

And a fellow with a bunch of guys about three years back and got super acquainted with the world of special needs dads. And then from, nah, not, not necessarily they won, but as soon as Seattle children’s found out about Luca and, um, well ever evergreen, uh, here in Kirkland made the referral to Seattle.

Children’s. And, uh, the Seattle children’s hospitals been a tremendous organization. Um, and in fact, we were lucky enough to get a full ride, um, based on, um, economics, essentially. Um, and so couldn’t have done everything we’ve done, uh, without any of those organization.

David Hirsch: And, um, did you mention previously that there’s a Wolf Hirshhorn Pacific Northwest group, a group of parents that, uh, you are connected to as well or not?

Chris Wade: Yeah, that’s right. Um, we, uh, the currently during COVID, uh, nobody’s really meeting up and especially, uh, knowing that the, uh, the immuno deficiency challenge is a lot of these kids have, um, everybody’s fine. Staying at home. Um, but we did get to meet quite a number of families, um, here in the Pacific Northwest that also had, and, you know, older adult children, uh, with  syndrome.

And it’s really, it’s ironic. Uh, well, not ironic, I guess it’s just a, a product of timing. Uh, we found out. Uh, Luca’s diagnosis. We found out after seven days and we’ve met 20 year old in 30 years. Well, for short term patients that went two decades or more, and didn’t know what it was that they had, um, because they didn’t have a genetic test for it when they were born.

So we were really, really lucky, I think, to find out as early as.

David Hirsch: Yeah. Well, thanks for sharing. And the last group or organization that you made reference to previously. And I had not heard of this before. I think it’s more of an informal network as something along the lines of human milk for human babies.

What is that all about?

Chris Wade: Yeah, so what’s really, what’s really special is, um, human milk for human babies here in Seattle. It’s a really strong Facebook page. Of, uh, mothers with excess, uh, breast milk. You’ve got some, others are just factories for the stuff. You know, they just men make more than their kids or whatever need.

And when we found out about it, uh, we thought we were going to be lucky enough to get, you know, a month or two supply, uh, breast milk, um, because, um, you know, your, your kid really needs to nurse, uh, for that production to stay out well. Uh, Lucas mom, wasn’t able to keep up that production. And so we fell in at some point along the way with Facebook and this, uh, Facebook page.

And, um, you know, mom’s just logging in and say, Hey, I’ve got, I might have, uh, 50 ounces here. And another mom would say I got 20 ounces there. And so, uh, it’s been five and a half years now. And my baby girl has never gone a day without donated breast milk from, from other moms. So. It’s been, uh, one of the most important sort of life-giving sources because to this day, and it’s just kind of a Testament to how much importance other moms put on that breast milk.

And it’s just, uh, it’s reassuring to know that they make an available and freely available.

David Hirsch: Yeah. Well, thanks for sharing. Um, it does sound like it’s a life sustaining, uh, experience. Literally a life-sustaining experience. So Travis, I’m back to you. So I’m sort of curious to know when you met Leah, um, out of this sort of topic of having Adelaide children, but a child with special needs come up.

What was your first sort of awareness or realization of that?

Travis Jorgensen: Um, we met because I was doing some volunteer work, serving the homeless in Seattle. And a mutual friend of ours, uh, reached out to me because I was posting on Facebook about it. And she reached out to me and said, Hey, I have a couple friends that would like to join me and go out with you to do this volunteer work.

And I was like, great. And show up. That’s when I met Leah, we had no idea she was single or anything, but we just hit off and talked all night and had a good time and ended up having coffee the next day. No, I was single and she was a single mom and I guess I would be called a single to add and she, um, brought it up right away.

She’s like, I need to tell you that I have a daughter with special needs. And I was like, okay. You know, just, you know, my, my dad divorced and had three more kids. So he had a total of five. My younger sister has five kids. Um, yeah. There’s not a day that goes by that I don’t get the opportunity to brag about my five kids, you know, luckily because I’m with Leanne, her kids and my two that are almost grown and I just find it a blessing.

I mean, I, the fact is, is I love children and, and to be able to have them in my life is it just brings more to my life. Not less. It’s not a takeaway. No, I don’t lose anything because I have three more kids in my life. I gained so much more. So that’s my perspective, I guess.

David Hirsch: Yeah. Well, thanks for sharing. Um, I don’t know that that’s the typical reaction that most men would have when they learn that this woman that they become friendly with.

If I can sort of go back to the volunteer experience, you know, some guys are wired to be dads and. Enjoy being around kids more than just their own, that would fit your situation. And I know there’s a lot of dads that are like, Hey, you know, I’ve already got my own kids, paid my dues. No, I’m looking to be a little bit more, uh, flexible and less, uh, committed, I guess, is the word that comes to mind.

And, uh, you know, it seems like. To situation right. All around, um, for where you’re at in your own life and with your own way of looking at things.

Travis Jorgensen: When you’re talking about that, I think it’s perspective, right? Somebody chooses a perspective to have neither is right nor wrong, but the perspective of I’m free, I can do whatever I want.

I mean, I can do whatever I want. Now. I just choose to spend more of my time with my family and, and create the family experience. You know, I still do a lot of stuff on my own, but I also get to come home and sit down and have a warm dinner with my, with the kids and, and my girlfriend and, and my kids come over every Sunday night.

We have a big family meal, you know, and Chris and my ex Emma worked for exhibiting, I think Christmas dinners all together, you know, just as a big, crazy thing.

David Hirsch: It sounds like there might be some most grip material for some type of TV program, but that’s not my expertise. I’m just saying it’s very, um, noble.

That’s the. Word that comes to mind to be able to be that open-minded and inclusive. Right. Which I think again is what we all need more of and today’s day and age. But I’m wondering what, if any fears or concerns do you have about taking on this type of responsibility? Not just on a short term sort of intermediate term basis, but potentially.

On a long-term basis.

Travis Jorgensen: I can’t even tell you how many days I spent actually hospital or chasing an ambulance to children’s hospital, uh, or, or standing over this child, having a seizure with 30 nurses and doctors, um, and being scared out of my mind. You know, if you see that and you don’t have your heartstrings type that, and then, you know, it’s not, you’re not going to have to be a human.

I don’t think. It’s just a human experience. And with, with Luca, I look at her and she is the epitome of pure joy. Like she’s if, if she’s not in pain and she’s not having a seizure, she’s happy. Like she wakes up happy. She goes to bed happy. She giggles all the time. She is, you know, she’s she taught me more about.

Letting it roll off your back and being happy than probably anybody else. You know, she could have this traumatic experience be in the hospital, laying in her bed and then just start giggling because she’s happy. And that says a lot, you know, I mean, and somebody could dissect it any way you want to, but I look at it as how it affects me and, you know, I, I can’t imagine being anywhere else.

And before COVID hit, you know, we’d go to the hostel. Chris would be there and Lee and I would be there. And, you know, I remember one night it was Lee and I sleeping on that couch bed kind of thing. That’s the most uncomfortable thing in the hospital. And Chris was sleeping in the chair and we’re all there just to take care of it.

David Hirsch: Yeah. Well, thanks for sharing. Um, it’s more apparent to me now. Having listened to both of you that, uh, Luca is really the beneficiary here. You know, she might be growing up in a divorce, uh, household right now. That’s, you know, one way to look at it. But what I realize, uh, it’s very clear, crystal clear to me is that she has these two amazing men.

The both of you who are there for her. Right. And. It might not be traditional, right? The nuclear family type of traditional, but the net result is that, uh, you know, she’s not got just one dad, but you know, two dads are father figures in her life. And I think that that’s a very powerful and, um, you know, uh, I just want to say thank you again for sharing.

Um, each of your perspectives it’s. So I’m sort of curious now under the banner of advice, if, uh, there’s a piece of advice that you can share with a dad? No, maybe a dad like yourself, who’s divorced. Who has kids special needs or otherwise, uh, advice that you you’d like to share maybe beyond what you’ve already mentioned, uh, to help that dad who might be struggling.

Well with this situation and Chris, I’ll let you go. First.

Chris Wade: One of the other things that I’d like to reiterate with Luca, um, you know, being well first Warren syndrome, being of all things, a seizure disorder, um, was that, uh, her mom and I had to look doctors in the face and tell them that they were wrong.

You know, when you have that little voice inside, um, you have to listen to. And for us, uh, we simply, um, had to, and, um, what I’m getting at is, uh, with regards to Luca said, um, you know, from the day she was born with a grandma seizure until about five months of age, uh, she was reliant on phenobarbital to control her seizures.

And Leah and I both knew that Despina Barbara was just not going to be the answer for her because, um, she had, it was robbing Luka of her, um, of her personality. And so we started looking for alternatives and, um, you know, this was five years ago today it’s much more prominent, but back then, it was just kind of starting out as a whole idea of medical marijuana.

Um, specifically, uh, CBD oil. And so we fell in, um, and started doing some research and, uh, we eventually came to the conclusion that we needed to get Luca on that CBD oil and we needed to do a fast. And so we started exploring that alternative, uh, through, uh, a circle of families, uh, uh, with Jurvay syndrome kids.

And we started seeking them out. And, uh, there’s a pretty tight knit group up here of true of survey families. And they told us about their experience with, uh, CBD oil. And that’s what set us on the path, uh, getting woke up, um, her CBD oil. I know it’s a big tangent or kind of a story, but, um, you know, sometimes the doctors are wrong and the parents just really need to listen to themselves.

And I think that, uh, above and beyond anything else, that’s, that’s what I would say. Um, listen to your gut, listen to your heart and trust your instincts. Um, when it came to the CBD oil CBD oil, um, you know, my daughter has been on it since the sixth, six months of age. And, uh, we pay for that out of pocket.

Um, insurance obviously is not going to cover anything like that, but I think it was one of the largest, uh, biggest life changing. For her.

David Hirsch: Yeah. Well, thanks for sharing Chris. So I’m back to you, Travis. I’m wondering if there’s any advice that you can share, uh, with that dad who might be listening, who’s struggling because he finds himself in a, you know, um, noncustodial situation.

Travis Jorgensen: You know, I thought about this interview coming up and in my, this morning when I woke up at four 30, because Luca was crying in her bed. And ready to get up, which happens a lot, um, about the benefit of being with a child with special needs. And, um, and, and being in this, uh, you know, co-parenting relationship with Chris and with Leah, um, blending our families and, and contributing to the overall wellbeing of a special needs child.

You know, you have to look at it like the plus, right? I mean, if you had a child, if your child goes to school and has one teacher versus your child goes to school and has seven and you know, which one’s going to be a bigger benefit. I think that me and coming into the situation is just a plus for Lou and, and sometimes a plus for Chris and plus for Leah as well, because I, I want him to be the best dad.

He can be with his kids and I want to be the best. You know, parental role to his children as well, because at some point they’re my children. I, you know, and they’re not my biological children, but when they’re with me, uh, I want to give them, you know, as much love as I can and, and support them as well.

You know, the cutest kid, Chris and I drove her to school one day, uh, when she first got her wheelchair and we get her all buckled in and, you know, lo and behold work, chit chatting and. You know, she’s had some paralysis on one side, one handed wheels herself across the crosswalk, right over to her teachers as a loss, you know, and both of us kind of looked at each other and laughed.

And it’s like, you know what, a blessing that we get to, uh, to witness

this, you know, it’s, it’s interesting. I’m so glad Travis told that story because I remember, you know, Being thrilled that, uh, the kindergartners, uh, special needs here at lake Washington school district here in Kirklin were, uh, being allowed to attend school and, um, uh, to give her mom a break, every special needs, parents needs a break at some point.

And, uh, you know, we had been told that. And, or we just kind of knew that Luke is going to have all these challenges, but to see her that one day we will add a wheelchair on her own across the parking lot was, you know, kind of an eye opener, uh, for me, um, I know it was for Travis as well to never count these kids out, um, and, and never discount their abilities because they will surprise you and they’ll do it when you least expect.

David Hirsch: Yeah. Well, thank you for sharing Chris and Travis. Thank you for your time. In many insights, as a reminder, Chris and Travis are just two of the dead to a part of the special fathers network mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or I was taking advice from a mentor father with a similar situation to your own, please go to 21st century dads.org.

Thank you for listening to the latest episode of the special father’s network, dad to dad podcast. I hope you enjoyed the conversation as much as I did, as you probably know, the 20% of your dad’s foundation is a 5 0 1 C3 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 deductable controbution I would really appreciate your support, Chris and Travis. Thanks again. Thank you,

Tom Couch:  

And thank you for listening to the dad to dad podcast presented by the special fathers network. The special father’s network is a dad to dad mentoring program for fathers raising children with special needs.

Through our personalized matching process. New fathers would special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers go to 21st century dads.org. And

David Hirsch: if you’re a dad looking for help or would like to have it. 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 father’s network. Bi-week the 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 no of a compelling story, please send an email to David at 21st century dads.

Tom Couch: The dad to dad podcast was produced by couch audio for the special father’s 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