397 – Daryl Potter of Toronto, CA A TD Merchants Exec, A Prolific Author & Father of 2 Including A Daughter with CFC Syndrome

Transcript:

Darrell Potter: One of the keys to enjoying life is recognizing that, you know, if my daughter would have been born healthy, that wouldn’t have actually fixed the hunger in me. If I could get myself down to 9% body fat, that would not fix the hunger in me.

David Hirsch: It might satisfy an appetite for a couple days, though.

Tom Couch: that’s our guest this week, Darrell Potter, a prolific author who’s employed at TD Merchant Solutions in Toronto, Canada. Darrell is married to Carolyn and has two children, Jackson, 21, and MacKenzie, 24, who was diagnosed with CFC syndrome. It’s a fascinating conversation, and we’ll hear it 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.

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David Hirsch: Now let’s listen to this intriguing conversation between Darrell Potter and David Hirsch.

Darrell Potter is a prolific author and father of two, including a rare disease

David Hirsch: I’m thrilled to be talking today with Darrell Potter of Toronto, Canada, who works at TD Merchant Solutions, is a prolific author and father of two, including a daughter with a rare disease. Darrell, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Darrell Potter: It’s a pleasure to be here.

David Hirsch: You and your wife Carolyn have been married for 28 years and the proud parents of two son Jackson, 21, and daughter Mackenzie, 24, who was diagnosed with cardiofacial cutaneous, otherwise known as CFC syndrome. Let’s start with some background. Where did you grow up? Tell me something about your family. Sure.

Darrell Potter: I was born in Canada, but I grew up in California and, moved back to Canada on my own when I was 19. so, I’ve been able to enjoy multiple parts of two countries so far.

David Hirsch: Yeah, well, those are pretty diverse. Two places they are.

Darrell Potter: And when I say Canada east and west, but also Northern. So I was 900 miles north of the American border, up north of Dawson Creek at one point. So, from there to California was a shock to the system.

David Hirsch: And when you were growing up, did you have siblings?

Darrell Potter: I have one sister. She’s five and a half years younger than I am.

David Hirsch: And is she American, lives in the US or is she still back in Canada as well?

Darrell Potter: She stayed in the States. She was born in Canada, but she stayed in the States. She’s married to an American ex serviceman and they now live in Colorado. okay.

David Hirsch: And out of curiosity, what did or does your dad do for a living?

Darrell Potter: My dad, he’s retired now, but he was a minister. So a, Christian denomination, started off Baptist and then went on to a, Reformed, denomination, which is a more conservative flavor of Protestant Christianity.

David Hirsch: And I’m sort of curious to know. What type of influence did your dad have on you?

Darrell Potter: My dad’s a, an interesting person. he’s six foot four, man’s man, in the sense of, you know, if you’re wood chopping or building a building or some of these sort of woodworking or particularly male type activities, he’s the guy. But he’s also academic, by nature in terms of working as a minister, studying ancient languages and prolific, reader. So he carried both in one as a human, as a father, a little bit absent. And that was characteristic of both my sister and I’s relationship with him. But well respected, often served as chaplain for the sheriff’s department and other types of roles in the community, whatever city we happened to be living in at the time.

David Hirsch: And was it an east coast, west coast? Did I remember that? like California and Pennsylvania?

Darrell Potter: Yeah, they moved around. We were in California for years. After I moved out of the house, they went to Wyoming and they’re retired in Pennsylvania now.

David Hirsch: So what were the most important takeaways you had from your relationship with your dad? Lessons learned, perhaps.

Darrell Potter: It’s interesting as one ages and has your own kids, how that evolves over time. Certainly, as a teen, pretty traditional, A, figure to look up to, not only physically, but in terms of the diverse. you know, my mom needed dresses once, so he taught himself how to sew and made a couple dresses for her. It was the beginning and ending of his sewing career, but she wore the dresses for years. If plants needed growing, if things needed building, if dresses needed sewing, he,

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Darrell Potter: you know, he would figure it out. As a teenager, the impression was one of how can I meet all of that? He’s doing everything. Lenz, became a little different as I gradually recognized, an interpersonal disinterest. I think some of it might be generational, but at the same time, I’ve recognized that that’s not the relationship all of my peers have with their fathers, where there’s a great disconnection in other areas, you know, less desirable impacts. He didn’t come to my wedding, for example, because it just wasn’t practical. You’ll be busy. I’ll catch up with you later. Those sorts of observations would not have even had the opportunity to occur as a 16 year old, but as a 27 year old when I got married, left a deep mark, you know, likewise, he hasn’t, formed relationships with my own children because there’s no particular need. They have me. so there’s some peculiar gaps that disturb. So the impression my father’s left on me has been evolving as I evolve and understand what healthy looks like.

David Hirsch: Yeah, well, you didn’t use this word, but I think it applies. And I only know it from my own personal experience. There’s a certain level of dysfunctionality. And, when you mentioned that your dad didn’t go to your wedding. My dad didn’t go to his own dad’s funeral.

Darrell Potter: Wow.

David Hirsch: It wasn’t practical.

Darrell Potter: Right?

David Hirsch: Right. Because there was some distance to travel. I’m, like, really sure. And there’s a little bit more of a backstory there, but, you know, there’s just some disconnects, and you’re like, no one is all good or all bad. Right. That’s just the human condition. But the way I think about it, Darrell, is that, maybe we emulate the things that our parents got right, and we want to do that maybe the same way or similar way to them, and then maybe live vicariously through some of the other, experiences and say, I don’t want to do it that way. I’m going to do it my own way.

Darrell Potter: Right, right.

David Hirsch: And, the way I articulated it going back about a decade ago is, I needed to break the cycle of father absence that I witnessed in my family.

Darrell Potter: yeah.

David Hirsch: And I’m not proud of this. I wasn’t close to my dad. I witnessed that my dad wasn’t close to his dad. But, you know, I didn’t want that. Right. I. I wanted something different. And, you know, maybe the pendulum swings this way, you know, like when we were younger or our experience, and maybe it’s swinging back the other way and, you know, Maybe we’re overcompensating a little bit.

Darrell Potter: It could be. You never.

David Hirsch: You never know.

Darrell Potter: Yeah.

David Hirsch: Anyway, thanks for being so open and authentic.

Any influence, um, from your grandfathers? No, my

Any influence, from your grandfathers?

Darrell Potter: No, my, on my, father’s side. I understand that I used to ride around in the pickup with him when I was two or three years old, but he died when I was four so I have no memory of him at all. And then we moved out of the Ontario area where I was born when I was 4 and ties were cut at that time with all extended family. So I was in university first year when I heard my maternal grandfather died. But he was a stranger to me, so it was more of an information detail. Unfortunately there was no connection.

David Hirsch: Yeah, well, sorry to hear that your grandfathers didn’t play much of a role in your upbringing or character development. There seems to be a little bit of a void there. any other men that come to mind either as a young guy or perhaps as a young adult that, you know, we’re influential.

Darrell Potter: It’s interesting. I had a great conversation about two weeks ago with a close friend of mine who’s adopted. he was talking through a recent mutual older friend who had passed recently, who was like a father figure to him. And you know, how he was absorbing that. And I described to him, he’s known me for decades. I described to him, you know, I’ve never had that at any point. Never, mind the missing uncles. There was just never that male human in my life. Part of it, I think, to be perfectly candid. and this may go into territory you don’t want to explore too much, but I was 12 years old when I was assaulted, by a, by a pedophile. It led to a trial, went to prison. All that stuff, you know, was all dealt with, but it actually cut off a very, important, ability to bond with men or trust. I had one friend that I maintained from when I was 9 years old that survived that episode. And I, was in my late 20s before I started forming male friendships. And I would say I was in my 30s before they developed anything resembling quality, like depth, I mean. And then, you know, I mentioned this one friend now who’s I’ve been with, you know, buddies with for decades. And I’ve got, I’ve got now six or eight guys that are good quality friends, but that was a. They’re peer level, they’re not older. And you know, I think in the last three or four years I’ve started to Recognize. Wait a minute, you know, that’s what that

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Darrell Potter: that is. On the plus side, I have great relationships with women all over the place, older or younger, and not in any kind of inappropriate way. I just didn’t learn to communicate the way men communicate. I know we’re all human, but there’s also a slightly different style of interaction that it took me a very long time to get used to, even at the peer level.

David Hirsch: Yeah, well, thank you for being open and transparent about that. Seems quite traumatic. Did you have to actually go through counseling, at a certain point just to put that horrible, ah, experience in perspective?

Darrell Potter: you would think that would be the appropriate thing to do. The short answer is not really the mildly longer answer is I read a lot of books starting in my twenties and then in the last couple of years I’ve actually engaged a therapist. I write about it at the end of my last book as being some self discovery and recognizing that I may be a few decades late here. It hasn’t revolved around that episode so much because it was actually fairly well dealt with solo. Even though that’s not supposed to be the way that works. But it, you know, certainly entered the picture, you know, in a, in a more background detail way as opposed to something actually with, you know, I don’t wake up with nightmares or anything I’m trying to resolve.

David Hirsch: Yeah, well, thank you for sharing the way I think about incidences like that. And I’m not speaking from personal experience but just from observation and conversations with others and as well as friends that it’s a scarring experience and you can’t see the scars in most cases. Like they’re not physical scars but they’re emotional scars and it’s not like predictable how all that’s going to play out. So it’s curious to hear you say that, you know, there wasn’t much to do until you got to be about 20. And if I compare phrase what you’ve said, you started to read a lot and that’s like more of a self help discovery journey that you were on. And then maybe more recently there’s an opportunity to take a little bit deeper dive or look at things from a therapeutic perspective.

Darrell Potter: Yeah, yeah. if I can just. And I know this isn’t the purpose of this particular podcast, but sometimes you hear in the press women say that they don’t report things because for various reasons and that sounds very cowardly or you’re leaving. When I look back, the trial was in the aftermath was far worse than the assault because the assault was aborted. And if I had to do it over again, there’s a part of me that wonders whether I would go through the whole process. so all that to say for those who have never been through that sound bite. You usually hear more from a female, voice that’s not bs And I’m glad I went through it because there’s a lot of other kids that were probably spared because Turkey went to jail and has got a sex offender label on him for the rest of his life. But at the same time, while I can be proud of a brave 13 year old, that’s a real thing.

David Hirsch: Yeah. Well, thank you for even, going there. I appreciate it.

You took a BA in liberal arts from University of Waterloo

So my recollection was that you took a BA in liberal arts from University of Waterloo and I’m wondering where did your career take you from there?

Darrell Potter: Sure. So the BA was late. I grew up homeschooled in high school. Despite my dad’s academic, interests, he never graduated high school. So they didn’t take a lot of stock in, formal education. So I did a couple years at UBC on the west coast in Vancouver, decided that I was getting deeply in debt with student loans and got a job at the bank as a part time casual teller. Figured I’d do that for a while, see what happened. 34 years later I’m still there and not, as a teller. And it was quite a bit later in my career. I’d done some seven years in branches doing mortgages and mutual funds as my last role. Then I moved over to the brokerage side for five years, again on the west coast still, and managed, a brokerage office, Got my broker’s license and all that jazz. Moved into a head office job in Toronto. We had a very large book of business in the term products group that I was the margin manager for. And it was then that I had a boss take me aside and say, hey, listen, as long as people know you, they’ll keep hiring you. But, you know, at some point you’re going to interview with somebody who doesn’t know you, so, you need to go complete your ba. And by then I had two years chemistry under my belt, a lot of physics and calculus, and there was no way I was going back to a chemistry lab to finish my degree. By then I’d been over a decade in the bank. So, I wound up with a liberal arts degree. Basically I picked the bachelor’s degree that had the most electives a Part of it, which most people might pick. Basket weaving for those electives. And mine were all physics and calculus. And then I took all the rest of the liberal arts courses. So I got a great degree for a writer and not a great one for a banker.

David Hirsch: Yeah, well, sometimes people’s education does not line up at all with, their actual career

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David Hirsch: experience.

Darrell Potter: It’s pretty common. Yeah.

David Hirsch: And, you know, sometimes people think they know what they want to do and then it takes them a while to realize, you know, that’s not really what I want to do for the rest of my life. M. You know, the most important thing is to, I think, develop, a ability to think and understand and solve problems and hopefully find something that you’re really enthusiastic about. Right. Something that, you know, lights your fire, that you get up in the morning early, you stay up late, and, you know, that you can lean into. And I certainly think that that’s been your situation 100%.

Daryl and Carolyn met in a church on the West Coast

So I’m sort of curious to know, how did you and Carolyn meet?

Darrell Potter: We met actually, in a church on the West Coast. she’d been part of a similar church here in Toronto through mutual friends. moved out west, got to know the singles scene in that Christian, community out West. I’d interacted with her a few times, had lunch with her once. And then they reorganized a singles, they had the big singles ministry, in the church that was divided up kind of with groups and geographies. So one year they decided the two of us would lead a, group together. And so we met, shortly after, New Year’s Eve to, say, okay, we’re you’re you and I’m me. And let’s see, you know, what kind of activities we want to organize this year. And I went home from that lunch and told my roommate I’m gonna marry her. And one of her roommates actually brought me up to. Her name’s Carolyn. Brought me up to Carolyn saying, you know, what about Daryl? And, her response was, you know, absolutely not. I think she called me that skinny poetry boy with her general take on my humanity. So I had a bit of an uphill battle. It took me, Took me three months from there, four months almost to, swing her around to, dating. And then, eight months later, we were engaged and we had a three month engagement. I thought I better put a ring on this girl’s hand while she’s still in the mood.

David Hirsch: I love it. Thanks for sharing. Well, there’s some really fun Stories of guys in the network that there was a little resistance or a lot of resistance at first and you know, if you really know you want something right, you’re just going to keep moving forward. Right. Doesn’t always end that way. But it sounds like you had a pretty clear idea of the the importance of that relationship and you weren’t going to take no, an initial pushback. So. Thank you.

Prior to having children, did you have any connection to disability or special needs

So prior to having children, did you have any connection to the disability or special needs community?

Darrell Potter: A little bit. When I was in California, I often volunteered in the summers for the Sonoma State Mental Hospital. And that’s a very sophisticated area. It was at least back in those days. I’m assuming still is sophisticated facility with m multiple layers of, you know, what we would call independent living situations to right through to the straight jackets and rubber walls, kind of environments. And then I also worked as a night, nurse for years for an elderly couple starting at 13 years old actually. And that was a seven night a week job. So that’s not special needs. But they were in their 90s and you know, so there’s a lot of bedpens and you know, unusual things for a 13 year old to be dealing with and then Nothing from age 19 until my daughter was born in my early 30s.

David Hirsch: Yeah, well, not a specific, you know, kid with autism, down syndrome, cerebral palsy, rare disease, type of, you know, knowledge or understanding but you know, you were dealing with people that you know, would certainly fall in the disability community, that’s for sure.

McKenzie was diagnosed with two rare conditions when she was eight years old

So what is McKenzie’s diagnosis or diagnoses and how did they come about?

Darrell Potter: So when she was born she looked fantastic and healthy and everything else. 10 day mark, we knew he had a problem because she was still losing weight. she continued to lose weight for the first six months. She was down to being able to see the skull plates in her head and was not expected to survive her first year. she was only eight years. It wasn’t until eight years old that we got a diagnosis. the first diagnosis was a hyper rare condition that does not have a friendly name. it’s called cytochrome c oxidase 4 complex 4 deficiency. And if you’re asking me, okay, what’s a short version of that, the answer isn’t there isn’t one so rare nobody’s bothered to give it a nice name. There’s a variant of it called lay’s disease that is more common but that’s not what she has the second diagnosis came about six months later. cfc. So at least it has an acronym. Cardio Fasciocutaneous syndrome. The first one is the more serious. she should not have survived till age 3 and would definitely not make it through her teen years, was the diagnosis we got at, eight years of age. And then the second one, in addition to developmental delays and seizures,

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Darrell Potter: was going to bring heart disease into the picture in her teens. And therefore, if the first one didn’t get her because she wasn’t going to make it out of the teens, the second one was going to get her because it was going to crank things up during the teens. But she’s 24 and somehow still here. But it is a degenerative condition, so there’s less of her here each month.

David Hirsch: Yeah, well, very sorry to hear about that. And, is she verbal? Non verbal? Did she speak or not speak? How does she get around?

Darrell Potter: she spoke until age roughly 12. It started deteriorating around 10. But 12 is when she spoke her last word. she never was great at full complicated sentences, but she could communicate what she wanted, including navigating you through to another room and turning on music and starting a pick her up and dance kind of situation. So she was verbal. Walking was never without the aid of a walker, but we had one that had wheels and so she would run. But again, that deteriorated. And so she was probably 14 the last time she used the walker. And so now she can still scoot around on her bum. She’s fed through a G tube in her stomach. She gets seizures every day. She has emergency medical intervention three or four times a week. Life saving intervention. And she’s been palliative care since about, eight years old.

David Hirsch: Holy moly.

Darrell Potter: Which is not usually how palliative care works. They don’t put you in palliative care so that you can be there for. What is that, 14 years? I can’t even do math. 16 years in palliative care.

David Hirsch: Yeah. that’s certainly the exception, not the rule. M. I always associate palliative care. Right. Just trying to make somebody more comfortable.

Darrell Potter: She’s been end of life for 16 years. So we’ve been like, we didn’t plan for this because she’s not supposed to be here. you know, it’s a blessing. You know, she was hugging me earlier. It’s a blessing to still have her, but her life is torture. So there is a certain level of let her go. even though that’s a horrific thing for a parent to say. But if anyone’s ever had a relative die of cancer and there was a six months or two year period of, you know, torture for a whole ecosystem before closure. You know, that’s, that’s 16 years is weird. That’s not how it’s supposed to work.

Mackenzie was diagnosed with cerebral palsy at age 8

David Hirsch: Yeah, well, you knew you were dealing with something different from almost the time of birth with her lack, of ability to put on weight or gain weight. And there’s that period of time between like 0 and 8 from what I remember you saying until there was an actual formal diagnosis. What were some of the fears that you and Carolyn have had, you know, starting from the time of birth or, you know, as Mackenzie has gotten older?

Darrell Potter: So initially it was just, more in the category of I didn’t care if she ever played in the Olympics. I just wanted to have a conversation with her. You know, as time went on and it became clear that we’re dealing with things more serious than I’d understood. She wasn’t just delayed, you know, that was stressful. But we kept holding out that we would figure it out. I would say movies like Lorenzo’s Oil for any of your audience who remembers that, you know, kind of medical miracle movie with the parents wouldn’t give up and figured out some magic chemistry, a real life story. Those are kind of haunting, or at least they were for me because it’s like if I just do more, if I try more, if I take her to more doctors, if I read more dry literature, I’ll figure it out. That never happened. And then we always just felt like, just tell us what she has, even if it’s bad news, just give us that. Now. Once we were told what she had at 8 years old, then there was a crushing can we wind the clock back to when we at least had hope, you know, now you’re telling us we’ve got a year left. Now that turned out to be a lie or bad prediction. But you know, that changed the narrative yet again and life evolved. So she’s 24 now. My wife and I are in our late 50s. And so we’re looking at this now with a different fear. And that is what if she screws up everybody’s forecast overall and she outlives us because she’s at least right now too active for an acute care hospital. But she’s too high medical needs for the equivalent of an old folks home and certainly couldn’t go in a group home. She m needs one on one medical attention because of the round the clock seizures. So there is, in the absence of sonoma State mental hospitals type things, which I think many western countries have shut down many of those sorts of facilities. And a pendulum swing away from the abuses that used to exist there. There’s now this gaping hole in the healthcare system in much of the Western world. This isn’t the Canadian or U.S. thing. It’s a European problem too,

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Darrell Potter: where, you know, we recognize it vaguely in the homeless population. Maybe, you know, those that are. Have mental health issues, but our daughter’s another one. There’s, There’s a wing of Sonoma State Mental Hospital which would have been the right one for her. I remember working in it. I don’t know if it still exists there in Sonoma county, north of San Francisco, but it doesn’t matter. I’m in Canada and nothing like that exists in Canada anymore. All of those sorts of institutions have been shuttered.

David Hirsch: Yeah, well, that sounds like a pretty tough situation. You know, you went from thinking you’re going to lose her just because of all the medical challenges to maybe thinking, oh my gosh, she might outlive us. Now what? and I’m hoping that, you and Carolyn can maintain your good health and live under the 80s or 90s and, you know, not have to, you know, contemplate, you know, the. That is a reality. With the benefit of hindsight, are you able to look back and say, if it wasn’t for this advice or that advice, you know, I don’t know where we would be. Was there any meaningful advice you got early on or during the journey?

Darrell Potter: Yeah, you know, I’ve got a book I read. my wife brought it to my attention early on. Somebody brought it to her attention called Extraordinary Kids. It did an amazing job of helping us recognize that parents of special needs kids who also have a typical child often make a very common mistake. And that is the special needs child sucks the oxygen out of the room and the typical child is left with leftovers. The psychological impact of being not as important for the rest of their life. I was so happy to read that. Before my son was born, his life was altered. He’s never had a family vacation because we cannot leave his sister. you know, either I take my son somewhere or my wife does, but she and I cannot leave together without being a nurse and a, nurse and not a babysitter, but a nurse. And that’s, that’s expensive. so dinner out is 400 bucks before we leave the driveway. And you know, with that kind of, reality, his life has been altered. But at least we were Able to compensate as much as circumstances made us able to.

David Hirsch: Yeah. Well, thanks for, shining a bright light on that book. Extraordinary Kids. And the issue, the way we think about it sort of categorically is the issue of siblings and family balance. Because like you said, there’s a disproportionate amount of your time and energy that go into providing whatever the resources are for your atypical child.

Darrell Potter: Yeah.

David Hirsch: And if you don’t go into it with eyes open, you might wake up a decade or farther into the future and realize, oh my gosh, we weren’t paying attention, we weren’t aware of this issue. And, you know, you’ve inadvertently scarred, you know, your other child or children. I know, not intentionally, but just because you were in the heat of battle.

Darrell Potter: And you know, I will say that even with eyes wide open, we still look back and realize we made mistakes. Because, you know, one of the things we discovered literally only a year ago as I was talking with my wife and I realized, you know what, we’ve been practically dealing with this so well for 24 years. We had learned to take separate holidays because the reality was, or we don’t go anywhere ever again. So we got some good friends to agree to do stuff, but we never did extravagant stuff. Not that extravagant stuff is a life, you know, necessity, necessarily. So last year I sent my wife to Madeira with a girlfriend of hers, and they had a wonderful time. My, wife’s part Portuguese, so she got to see some of her heritage and her friends Portuguese, and, and they just had a wonderful time there. And so I went beginning of this year to Peru, with a buddy of mine. He’d always wanted to surf. And I thought, all right, we’ll go to a surf camp. And turns out I’m a terrible surfer, by the way. but it was great. I hadn’t been on a plane for a holiday like that in 22 and a half decades. but then we had an aha moment where we realized, oh, our son has never had that either. So just this past week, about a month ago, I put a bunch of itineraries in front of him. He’s in a gap year, a, ah, co op year between third and fourth year engineering school. He. So he’s got a year where he’s actually got time, he and I, he picked his itinerary and we’re going to Italy next April. And, it’ll be his first time to get on a plane and deal with customs. And I’m like, I’m glad I’m sending him off into adulthood with him not never having done anything. But dang, like, I should have crossed this bridge earlier than this. I just. It’s amazing how the years go by and you’re not, you know, so quickly.

David Hirsch: Yeah, well, for you dads out there listening, there’s, a pearl of wisdom there that needs, to be paid attention to. And, yeah, that’s a tough one.

Please help Fathers Network gather research on families raising children with special needs

the thought that comes to mind is that the days, are long, but the years go by really fast.

Darrell Potter: It’s amazing. And the older,

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Darrell Potter: I’m sure you can relate. Nobody told me when I was young that they would start to go faster. I knew about my hairline and color and, you know, metabolism. Nobody told me the clock would move faster.

David Hirsch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. Olympic 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.

The biggest challenge to parenting is communication with your spouse

David Hirsch: not to focus on the negative, but what have been some of the biggest challenges, perhaps beyond what you already related to parenting?

Darrell Potter: I’d say the biggest challenge to parenting is communication with my spouse. Both of us grew up with backgrounds with, you know, maybe 70, 80% examples we don’t want to follow. So that leaves two people independently reading books and talking to our friends, and learning things from lectures and so on, bringing that toolkit to the table. Live as any parent does, but not as many things settled as givens prior to the first time you deal with teething or the first time you deal with discipline or the first time you deal with school trouble or, you know, all the normal parenting stuff. An analogy might be for, you know, those who marry a spouse from an utterly different cultural background, maybe even a language barrier where they, you know, they’re like, they’re constantly missing each other because they, their sets of assumptions are so, so different. Whereas my wife and I kind of had no assumptions except, don’t do it. Don’t do what we got. But that doesn’t necessarily, tell you what to do.

David Hirsch: Yeah, well, that would make it more complicated. And, you know, thank you for emphasizing it’s not just the fact that, Mackenzie is non verbal. She’s tube fed, she’s in A hospital bed. She’s wheelchair bound. There’s this need for constant nursing care. You know, you’re unable to take vacations in a more traditional way as a family. I mean, those seem like really big challenges too. I’m not trying to downplay those, but interesting that you emphasize the importance of communication between, parents, between spouses.

Darrell Potter: You raise a good point. And I could bring up the fact that we don’t sleep at night either. It’s a rather material life challenge. Her medical stuff doesn’t stop because it’s sleeping time. But I do think the human heart and mind is capable of adapting itself to a really lot of things, including medical things or, you know, people who go blind or people who have, you know, whatever other challenges, economic or otherwise. But the communication between two humans trying to jointly raise another human is, that’s just fraught with trouble that you never seem to adapt to. Or at least that’s been my personal experience and observation. It’s an ongoing exercise.

Have there been any supporting organizations that Mackenzie’s benefited from

David Hirsch: Have there been any supporting organizations that, Mackenzie’s benefited from or your family has benefited from?

Darrell Potter: Oh, yeah, we’ve got a beautiful couple organizations near here. She’s aged out of both of their programs, unfortunately. But up until she was 18, she qualified for the Darling Home for Kids, which was a, charity. Still is. I still support them financially even though I don’t benefit from them. Who looks after, medically fragile and end of life palliative care children. So Mackenzie qualified in both categories and so they would take her for a, ah, week a summer, and then usually one or two weekends a year. And likewise, there was another organization locally here, Erin Oak for Kids, similar respite program. and they recently extended the program to young adults. But she’s now aged out of that program as well. So that cuts off aspirations. now my wife and I are each other’s respite, but the idea of sneaking away together is a non starter now. But yeah, those have been, those are lifesavers for 18 years.

David Hirsch: Yeah. And I think you mentioned in a prior conversation the church groups have been very supportive as well.

Darrell Potter: Oh yeah, yeah, yeah. Oh yeah. Big oversight there. I think sometimes you get used to certain levels of support and you start taking them for granted. But yeah, everything from you know, you’re living in the hospital and somebody stopping by to take your laundry and do it for you to We had a few moms in a local church when we were, when Mackenzie. We realized when she got her diagnosis that okay, this Isn’t changing. We needed an elevator in our house and they did a big fundraiser to help us get an elevator built in the house. And really miraculous the results from that. It’s its own story, but and sometimes it’s just, hey, it’s been a bad stretch at the Potter’s house and couple

00:35:00

Darrell Potter: of the guys, it’s like, this isn’t your stereotypical church reach out, but hey, let’s go have a beer. And sometimes that’s just what you need.

David Hirsch: Yeah, I can relate. thank you for sharing. And you’re very fortunate to have, you know, supportive friends or fellow church members to, you know, sort of show up and do things. Not, because you’re asking, but just because they recognize this unmet need.

Darrell Potter: Right, yeah, exactly. And not because somebody had a program they were running that week, but because folks just noticed and cared.

David Hirsch: Yeah, that’s wonderful.

So let’s talk a little bit about your not interest in reading books, but writing

So let’s talk a little bit about your not interest in reading books, but writing. There are a, series of books, the most recent of which is something more, Living well in a Broken World, which I think came out in 2024, just this past year, which I had the benefit of listening to on Audible. Yeah, it’s not a book about getting into heaven. It’s about navigating the here and now with resilience and grace.

David Hirsch: What was it that motivated you to write this book and what’s the backstory there?

Darrell Potter: Sure. I’d had some kind of an existential crisis that led to the writing of the first of the non fiction books. I’ve got three novels in print as well. But once that first book, you know, resolved a kind of spiritual existential. I didn’t sign up for this and I don’t like the life that’s been chosen for me.

David Hirsch: Which book is that by title?

Darrell Potter: Even the Monsters.

David Hirsch: Okay.

Darrell Potter: Living with Grief, Loss and Depression. So that, that was a book that really helped square me with the planet, you know, both spiritually speaking and you know, will to live, if you will. And I don’t mean that just metaphorically, but I still wasn’t enjoying life. I had a very deep sense that life had now become understandable and I was at peace with it, but I was not at joy with it. For any of your audience that are Christian, they might recognize sort of a transactional kind of faith that’s maybe a little overly focused on getting to heaven as opposed to surviving this planet, or not just surviving it, but actually enjoying it. And that coupled with a kind of Christianity that I would have grown up with as a kid that was very rule, bound and conservative to the point of, you know, kind of the negative stereotype of the Puritan. Grim endurance kind of, kind of mindset. An excellent ethos for getting the, the tough ground, plowed up in spring, but, you know, not the best ethos for recommending smiles to your fellow human. Or at least that was my experience of it. I want to be careful not to paint too wide a brush, based on my own experiences. So I wasn’t enjoying life. And there’s a book in the Old Testament called Ecclesiastes which Jews will recognize as a piece of their wisdom literature as well, and Muslims will, often recognize it and appreciate its messaging. Frankly, atheists can read that book and find it quite engaging because it says right up front that it’s not interested in heaven or salvation or barely references God. It’s like in its own words, it wants to know about life under the sun. Don’t talk to me about an afterlife. I want to know about this planet. I got to live here. And the writer of Ecclesiastes is, a very wise king, unbelievably wealthy, who spends his entire life essentially on a mission to figure out how to enjoy this place. He goes down some ridiculous roads. He tries partying for a decade. He, he tries building projects that would beggar modern day building projects. He tries music, he tries art, he tries women. He tries everything. He comes out the other side with some really fantastic material. So I decided, you know what, it worked the first time because it was a similar book on suffering that I used to shape my, my, my, even the monsters book on suffering and my existential crisis. so I decided I’m going to study this book until I figure out how to enjoy life. Because that seems to be what this thing’s been famous for 3,000 years for. So that’s what I did. So it’s, it’s, like my first book. It’s a mixture of memoir and commentary on an ancient poem which happens to be part of the sacred scriptures of several of the world’s major religions and may have existed in the independent form even, even outside of that. And, it was my quest to figure out how to enjoy my life and not just survive it or endure it or be noble in it, but actually like living, which I was not very good at.

The book begins with a nihilistic opening that repeats over and over again

David Hirsch: So what would you say the top, two or three takeaways are?

Darrell Potter: One of the big takeaways was, those who know the book know that

00:40:00

Darrell Potter: it starts off, King James Version would say, vanity of vanities. All is vanity. More modern translations would say something like meaningless. Meaningless. Everything is meaningless. A very, nihilistic kind of existential opening which repeats over and over and over and over again. I think it’s, if memory serves, 38 times that root word is used in the book, the original text. And it doesn’t mean that it’s a interpretation that I get into in the book, how it came about in an ancient Latin version that then got copied into English and transferred for decades later. The word means breath. It’s a metaphor. Metaphors are things that are supposed to evoke something poetry is supposed to evoke. And metaphors in particular are supposed to evoke a feeling. So breath, breath. Everything is breath. Utter breath is how it should have been translated. And what it’s getting across is the nuanced aspects of how breath is repetitive, fragile, hard to pin down. You can see it on a cold day, but good luck grabbing it and putting it in a bottle. Essential to life. Fragile, you think you can control it. You know, you can hold your breath, but good luck doing that for very long. You know, life is all of that. That’s the beauty of a metaphor. You can mean a lot of things with one image, and you can mean every one of them without having to write five paragraphs explaining yourself. And so what it gets at in the book, to the back to your point of what the takeaway is this ache for more, this hunger, this feeling that, you know, the woman I married isn’t quite enough. The job I have is not like the end of the, you know, I need a better one. The bank account balance I have needs to be bigger. The new car I have is two weeks old and needs to be replaced. That, that desire for more, that is wired, the book says that is wired into the human condition on purpose and tells us why. But for our conversation today, we’ll stick with the fact that it’s there on purpose and you cannot escape it. And as a matter of fact, if you get to the pot of gold at the end of your metaphorical rainbow, it might be one of the worst things that ever happens to you because you’ll realize that even that is not enough. He says things in 3000 BC that should resonate for us today, that essentially, you know, I’m now updating the language. But take a look at Hollywood, take a look at Washington. Take a look at a lot of really unhappy people who have supposedly made it to the pinnacle of their existence. And what marriage are they on? And what rehab clinic are they going into? Or just like these are not signs of everything going swimmingly because they’ve hit their third Oscar win or super bowl or whatever their deal is. This is evidence that we are all relentlessly chasing, as Ecclesiastes says, chasing the wind, you will not catch it. And that one of the keys to enjoying life is recognizing that, you know, if my daughter would have been born healthy, that wouldn’t have actually fixed the hunger in me. If I’d have remembered or thought to take my son on European trips when he was 10, that wouldn’t fix the hunger in me. You know, if I could get myself down to 9% body fat, that would not fix the hunger in me.

David Hirsch: It might satisfy an appetite for a couple days, though.

Darrell Potter: Yeah, yeah. I’ll feel good in the mirror for a day or two and then it won’t be enough. That’s just humans.

David Hirsch: Yeah.

Well, I just want to say I really, really enjoyed listening to the book

Well, I just want to say I really, really enjoyed listening to the book and, thank you for taking the time not just to write it, but to have it recorded. for those that find, it difficult to find time to read, it’s a little bit easier to find time to listen. And, it’s really powerful. There is so much there. It’s the type of thing I could re. Listen to.

Darrell Potter: But the narrator of that book is a real, gem. Bill Forsyth and I found him through a bit of a miracle. He did both of my nonfiction books and he was a parent of a special needs, child. he lost his daughter a couple years ago, in her 20s finally. But, Yeah, so even the narrator’s got a, close association with the material.

David Hirsch: Yeah, well, thanks for sharing.

What advice can you share with parents facing difficult parenting situations

So I’m thinking about advice now and I’m, curious to know what advice can you share with parents, specifically dads, who find themselves in a situation that they didn’t ask for that’s rather unpredictable.

Darrell Potter: it’s hard to give generic advice because everyone’s, in a different place, a different situation. You know, I’ll risk being maybe overly general, but I would say one of the things is

00:45:00

Darrell Potter: to come to terms with your emotional state and reaction and accept that it may evolve even. Not every guy is great at getting in touch with where they are deeply to the point where I think some particularly early on, are just walled completely off, but to where you can let yourself cry, where you can let yourself mourn the future that is not going to be, and that it may surprise you, but that’ll come up if you’ve got younger kid child, that may come up later. When our sweet 16 rolled around and we realized there’s no friends coming to this sweet 16, you mourn all over again. And I think humans are like this. But I think men maybe in the west, even more ah, driven that way to not accept that and to maybe even write that kind of thing off as weakness. I dealt with this five years ago. I don’t need to deal with it again. And that’s just not how the human heart works. And I think if anyone feels like they’re different, I would just say look around. Men don’t drink because they’ve dealt with their emotions. Men don’t, you know, pick your, your bad outlet for self medicating their trouble. They don’t do that because everything has been sorted in their own minds with the reality they’re facing. And it’s okay to cry, it’s okay to ask for help. And you might even have to upgrade a few friends. You don’t have to get rid of them all, but you may have to upgrade to make sure you’re getting a circle. They will notice and take you out for that beer. I had one friend who turned to me on a fishing trip and say, so how are you doing with your feelings? That was the best he could do. But just the fact that he tried, he made me laugh, which was not his intention. But you know, he was clumsy but he was well meaning.

David Hirsch: Yeah, well, I think the point that you made about, you’re not alone. It’s important to be in touch with your feelings and trying to not try to mask them. Self medicate is what you’re referring to. Like with drugs and alcohol and pornography and all the other ways that guys sort of deal with their stuff.

Darrell Potter: Yeah.

David Hirsch: And you need to find like minded guys. Right. You know, where it’s safe, where you can talk about things that, you know, you can’t talk about at work, you can’t talk about maybe even with your spouse, that, you know, it’s really important to find that group. And you know, the Special Fathers Network is sort of part of that solution.

Darrell Potter: Yeah.

David Hirsch: Whether it’s just listening to podcasts or attending virtual conferences or taking a deeper dive with the mastermind groups and meeting with guys on a weekly basis and you know, living life together. Yeah, life is hard enough. And I think most guys make it a little bit harder trying to figure out everything on their own and being in denial about, you know, a whole range of different subjects.

So thank you for sharing. Why is it you’ve agreed to be a mentor father

So thank you for sharing.

Darrell Potter: Parents want to talk about their kids and, you know, it’s very hard sometimes for a special needs parent to talk about the 24 year old with the spitty hands that, you know, gives you a, hug and screws your tie up before you go to work. But the fact that she was alert enough and awake enough and engaged enough for that to be a thing, like, unfortunately, I can’t tell that in most contexts because it makes people like, it’s gross. And that’s not what you celebrate in a 24 year old. But, you know, there’s some special needs people I can talk to and they know exactly what I’m talking about.

David Hirsch: Oh, yeah.

Darrell Potter: And they can celebrate with me.

David Hirsch: Yeah. Well, these are very small victories, milestones, inch stones in some cases. And, if you’re not touched by disability or special needs, you know, why would you expect your friends or co workers or neighbors to really appreciate or understand what you’re going through? Right. It’s not their lived experience. So anyway, a point well made.

Darrell Potter: Yeah.

David Hirsch: Why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?

Darrell Potter: So I think, I love the fact that there is an opportunity in life to make a difference on the planet. And whether I do that by writing a book or by grabbing a beer or talking on a podcast or taking my son to Italy, I want to leave. We talked before this podcast about the, effect your maternal grandfather had on you. And I want to leave the planet having left that mark. I could build the tallest building in Canada. Not that I’m an architect, but I could build the tallest building in Canada. And one day it’ll be somebody’s job to knock it down.

00:50:00

Darrell Potter: That’s what it is. Life is very breath like it’s very fragile. But your maternal grandfather will be having, an impact 200 years from now because of the impact he had on you. So long after you’re gone, that impact is still rolling on and there will be nobody out there to knock that tower down because that’s being passed from human to human to human.

David Hirsch: Yeah. Very profound. you didn’t use the word legacy, but that’s what came to mind. You know, you want part of your legacy to be that you made an impact, you made a difference.

Darrell Potter: Yeah.

David Hirsch: And it doesn’t have to be in sort of things that are tangible. Like you said, it doesn’t have to be like something that was built, a physical structure, but just the, impact that you’ve had in somebody else’s life. And like you said, sometimes it’s just a matter of being there for somebody. A phone call, a text message, beer. Or you know, just to be present. Right. In whatever way that means.

Darrell Potter: Yeah.

David: Thank you for your time and insights on Dad to Dad Podcast

David Hirsch: Is there anything else you’d like to say before we wrap up?

Darrell Potter: I love what you’re doing. I, I thank you for having me on the podcast, but I thank you. I know you’re over 400 episodes in. That’s. That’s time commitment from another career banker who can be busy making money and planning his own trip to Europe rather than doing this kind of thing. So, you weren’t asking for compliments, but let me just say I appreciate that there are men out there who spend their personal time while working a demanding career to do something besides self gratification. Well done.

David Hirsch: Yeah. Well, thank you. It’s very thoughtful. Let’s give a special shout out to one of our mutual friends, Chris Lewis of the Dads with Daughters, for helping connect us.

Darrell Potter: Yeah, absolutely. Thanks, Chris.

David Hirsch: If somebody wants to learn more about the books they’ve written or to contact you, what’s the best way to do so.

Darrell Potter: Ww.daryl Potter.com that’s-A R Y L Potter like Harry.com no connection. No connection.

David Hirsch: I’ll be sure to include that in the show notes. It’ll make it as easy as possible for somebody to follow up. Sounds good, Darrell. Thank you for your time and many insights. As a reminder, Darrell is just one of the dads who’s 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 are seeking advice from a mentor father with a similar situation to your own, please go to 21st centurydads.org thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you’re 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 concern. Would you please consider making a tax acceptable contribution? I would really appreciate your support, Darrell. Thanks again.

Darrell Potter: David, this was fantastic. Thank you.

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

David Hirsch: You’Re a dad, looking for help or would like to offer help, we would be honored to have you join our closed Family Facebook group. Please go to facebook.com groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david2stcenturydads.org the special.

Tom Couch: Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Tune in again next week for another intriguing conversation on the special Father’s Network Dad to Dad Podcast.

00:53:54

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

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad. Lastly, we’re 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. Tune in again next week for another intriguing conversation on the Special Fathers Network Dad to Dad Podcast.