367 – Sebastien Pelletier of Montreal, Father of 4, 3 with Retinitis Pigmentosa & Featured In the NatGeo Documentary BLINK

Transcript:

Tom Couch: 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.

Sebastien Pelletier: You know, as we said after through all the process of grief, I think one thing is to try to see the beauty in the world. Try to focus on the positive. And I think that’s one thing that helps us is yes, there are challenges and yes there’s things that are difficult to accept. But the more you see the bright side of it, the more that you see the glass half full, the easier it’s going to be to move forward and to find solutions.

Tom Couch: That’s our guest this week, Sebastien Pelletier, a financial professional who lives in Montreal, Canada. Sebastien and his wife, Edith Lemay, are parents to four children, three of whom are legally blind. They’re also the stars of a National Geographic documentary entitled BLINK, showcasing the world travels of Sebastien’s family. We’ll hear all about that and more 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, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. Two short messages. First, I’d like to invite you to attend the 6th Annual SFN Dads Virtual Conference taking place via Zoom on Saturday, May 10th at 8am Central Time. We have a great roster of speakers and there will be plenty of time for breakouts to meet like-minded dads who are committed to their children and self-improvement. Secondly, the Special Fathers Network Mastermind Group Experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending an in-person weekend retreat scheduled this year from September 5th to the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind Groups and join a group of like-minded dads to become the best version of yourself. It might just transform your life like it’s done for so many others. For more information please go to the Show Notes or Simply go to 21stCenturydads.Org.

Tom Couch: Now let’s listen in to this conversation between special father Sebastien Pelletier and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Sebastien Pelletier of Montreal Canada, who’s a finance professional. Father of four young children, including three who were diagnosed with retinitis pigmentosa. The Pelletier family was also featured in the 2024 National Geographic documentary entitled BLINK, chronicling their 18 month journey to visit 15 countries. Sebastien, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Sebastien Pelletier: It’s a pleasure.

David Hirsch: You and your wife, Edith Lame, have been married for 14 years and are the proud parents of four children, Mia, 13, Leo, 11, Colin, 9, and Laurent, 7. Mia, Colin and Laurent have been diagnosed with retinitis pigmentosa, a rare genetic disorder called inherited retinal dystrophia that causes loss of vision. Let’s start with some background. Where did you grow up? Tell me something about your family.

Sebastien Pelletier: So I grew up, near Montreal. I’m the eldest of three boys. So, you know, we lived in somewhat of a chaos. We were not more than five years apart altogether. You know, grew up in a suburb, family. my father is a physician and he had conferences around the world with my mom. And he brought us all three boys, on our trip. You know, that was an initiation to traveling, around the world, which has followed me ever since. Discovering different cultures, discovering a lot of things, and really, just opening my eyes to everything I know today.

David Hirsch: Yeah, well, thanks for mentioning that. You grew up with two other brothers and no doubt that’s informed you as far as being a father of three young boys yourself as well as a daughter. Yeah, I think in a prior conversation you mentioned your dad was a rheumatologist.

Sebastien Pelletier: Correct.

David Hirsch: Sound like he was well respected in the medical community if he was traveling and speaking at different conferences.

Sebastien Pelletier: Yes, very much. You know, him and my mom have worked on osteoarthritis, almost all their life, or at least all their working life. And they’ve conference around the world and got some prizes on discoveries they’ve made. So you know, it’s really role models to look up to. I’ve been very fortunate they’re still together today, you know, so for me it’s always been something I’ve been able to look up to, like everything like myself. We all have flaws. I was fortunate to be in the family I was in. And

00:05:00

Sebastien Pelletier: today we’re still, close to, each other and it’s been a blessing.

David Hirsch: That’s wonderful. So I’m sort of curious now. How would you describe your relationship with your dad?

Sebastien Pelletier: I think my dad is, the most well intentioned person. He’s still somebody of his, generation where doesn’t talk much, but acts a lot, if I can put it that way. I’m a little different today, but anytime I need him, he’s been there. He’s been always supportive, not very vocal, but always behind anything I’ve done. Rarely putting in question anything. The choices I’ve made. None of us boys are in the medical field, so that feels a little weird for our two parents that are doing medical, school medical research. But, you know, like, the teenager were a little, little tougher. But after that it came back, and him and my mom have been very supportive for my family and everything, we’ve had. And we see each other, periodically, and then they’re so happy to see the grandchildren and everything. So it’s, no. Very happy that, everything turns out well and that, we can be all together.

David Hirsch: You mentioned that your dad doesn’t talk a lot, but his actions speak loudly.

Sebastien Pelletier: Yep.

David Hirsch: And, that brings back this very fond memory that I have, when I eulogized my maternal grandfather at age 93 when he passed away. There’s a quote, and I probably won’t get it exact, but it’s by Ralph Waldo Emerson, which is, your actions speak so loud I can’t hear what you’re saying.

Sebastien Pelletier: Exactly.

David Hirsch: And that’s sort of the thought that came to mind when you were describing your dad. Not a man of a lot of words, but, you know, if you were just to pay attention to what he does, you know, you want to be more like those people.

Sebastien Pelletier: Oh, no, exactly. It’s, you know, if you have a problem, he’s going to go around the world to make it happen. There’s no barriers that are tall enough that he can’t get through to, make it happen. So it talks about the individual, who he is, and, you know, it is for me, but it is also for all the patients he has. So I’d like to have him as a doctor if I ever need one.

David Hirsch: If you ever need one. That’s a good point.

Sebastien Pelletier: Yeah, exactly.

David Hirsch: So I’m thinking about lessons learned, things that you might have taken, away from your relationship with your dad.

Sebastien Pelletier: And what comes to mind, lessons learned, is that never take no as an answer. The way that they’ve evolved in their field is that if they’ve always, you know, when their little way, when somebody said, you can’t do this, they would have never achieved what they did. And this has been something I followed through, is that if you put your mind to it and if you Surround yourself with the right people. You know, things can happen.

David Hirsch: Yeah. Well, the thought that comes to mind is perseverance. Right. Not giving up, perseverance.

Sebastien Pelletier: And I think passion also. If you believe in something, go after it. It’s something that’s. You always say it, but to see it and be able to put it in action is two different things. It’s been a good thing for me to be able to have this, model to look up to.

David Hirsch: Fabulous. So I’m thinking about other father influencers, and I’m wondering what, if any, influence your grandfathers had first, starting on your dad’s side.

Sebastien Pelletier: On my dad’s side, unfortunately, the whole time I knew him, he had an injury where, he fell from a roof of a house he was building himself. So he was a hockey fan, and I’ve been a hockey fan ever since.

David Hirsch: A Canadian who’s a hockey fan. Oh, I’ve never heard that before.

Sebastien Pelletier: Exactly. And, so that’s probably my strongest, memory from that man is that every time we went on Sundays, he was watching hockey, games. And, we sat down with him and we, we watched a hockey game. So, you know, he died when I was pretty young, but, that’s the memories I have. And he was a man that worked with his hands, and he built his own house. So the house my father grew up in, he was, It’s his father that had built it.

David Hirsch: So was he a Montreal Canadiens fan?

Sebastien Pelletier: Oh, for sure.

David Hirsch: Or just a hockey fan? In total, I don’t know.

Sebastien Pelletier: Montreal Canadiens.

David Hirsch: Okay, well, this is probably for another conversation, but all of our kids skated.

Sebastien Pelletier: Okay.

David Hirsch: Four of our kids, including two of our girls, played hockey, one of them through high school. So, we’ve spent so much time in hockey rinks. I can not appreciate what you’re saying as a Canadian hockey fan, but I can. I can at least relate.

Sebastien Pelletier: Hey, Chicago Blackhawks, you know, they’ve had their time.

David Hirsch: Yeah, we’ve had some good years. So how about your maternal, grandfather? Any influence there?

Sebastien Pelletier: Yeah, my. My maternal grandfather, he was a corporate man until, later in his career, where he switched as a real estate agent. Once again, a man of his time. He was a strong figure where there’s things that he wouldn’t do because it wasn’t his role to do, or at least that’s the perception at the time. But he was very serious at time. But also, as he grew older, he was somebody that was very personable and laughed with the grandkids, which was us. And it was good to see that evolve or relax because he thought of this very straight figure. But as he grew older, you know, grew closer to us and, you know, that, that made us, you know, appreciate the man more, at least as a kid. All you want to do is have fun and play with your grandparents. So, he passed away in my mid teens, so once again had

00:10:00

Sebastien Pelletier: some time with him, but not all that much.

David Hirsch: Yeah, well, you’re fortunate to know both of your grandfathers and perhaps your grandmothers. It’s a blessing that they might live long enough that you get to know them not just as a little guy growing up, but maybe as a young adult as well.

Sebastien Pelletier: Yep.

David Hirsch: I’m wondering if there’s any other men who’ve played a father figure role, either as you were growing up or perhaps as a young adult.

Sebastien Pelletier: Well, in the beginning of my career when I was asking myself a lot of questions, I was working in startups and venture capital, and I had this guy that was working for an overseas firm and decided to take me under his wing and really teach me and just bring me around wherever my age didn’t matter. It was really that he wanted to, show me the world and how things were done, on a corporate level. And for me, starting my career really made a difference where I was exposed to things I never thought I would be able to, at least at this age.

David Hirsch: And who was that, and is he still alive?

Sebastien Pelletier: He’s still alive. His name was Laurent, and, no relation to my son. But, you know, he’s somebody that, at least through the first half of my career was really somebody I related to and really, went to when I had any questions, even when I wasn’t working with him anymore.

David Hirsch: That’s fabulous. I think of people like that. Laurent are the, angels in our lives. Sometimes you realize it at the time, but oftentimes you don’t realize it until you can look back.

Sebastien Pelletier: You don’t appreciate it as much when you’re in it. and that’s the thing you realize afterwards. You’re like, it’s people like this that really makes a difference and actually make who you are today.

David Hirsch: Absolutely. So my recollection was that, you, have an accounting degree, you went to McGill University, you have an MBA in finance. you spent, most of your career either in accounting or finance with companies like A and Y, Scotiabank, Logi- D, SPI Health, and, I’m wondering what it is that you’re doing today?

Sebastien Pelletier: Today I’m, I’m doing I’m starting a venture capital fund. So it’s, it’s a little going to my, my first years which were in venture capital, but since then worked in investing, investment banking, but also worked for the past 14 years in startups. And one thing that it’s almost you know, paying for it is the sense that I believe so much in what these people are doing because they’re building our next generation and they’re building up the country. So startups is something that you need to really help build up and counsel and having been there and done that really I think I bring another perspective. So it’s something fundamental and I think that I’ve done both sides and now I can really help these entrepreneur. And I’ve always said I’m never going to be an entrepreneur but I’m going to be the best right hand and that’s what I did in terms of finance. So get the idea and I’ll make sure I tell you everything that can go wrong and then you can decide to go and I’ll still help you.

David Hirsch: Well, it sounds like you’re going to be mentoring a lot of startup type of operations. And is the name of the company Ripple Crust? Is that what it is?

Sebastien Pelletier: Correct. Yep.

David Hirsch: And is this your own pile of cash or is this something that you have a lot of friends, and family who you know, have funds, to invest?

Sebastien Pelletier: It’s a mix of a lot of things. As usual. You need to put your own money in, convince other people. We have institutional investors that are looking into it and we have also high net worths and individuals that me and my partners have helped, you know, either work with or help make that much money. So you know, a lot of time, especially when you start, you have to go with people who believe in you and that you have help at the time. So you know, they give back to people they believe in. It’s the same thing as when you do a startup, you have to believe in the people that are doing it. So it’s, it’s really a human factor. It’s not about so much the technology and everything, it’s really about the people.

David Hirsch: Yeah, well I would agree. After 40 years as a professional investment advisor, you know, you’re really investing in people because those are going to be the individuals that are going to drive the strategy and implement the technology. And you know, there’s just so much more to it. So thanks for corroborating that for sure. So you and Edith have been married for 14 years. And I’m sort of curious to know, how did you meet?

Sebastien Pelletier: We actually met on Internet when it wasn’t so popular. So it was kind of a dating app for people who like sports and like-minded people who, like, to go outside and everything. So we met on there. And what’s really funny is that we actually knew each other from university. So we went to the same university, knew the same people, were one year apart, but actually never talked to each other. We probably had seen each other, but never had talked, talk. So once we realized that, the conversation was pretty easy.

David Hirsch: That’s fabulous. Well, let’s switch gears and talk, about special needs first, on a personal level, and then perhaps beyond. And I’m sort of curious now. Prior to Mia’s

00:15:00

diagnosis, did you or Edith have any connection to the world of disability or special needs?

Sebastien Pelletier: Not at all. Nope. It’s not something that either from our family or close to our family had happened before.

David Hirsch: Well, Mia is your oldest, and I’m sort of curious now. How did her diagnosis come about?

Sebastien Pelletier: It was actually a very long process. So as it was her first child, she couldn’t see in the dark. But we didn’t quite know at first because she was banging into walls and, you know, when she was in the dark, she couldn’t grab anything. So we kind of question, you know, is she just sleepwalking or what is it? So at some point, I think when she was three or four, we went to see an optometrist, and he said, you know, it’s probably night, blindness. Okay, what does that mean? Well, he said, you know, you have different choices where it’s just a stationary night blindness, where you only don’t see in the dark, but there’s nothing else. Or there’s the bigger one where you have retinitis pigmentosa and you actually, you gradually lose your vision. So we went to, an ophthalmologist, and that person couldn’t actually make a diagnostic. So we had to go to genetics and the genetic testing or to get a result, took two years. So actually, until we only got a diagnostic, final diagnostic, when Mia was seven. It took almost four years from the time we suspected till we got the actual answer what was actually behind her disease.

David Hirsch: Oh, wow. So it’s a hereditary disease. is that what informed you to have the other kids tested as well then?

Sebastien Pelletier: Yes, because it’s two genes. We each have a different mutation that together gave a chance out of four to have the disease that they have. So, obviously, when we got the diagnostic for Mia, we already had the two other ones. Laurent was six months old, but obviously we were much more aware, and we kind of tested them in the dark and everything, and we were pretty convinced that Colin and Laura had it. But to get the final conference team, we did need to get the test, but we were pretty much certain, even though we couldn’t quite put our minds around it.

David Hirsch: So once you got the diagnosis and there was, like, this lead up this Runway that you’d indicated was three or four years on Mia’s behalf, what were some of the fears that, you and Edith had as relatively young parents with all these young children?

Sebastien Pelletier: It’s tough to say because I guess we kind of pushed it back in, you know, from the back of our minds and kind of hoping for the best until we actually got it. So I guess the biggest reaction was actually when we got the diagnostic. And, you know, it wasn’t just one. It was most probably three. And, you know, less than six months later, it was, it was definitely the three of them. So I guess we kind of mentally tried not to think too much about it until we got the actual diagnostic, and then we. Not saying that we crashed, but it was really a big toll, and we had to go through the whole process of not believing into it and then being mad and then kind of sad and really tried to accept it and then start grieving, etc. So it’s something that evolved for the next two years after we got the diagnostic really.

David Hirsch: Well, what you were describing is sort of like the various stages of grief.

Sebastien Pelletier: Oh, yeah, definitely.

David Hirsch: There’s the denial, then there’s the anger, there’s the sadness. And then, you know, if you get there, not everybody does the acceptance, right, that, hey, it is what it is, right? This isn’t something we asked for.

Sebastien Pelletier: Well, I guess what helped us is once you do get to the acceptance, you can move forward and try to find solutions, because until then, you’re kind of in the paralysis, where you’re kind of so caught up in your emotions that you can’t look forward.

David Hirsch: Did you get m some meaningful advice that helped you put things in perspective?

Sebastien Pelletier: We did. And I must admit that most of it, Eden went after I was more like what you’d consider a normal man and not looking too much into it. But also we do, a lot of share, tasks, so we don’t do the same thing because it’s much more efficient that way. So Edith was not, at first, not directly from the doctor. But she did some research and was able to find some organizations that really put in contact parents that had the same, or, not exactly the same, blindness disease, but blinding diseases. And she was put in contact with parents that had gone through that. And for us, that was really helpful because it kind of gave us a sense of community and that we’re not alone into it and that we could ask anything that, you know, we thought they already had went through. So that, that was really something that made a difference for us. And we think without that, we don’t even know how we could think about it today.

David Hirsch: Yeah, well, it’s not uncommon for husband and wife, man and woman, to, approach things

00:20:00

David Hirsch: differently. And what I think I heard you saying is that, you took a divide and conquer strategy.

Sebastien Pelletier: Yep.

David Hirsch: Edith did certain things, you did certain things, which is a practical approach for most couples. And that, I can’t speak for Canadian men, but I can speak for all men, in the U.S. that, we are, we’re going to try to figure things out ourselves.

Sebastien Pelletier: Yeah.

David Hirsch: We’re not going to pull over and ask for directions when we’re lost. So I don’t know if it works that way in Canada, but that’s the way it works here in the United States.

Sebastien Pelletier: I think it does for all men or most men across the world. I think one, thing as a couple that we did or still do, is communicate a lot. And that really, I think, helped us to get through, is that anything she did on her side, she could share. And that really helped me, so I could actually get it without asking for it, if I can put it that way. So there’s things that we did, you know, grieve on our side. But I guess talking about it and going through and looking at what she did and the process I did, really helped each other and helped us to go through together as a couple and as parents.

David Hirsch: Yeah, well, communication is the key to most relationships, whether they’re personal relationships, business relationships or otherwise. So it’s good to hear. So not to focus on the negative, but, what have been some of the biggest challenges that you’ve encountered related to the retinitis pigmentosa?

Sebastien Pelletier: Well, the biggest challenge, I guess it’s more as a parent to really think. And kids don’t do that, but parents do too much is think, oh, what is my kid gonna miss? Is really thinking about all the negative and thinking that, you know, my children have a disease, and it’s not the right word, but they’re kind of lesser humans. And, you know, once you’ve gone through this and then you really think about it, you say to yourself, it’s really not the right approach because they’re not lesser human. They’re better in different things, and they’re going to do their own way and it’s going to be different, and they’re going to live challenges. Anybody can live depression. Anybody can have different things in their lives. Anybody can have challenges with our not necessary physical impairments. So are there lesser human? The answer is no. So, you know, they have this thing. It’s going to be tough, and we’re going to be there to help them. But for them, it’s going to be their own path, and it’s up to them to make it their own.

David Hirsch: Yeah, well, I think it’s really, informative to hear you say that they’re not lesser than. Right. That they just have different challenges and they’ll have to come up with different solutions to overcome those challenges. And that’s just life.

Sebastien Pelletier: Exactly.

David Hirsch: You know, no doubt there’ll be some difficult times, some dark days, no pun intended, that, you know, you just have to work through. We all have to work through. And, they’re very fortunate to have you as their parents. And their grandparents are still, you know, alive and, you know, supportive as well. So, the odds are stacked in their favor, even though the challenges are identifiable.

Sebastien Pelletier: Well, that’s what we’re trying to do as today, there’s no actual medical solution, so we’re trying to give them the best tool that we can to help them. And, yeah, definitely, they’re going to do their own way and it’s not life threatening. And there’s other kids that have leukemia and other things that can be life threatening. So if that’s the only thing that happens, well, it’s probably okay.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in 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 Leo, your marriage, and your extended family. And I’m wondering what impact this retinitis pigmentosa has had on Leo, your marriage and your extended family. I asked that because Leo’s not the one with RP.

Sebastien Pelletier: No, no. Yes. And it’s a. It’s a question we. We get asked a lot, and Leo get asked, and I’ll put it that way, it’s a very adult question, because you ask your children, and they don’t look so much into the future. They don’t look that. And that’s one thing, and we can come back to it, is that they’re very in the present moment, and what can I do now? And the thing is, they’re my brothers and sister. If they need help, I’ll be there. If they need help tomorrow or today or we’re in the dark, we have flashlights, I’ll help them. But otherwise, they’re just brothers and sisters and they’re doing their own life. And we’re having, Yes, we’re having fun together. Other times we’re fighting. One way we can see it is that it brought us closer as a family.

00:25:00

Sebastien Pelletier: You know, there’s this project, but also the project brought the bond that we developed, and we kind of get all around this problem and address it together. And I would extend that to also the extended family, where my parents and Edith’s parents and my brothers and Edith’s brothers and sisters, they’ve been so supportive, and anything we need, they’ve been there. You know, maybe they would have still been there otherwise, but, you know, it’s been only, in a sense, positive, the response we’ve had from everybody around us, friends also.

David Hirsch: Yeah. Well, you’re very fortunate, to have a loving and involved family.

Sebastien Pelletier: I agree.

David Hirsch: A lot of, individuals who find themselves in the world of disability don’t have family members that are close by or don’t have living family members. And you’re sort of, like, shouldering this a lot on your own, and you feel a little bit more of the weight of it. And, you know, I think that, we were talking about the divide and conquer strategy. And that other image that comes to mind is that it takes a village. Right. And the village could be your family. And then, you know, the community that you’re. You find yourself living in as well, so. Very reassuring. Very reassuring.

Sebastien Pelletier: Yep.

David Hirsch: So I’m thinking about supporting organizations. I’m wondering what organizations come to mind that, your family has benefited from or the kids with RP have benefited from.

Sebastien Pelletier: Yeah. The organization I was talking to that referred other people with blindness is called AQPA. It’s a Quebec organization that put parents of visually impaired children together with newly diagnosed parents or children’s parents. So that’s one, Mira. The guide dogs that we went to visit explained us the whole process. They let us play with the dogs and really test it. It’s something we were a little apprehensive, but the kids took it as a game. They took it as more of a learning experience than anything else. So hopefully they won’t need it, but they probably will. So it’s just something that they were able to absorb in a fun way. So that was really a good experience. And fightingblindness.org in the US and Canada’s Fighting Blindness are two organizations that support research and also have so many referrals or resources that can help people with blinding disease. So it’s so important to support these organizations because that’s the future. They’re the ones that, without saying the only ones, they’re the main ones that support the research that’s going out there. And you know, we’re crossing our fingers. We don’t know if it’s going to happen, but we keep our hopes up.

David Hirsch: Yeah. Well, I’ll be sure to include information in the show notes about each of these organizations so that for those that are curious, it’ll be easy for them to follow up for sure. So let’s switch gears and talk about this National Geographic documentary BLINK, which was released in October of 24, which captures your family’s sort of 20, 23, 2024, my words. Epic trip around the world.

Sebastien Pelletier: Our kids were pretty young when we learned three out of four have retina pigmentosa. For some people, their field of vision is going to go completely dark.

David Hirsch: I am thinking there’s no treatment.

Sebastien Pelletier: There’s nothing they can do about it. It’s just too much. You’re powerless. Traveling is always something that had been on her mind. So we said, let’s do it now. Let’s go all in and fill their visual memory with as much beautiful thing as we can.

David Hirsch: How many countries did your family visit and over what period of time was it?

Sebastien Pelletier: In a span of 18 months we did 15 countries around the world.

David Hirsch: And were you on the road for 18 months in a row or did you go away, come home, go away, come home. How did it work?

Sebastien Pelletier: We came back for two and a half months to get my eldest daughter to finish primary school and then we went back on the road. So it was more a question of getting, the diploma and being able to go back. So we had planned for a year and we liked it so much that once, school was done. We left again for a few months to complete our trip.

David Hirsch: Yeah, well, it’s a very audacious thing that you and Edith, did with these four young children of yours. Many people would say enviable, right, that you had the ability to just take off for months at a time, if not a year or more, and to visit some of the most exotic places in the world, like bucket list items for most people. My understanding was that the Nat Geo crew was with you, for the better part of 70 or 80 days in total during your travels.

Sebastien Pelletier: Yeah. You know, to start with your statement, we feel very privileged to have been able to do it. and we’re fortunate that we are from Canada and we have a free healthcare system, free education system that permits us to have these, these costs less and be able to save up some, some money to do it. But we’re really happy to have been able to do it and offer this to our kids and the Nat Geo team. And

00:30:00

Sebastien Pelletier: you know, it even started much less than that in the sense that we left, we got approached by a California company that said, we’d like to do a documentary on your family or your trip. And we said, sure, why not? You know, a documentary is something that people see in a basement or in a, you know, in a small cinema. So it’s not a big thing. It’s, it’s going to be nice souvenirs and it’s going to be a good thing that we’re going to keep for our children. So, you know, we started getting film, but then NATGEO came in afterwards where they bought the rights and it became a whole big thing afterwards. So, you know, it looks big now, but it wasn’t, it didn’t start like this, just to put it in context. But the team did come five times, you know, something like two or three weeks at the time. And yes, the total filming was 70 some days all through our trip and when we came back, so, it was quite an experience. Unfortunately, they weren’t there for the whole trip. So when they came it was more of, having other adults to talk to, having people to play with for the kids. So it was a nice distraction from our trip. I don’t know what it would have been if they’d been there the whole time.

David Hirsch: Yeah, well, it sounds like an extraordinary experience. And having watched the documentary, I know that not every location that you visited, you know, made it to the final edited documentary film, but it was pretty amazing right from continent to continent and seeing some of the Sites, that, you know, we’ve, visited as well, whether it’s the pyramids or Angkor Wat. And, it, brought back some amazing memories. And, you know, it’s not lost on me that you and Edith, decided to not just, try to create, you know, visual images for your kids to see, like in books and movies and things that, you know, would be readily available to anybody. But you felt compelled to have them develop these experiences, firsthand experiences. And, you know, I’m sort of curious. Know, where did. Where did the idea. Where did the nucleus for that come from?

Sebastien Pelletier: The original idea came from somebody at school. We wanted Mia to learn braille or we thought it would be a good idea. And there was two things that we, were told by the specialist at school is that Mia sees too well during the day to learn braille. You need to be really impaired to really be able to learn Braille. So that might not be the way to go forward. And the best thing that we could do was to fill their visual memory. And that’s where the, you know, she said, you can look in books and see safari animals and things like that. And when Ida came back, you know, we looked at it. She taught. She told me that. And we looked at each other, and we’re like, we’re not just going to show them in book. We have to go see it in. In real life. And, you know, from that idea to go see safari animals, we put, you know, additional things. Let’s go, you know, see the incredible sights and everything. So we. We had so many things that we wanted to show our kids, filled, their visual memory that we said, well, we have to leave for a year. That was the original goal. And I guess we kind of knew from our traveling days. But the essence of a trip is not just a visual. It’s really the experiences. And without having this as a primary goal, we actually switched to it in the sense that really, that’s what the essence of traveling is about, is to meeting people, discovering new cultures, really opening up to the world, building resilience. So all these things, you know, we kind of realize, and when we looked afterward, we say, that’s really what is even more important than the actual visual memories, is everything else that they were able to experience and live, through. You know, I think the biggest lesson we got is from our kids who said, hey, parents, you need to be in the present moment. That’s what’s most beautiful. That’s what it’s all about. Stop trying to plan Too much ahead. It’s here and now. You know, a small beetle in the desert is probably more important than the biggest sand dune in the world where you go there and you just have sand in your face. And okay, we’ve been there, done that, but actually the beetle is more important. So let’s just stay here and appreciate it while they’re there.

David Hirsch: Yeah, well, very important insight about the importance of being present. You know, as adults, sometimes we get caught up with, things in the past, right. Even though we can’t change the past. And, we worry about things, right? And if you have some, you know, challenges that, you know, that you’re going to be facing, it’s hard not to think or anticipate, you know, how you’re going to deal with those or how you’re going to meet those challenges. And, you know, it. Sometimes out of the mouth of babes comes, you know, the truth, which is, hey, anytime that you spend in the past or in the future, any extended period of time, I should say you spend in the past or the future, you know, robs you of, you know, what’s going on right there and now being in the present. So very, very insightful. Thank you. So my understanding was the, trip started with sort of a bucket list of sorts, right?

00:35:00

Each of you had some ideas of things that you wanted to do. And, I remember seeing at least part of this list that, Mia wanted to swim with dolphins and Edith wanted to go in a hot air balloon, and Colin, wanted to sleep on a train and Leah wanted to see the elephants and you, wanted to go hiking, et cetera. And, was that actually legitimate or was that just something that, you know, you guys sort of put together on the fly?

Sebastien Pelletier: Well, actually, it was a combination of both. And the way it started is that when we start to talk, to the kids about the trip is that we ask, which countries do you want to see? And obviously small children, they have no clue about countries per se. So we kind of switch gears and say, well, if you want to do anything around the world, what would you like to do? And that’s where we started putting together. You know, there was surf, there was, as you said, you know, the obvious, eating ice cream for sure, and all these different things. And there, there’s small at the time, four year old that said, I want to drink juice on a camel. And we’re like, what? But it said, okay, why not? So we put it on the list and it became actually kind of a funny thing. Where as we were getting to these places, we said, everybody got excited. Let’s do this thing, let’s do the other thing. So I said it started more as a, funny thing to do. And it became something really kind of serious. When we knew we were going on a camel, all the kids were like, oh, did you get to juice for Laurent? Did you get the juice? Make sure you have it. So it became really something that we looked forward to. And obviously, as we ticked off some things, other things got added. For sure, we weren’t able to do everything. Leo wanted to see Pokemons in Japan. Japan was closed at the time, so we didn’t actually get to get there. And I don’t know how we could have shown him Pokemons in there, other than in museums or other things. But anyway, so it’s been an evolving thing. And obviously the more you travel, the more things you want to do and see. So, yeah, it turned out to be something really, that got us together and that we look forward to.

David Hirsch: Yeah. Well, my recollection was the, journey started with a trip to Africa. Namibia, Zambia, Tanzania. I think those were the, safaris that you’re making reference to.

Sebastien Pelletier: Yep.

David Hirsch: Where did the, trip take you?

Sebastien Pelletier: From there we went to, Turkey. that’s where we were able to do the balloon ride in Cappadocia that Edith had been dreaming about. But from there we went to Mongolia. We spent 30, five days in the countryside, which was amazing, but also challenging, you know, both the living conditions and the food, which was essentially boiled mutton and boiled mutton and boiled mutton. And from there we wanted, to go to Japan, but couldn’t. So we flew to Indonesia, where the food was much better. Stayed there a few months, learned to surf and just had an amazing time, scuba diving and other things. From there went to Southeast Asia, so Malaysia, where we went to, Borneo, Thailand, Laos, Cambodia. and then we had a choice to make. Where, you know, are we going back through the Pacific or the Atlantic? And one of my dreams was to do a hike, in the Himalayas. So, at some point we said, okay, let’s go to Nepal. You know, we’re better to do that. And, we went there. It was amazing. Actually, still today, Edith and I’s favorite country is Nepal. Not only for the, incredible sights, but for the people we met, the experiences we lived. We were very fortunate to be in areas where they didn’t see a lot of foreigners, but they were so open minded. And the kids just bonded immediately. So for us, it’s really a highlight. From there, we went to Oman, Egypt, came back home for a few months and finished off in, Ecuador and the Colombia.

David Hirsch: Yeah, well, just amazing.

Sebastien Pelletier: See a sunrise on a mountain, make friends in other countries. Dare to say, I want to drink juice on a camel. Like, really? Why?

David Hirsch: I thought. I remember reading someplace that, you had budgeted $200 a day, which, you know, I’m the math guy. You’re a Math guy. That’s $6,000 a month over the course of the year. At $72,000, that’s a pretty economical budget for a family of six, including transportation, lodging, and food. So I’m sort of curious to know.

Sebastien Pelletier: How did you pull that off for, flying? We had a lot. You know, our parents helped us with points, for sure. One of the biggest thing we wanted to do, at least in terms of traveling, is to take as less planes as we could for obviously, ecological reason. And also, it’s the best way to meet people from the areas we were traveling to is to really take these buses, take these trains, anything we could. So that’s one way we did. And, I’d say the other thing is, obviously, I’m the countenance. My wife didn’t care so much about the money, but I did. I’d say also the way we wanted to travel

00:40:00

Sebastien Pelletier: is really be close to the people. So it seems like, oh, we could have made choices to go in youth hostels or to go in homestays or things like that for economical reasons. Obviously it helped. But there was a deeper reason where it’s. That’s the place where you actually meet the people in the country you’re in, and they’re so happy for you to be there. And most of the time, we didn’t plan so much activities because they wanted to bring us either to other family members or they’re offering us, you know, go to this rice field or go see, you know, this activity. But it’s not necessarily the big things. It’s really a small thing of this world. Go play soccer with the school children, et cetera. So for us, doing that, going camping, you know, you talked about the experiences. That’s probably the biggest memory we have is the people we met and these types of experience we made. You know, one example is our favorite family activity is hiking. And hiking doesn’t cost a thing most of the time. So, you know, it was just off the pandemic, so prices were still reasonable. I think we couldn’t do that today. Everything has just been crazy. Even at the tail end of our trip, we saw the difference from when we started.

David Hirsch: So, I was looking for things like bungee jumping and skydiving, but I didn’t see that.

Sebastien Pelletier: That would have been my thing. But obviously, you know, we were able to do zip lining, rafting, canyoning, even though we probably couldn’t do it in America. But, you know, we did as much as we could where we could include the whole family.

David Hirsch: Well, from, one travel dad to the next. the most memorable family vacation that the Hirsch family ever took, and this was when the kids were, I think they were 10 to 17, was to new Zealand, where we did go bungee jumping and skydiving, because you could do that. It’s not illegal like it is in the United States to jump out of airplanes.

Sebastien Pelletier: Yeah.

David Hirsch: And, we look back on and think, what were we thinking jumping out of airplanes with our kids? I’m just interpreting the experiences that you’ve just provided your kids. You know, it gives them a sense of confidence to be able to do things at a young age. Right. That, you know, are a little bit dangerous. You know, the whitewater rafting looked a little bit dicey in the documentary because you’re like, well, geez, if that raft goes over somehow, some way, you know, that’s going to be a little bit of a scramble because you guys are not man on man defense. There’s not just two kids and two parents. Right. There’s four of them and there’s two of you. You’re in his own defense. So, you know, you, you have a different, strategy. Right. For dealing with, adversity and different challenges, but not so much focused on the danger of it, but just saying that, you know, when you get outside your comfort zone, which, was pretty obvious that each of you at times, if not all of you, were outside your, you know, normal environment, your comfort zone. That’s where the learning takes place. Right. And I think that’s really powerful.

Sebastien Pelletier: Exactly. And yeah, and I think one of the way we see it is that we do just enough. You know, we do get out, but never in danger. You need to leave the kids as much leeway as you can. So that’s when they learn. They learn what’s dangerous, where their limits are. You know, you’re always kind of there to make sure you’re not pushing too much, but leave them as much as they can, and you know what? They’re going to surprise you. Kids are much more resilient than we tend to think about it, and you know what, we’ve all done it before. We’ve all been through that. So why not give our kids what we were able to do? and I, ah, think that goes with our philosophy is that if they want to do as much as they can in their life, they’re going to need to push the boundaries.

David Hirsch: Yeah. Well, that’s fabulous. Thanks for sharing. So I’m sort of curious to know what role spirituality has played, if any at all.

Sebastien Pelletier: You know, for us, it’s always about believing in a good future in the sense that we have trust in life. Anything you plan is not going to happen as you plan it anyway. And life has a way of steering you in ways that you would have never thought. But if you follow, and he says that is that every time I took a path, it’s because life put it in my way and trust into where life takes you. You know, never we would have thought of, one, having a diagnostic, two, doing a trip like we did, and, you know, three, having a documentary and everything that went with that. And now Edith wrote a book about our story and now she’s giving conferences. Who would have thought we would have went into that way? So I think the way we see it is believe in life and where it takes you and don’t hesitate to just go with it.

David Hirsch: Sounds good. So I’m thinking about advice and I’m wondering, what advice would you offer parents, specifically dads, who find themselves with a diagnosis, an unexpected diagnosis, you know.

Sebastien Pelletier: As we said, after, through all the process of grief, I think one thing is to try to see the

00:45:00

Sebastien Pelletier: beauty in the world, try to focus on the positive. It’s not that, you’re trying to diminish what’s negative, but if you put more positive and if you focus more on that, you, know, it’s like anything. The more you focus on something, the more you see of that. And I think that’s one thing that helps us, is yes, there are challenges and yes, there’s things that are difficult to accept. But the more you see the bright side of it, the more that you see that the glass half full, the easier it’s going to be to move forward and to find solutions.

David Hirsch: Absolutely. So I’m sort of curious to know why you’ve agreed to be a mentor father as part of the Special Fathers Network.

Sebastien Pelletier: Well, I believe a lot in giving back. As you said, we’re in the beginning of the process with our children, but we’ve already had so much support that I think Any help I can provide to another dad, it’s already that, that we’ve won together. I think that’s what we’re all about, is to be able to share experience and to be able to pay forward.

David Hirsch: Yeah. Well, we’re thrilled to have you. Thank you for volunteering. Is there anything else you’d like to say before we wrap up?

Sebastien Pelletier: I don’t think there’s challenges big enough that cannot be overcome. I think the importance is to really try to get the help. I’m saying that man to man, get the help, try to move forward as best as you can. And there’s no right or wrong. There’s just the way you’re trying to do it. We don’t have all the answers, but you have to try.

David Hirsch: Yep. Pearls of wisdom. Well, I’d like to give a special shout out to my friend, Mark Myers, from Chicago Fellowship, Bible Study Group here in Chicago for helping connect us. He was the one that said, hey, what do you think about that documentary, BLINK? I’m like, what are you talking about? So, he was the one that turned me onto it, and I’m so glad that he did. If somebody wants to learn more about your work or to contact you, what’s the, the best way to do that?

Sebastien Pelletier: Well, we, we got a family page where we have all our adventure. It’s, it’s in French, it’s called plain l’ auxieurs. So in English, it’s full of their eyes. And that’s where we document everything we do as a family. And, and I think that’s, that’s where it all started, where people start, noticing us. It was a, it was only a, a family page that we did for people to follow us, family and friends, which degenerated and into this much bigger thing.

David Hirsch: Well, I’d like to also include the, link to the documentary BLINK, which has a National Geographic link. and, I’ll include the information on the organizations that we had discussed, the ones that your family has benefited from. I’ll also include your LinkedIn profile. Some people are, LinkedIn social media oriented.

Sebastien Pelletier: Yeah.

David Hirsch: Sebastien, thank you for your time and many insights. As a reminder, Sebastien, 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 thank you for listening to the latest episode of The Special Fathers Network Dad A 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 equivalent contribution? I would really appreciate your support. Sebastien. Thanks again.

Sebastien Pelletier: It’s a pleasure. Happy to have been there.

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 group facebook.com groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to 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.

00:49:36