266 – Dan Redfield of Anchorage, AK A Filmmaker & Father of Three Including Ava, Who Passed Away From Infantile Tay-Sachs at Six

Transcript:

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

Dan Redfield: Starting a dialogue, especially as a father, it is super important just having a talk with another dad who’s either walked that path himself or not. Sometimes just getting somebody who’s out of the circle that can at least just lend an ear. Sometimes the most therapeutic things I’ve done for me personally has just been to talk and just to get it out.

Tom Couch: That’s our guest this week, Dan Redfield. Dan is an Emmy-nominated filmmaker and the father of three children: Henry, Reagan and Ava, who very sadly passed away in 2021 from Infantile [00:01:00] Tay-Sachs, a rare inherited disease. We’ll hear how Dan and his wife Kristen have started Adventure for Ava, documenting and recording life stories for families of kids with terminal disease. That’s all on this Special Fathers Network Dad to Dad Podcast. Hear now the host of the Dad to Dad Podcast, and the founder of the Special Fathers Network, David Hirsch. 

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

Thank you to those who supported the 21st Century Dads Honor Ride 2023 campaign, which was a 3000 plus mile bicycle race from Oceanside, California to Annapolis, Maryland. I was one of the four racers and it took us seven days, 19 hours, and 10 minutes to go from coast to coast. Special thanks to the following donors for contributing $1,000 or more. In alphabetical order they are: Ina Burd, Kim Duchossois, Jim [00:02:00] Duran, Chaz Ebert, John Guido, Horizon Therapeutics, Scot Marcotte, Damien Navarro, Dick Reck, Barbara and Glenn Reed, Rotary Club of Chicago, Warren Rustand, Don Stadler, Nick Topicha-Dolny, and UBS Financial Services. If you’ve not already contributed, please do so by visiting 21stCenturyDads.org. Your tax-deductible contribution will help keep our programs free to all concerned. I would really appreciate your support. 

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. To find out more, go to 21stCenturyDads.org. So now let’s hear this fascinating conversation between Dan Redfield and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Dan Redfield of Anchorage, Alaska, who is an Emmy-nominated motion graphic artist and animator, as well as a father of three, including a daughter who passed away at six after [00:03:00] suffering from Infantile Tay-Sachs. Dan, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Dan Redfield: Thank you very much for having me. 

David Hirsch: You and your wife Kristen have been married for two years. And are the proud parents of three children: Henry, seven months; Reagan 3; and Ava, who passed away in November, 2021 at age four and a half after suffering from Infantile Tay-Sachs, a rare inherited genetic disease. Let’s start with some background. Where did you grow up? Tell me something about your family. 

Dan Redfield: Sure. So I was born in Landstuhl, Germany. Both my parents were army. Their last station after a few years was up in Alaska. So they got out of the military and then made a home for us. And that’s where I attended schooling up until high school. I had one sister and I was really close with her, kind of did everything together. I was your older big brother. I was very protective of her and we had a lot of fun. We were kind of independent. We had to make our own fun. But we were really [00:04:00] close and played hockey, played sports, enjoyed the outdoors. And my parents have since split and moved away. But Alaska’s always been my home and so I’ve stayed here. 

David Hirsch: Thanks for sharing. And in a previous conversation you mentioned that sadly your sister passed away. What was the backstory on that?

Dan Redfield: So my sister Amanda was 21 years old. She was a week shy of her 22nd birthday, and basically she was manic, bipolar, manic depressant, just like my mom. And it’s about 21 years old is when her particular case started to come up and she just made a few mistakes. Life mistakes. And she was just in a really dark place because of her chemical imbalance. And after a while being in a dark place, she just made some [00:05:00] bad decisions and they ended up finding her on the floor of a hotel. And so I don’t think it was intentional, but it was what was labeled as accidental suicide. 

David Hirsch: Wow. My heart really reaches out to you and your family. It must have been very difficult, even though it was quite a few years ago. 

Dan Redfield: Yeah, it was difficult because it was so sudden and unexpected. And even today, I still talk with my parents and try to connect the dots on exactly where her head was and what was going on from their perspective. So I think the hardest thing is just putting the pieces together and connecting the dots and getting answers. 

David Hirsch: Yeah. Thanks for sharing. Again, my heart reaches out to you and your family.

Dan Redfield: Yeah. Thank you.

David Hirsch: So out of curiosity what does your dad do for a living?

Dan Redfield: Currently my dad is semi-retired, so he’s enjoying the weather in Pensacola, Florida. [both chuckling] 

David Hirsch: Couldn’t be much different than Alaska.

Dan Redfield: [00:06:00] Yeah.

David Hirsch: And how would you describe your relationship with your dad?

Dan Redfield: My relationship with my dad is good. We don’t talk as much as I’d probably like and sometimes he’s not always there for me emotionally as much as I would like. And during some of the hard parts of my life, I think I wish he was there more, but that just wasn’t quite the case. He’s a good man. He has a lot of good qualities. 

David Hirsch: Yeah. It’s something I can relate to, Dan. I’m not proud of it, but I wasn’t close to my dad for most of our adult life. And when the pendulum swings one way, like the relationship that you’re describing, maybe what you’re doing, what I’ve done, is to try to overcompensate, right? Knowing a level of energy that gets created around a relationship that’s not what you anticipate and you wanna do something about that.

I think of it as breaking the cycle of father absence. And that doesn’t mean somebody who’s physically absent, but they could be emotionally or spiritually [00:07:00] absent as well. And I appreciate your openness and your authenticity about the situation and how it’s informed you to be a better husband, a better father, a better human being for that matter.

So when you think about the relationship with your dad, I think you had mentioned that he didn’t have a traditional upbringing. And I don’t want to make too much of it, but what was his backstory? 

Dan Redfield: So my dad was adopted at birth, which for the longest time I never really gave much of a thought to because his parents that adopted him were amazing people. My grandma and grandpa, they were just great people and they took him in as one of their own, and they gave him a really good life from my perspective. But I think as I’m now a dad, there’s certain things that you now look at. And especially having to deal with trauma in my life.

You are the person you are today because of your life experiences. And I [00:08:00] think maybe some of that distance that my dad has towards me could have stemmed from him being adopted. I’ve asked him about it and he said, no, that doesn’t really affect me. But that would affect me knowing that you were kinda left and you were abandoned. That would bother me. That would make me feel less valued. I think that would definitely play a part on me. And like you said, the pendulum swings and I definitely do overcompensate. And like in your TED Talk, you said the four things that make a great dad, it’s commitment, honesty, just being present, and love and patience. And I think those are the things that I try to give my kids every day and let them know that they’re loved and just trying to be there for them in all different ways. 

David Hirsch: So when you think about the relationship with your dad, was there an important lesson or two beyond what you’ve mentioned that comes to mind?[00:09:00] 

Dan Redfield: Yeah, there’s a few lessons. I think one of the best lessons he gave me was we were out in a remote area in Alaska for the 4th of July and we were gonna light off some fireworks. And we had a bag of fireworks. We were on our way to the beach to light ’em off, and a group of kids came up to us and they asked if they could buy some fireworks from us so that they could have their own little 4th of July fireworks thing. And my dad gave him a handful of fireworks and didn’t accept any money for it. And the kids walked away. And at the time I was young and I was like what, why did you do that for? Now we have less fireworks to shoot off. And I don’t remember what he said, but obviously the lesson stuck with me is to share and to be selfless in that manner and kind of spread the joy. Yeah, there’s lessons to be learned. He just shares some things differently. But that was a great lesson that I learned from him. 

David Hirsch: We talked a little bit about school and then career, and I’m wondering where did your career start and how has it informed what you’re doing now?

Dan Redfield: [00:10:00] So I started my career, basically I made a video for one of my friends who had passed, something that we could show at his memorial. And at the end of making it and then producing it and having it out there, just the feedback that I got from other people. It was just nice for them to be able to hear, see, just feel, the visuals, the audio in the movie and remember the good times with our friend. And I thought it was interesting to be able to create something from nothing and have something to not only share and show, but to affect. It was pretty powerful. And ever since then, I took whatever jobs I could. I was at a point in my life where I didn’t have kids, I didn’t have a mortgage, I didn’t have responsibilities really. So I said, if I’m gonna ever take this leap and quit my full-time job and pursue a passion that I feel this is it, right [00:11:00] now would be the time.

And so I was about 21 when I made that leap. And very grateful that I did because there was a lot of years of working and sacrificing and long hours. But that helped to lay the foundation for my career today. And it’s still, happily to say, it’s in filmmaking and storytelling. And so I still get to do what I set out to do and I still love it.

[Audio excerpt from ‘Granted’]

I love to adventure, and the filmmaking and the photography allow me to capture those moments and helps for me to share it with other people. My name’s Dan Redfield. And these are my photo ventures.

[End of audio excerpt]

David Hirsch: So you have two current focuses, one from a professional standpoint and the name of the company is Wake One, and you identify yourself as the creative director. So where did the name Wake One come from and what does Wake One do? 

Dan Redfield: One of my favorite stories. So Wake One comes from [00:12:00] my alarm clock that I had when I was 21 and grinding and learning how to become a filmmaker and a motion graphics artist. And I didn’t have any responsibilities. I was renting a one-bedroom room from my friend’s house. And in the room I had a bed, a computer, and an alarm clock. And the alarm clock had two settings on it, and the first one was labeled Wake 1, and that was set for 5:00 AM when I was ambitious and ready to take the bull by the horns and get up and learn, hone my craft, and get myself one step closer to my goal of being a filmmaker. And I don’t have that alarm clock anymore, but just the idea of get up, get moving. You can continue to sleep with your dreams or wake up and chase ’em. That’s what that represents to me. 

David Hirsch: Thanks for sharing. You said that one of the buttons said Wake 1. What did the other button say?

Dan Redfield: Oh, it was Wake 2 and if you slept through 1, you were pretty disappointed with yourself having to answer Wake 2. So you don’t [00:13:00] wanna be Wake 2. [both laughing]

David Hirsch: Okay. Thanks for sharing and then we’ll get into this a little bit later, but the other thing that you put a lot of time and energy, which I know is a passion for you, is this organization Adventure for Ava. And what does that organization do?

Dan Redfield: Adventure for Ava is a non-profit program, so we serve families with special needs. We take them out on a suitable and safe adventure, and then we document their experience and their story in a 10-minute film. We deliver the photos and then we share their story and film with the world in addition to a local premier in front of our audience in Alaska.

David Hirsch: Thanks for sharing. We’ll get into more of that in detail. So I’m curious to know how did you and Kristen meet? 

Dan Redfield: So Kristen and I met through mutual friends. I had split up with my previous relationship. I had spent eight or nine months just by myself and learning to be by myself. I’d spent a lot of time in the past in [00:14:00] long-term relationships and hadn’t really been single for very long, so I took a time out and just wanted to be single for eight or nine months. When I left that relationship I wrote down the things that person was bringing to the relationship and what I needed, and that wasn’t being fulfilled. And that kind of gave me the understanding that maybe this relationship isn’t working out. These are some of the things that I need and I’m not getting.

That was really great because now I could take that information and enter the dating pool again and know actually what I need in a partner. And Kristen runs a coffee shop and I love coffee. And so I just happened to [both laughing] swing by. And at the time I was drinking caramel macchiatos, which if you’re a coffee drinker, it’s not even coffee, it’s just a sugary dessert. But as our relationship matured, I matured and happy to say that I’m a straight black coffee drinker now. She turned me on to the [00:15:00] intricacies of good coffee. 

David Hirsch: I’m sure there was more to it than just the coffee though. 

Dan Redfield: No absolutely. You could just tell, anyone can tell when you meet her. She just has a glow that comes from the inside and she’s a very selfless person and she genuinely cares for me and she genuinely cares for the people that are in her inner circle. And she’s just a very kind person. 

David Hirsch: And do you have some shared mutual interest as well?

Dan Redfield: Yeah. We both love being outside. We both love hiking. We both love our family. Yeah, hiking and being in the outdoors is what kind of really solidified the relationship. Our first date was going out on a hike. Clearly she saw something in me that I was harmless and that I was trustworthy. 

David Hirsch: And when I think about hiking, your definition of hiking and my definition of hiking are probably a little bit different based on the geography. 

Dan Redfield: Yeah. I think hiking along with, like you were saying with your long distance bike riding, there’s something to be learned in a mental aspect about [00:16:00] that. Some of the things that I take away from hiking is just, you gotta take one step at a time. You take one day at a time, you take one step at a time. And if you take enough one steps at a time, you’re gonna get somewhere eventually. And it gets you to realize you’re capable of a lot more than you think. For a lot of people, whatever you think your max is, it’s probably only 50%. And hiking I feel like unlocks that perspective for me. You look up and you’re like, there’s no way. And then you just keep taking one step at a time and pretty soon you’re at the top looking down. And there’s that feeling of achievement, that you’ve grinded and now you’re at the top. And the top is always so pretty and it always makes it worth it. So there’s a lot of life lessons to be learned from hiking.

David Hirsch: Let’s talk about special needs first on a personal level and then beyond. And what was Ava’s [00:17:00] diagnosis and how did it come about? 

Dan Redfield: Ava’s diagnosis was Infantile Tay-Sachs, and it came about right around her first birthday. She wasn’t hitting milestones and her being our first kid, we weren’t quite in tune with exactly where those milestones should be. We just got to her one year checkup and she couldn’t pull herself up from a laying position. And so we knew something was wrong. We put her into physical therapy. We started doing testing and it wasn’t until we got an eye exam, we went and saw an optometrist because she wasn’t tracking us walking around the room. And her pupils weren’t dilating when they should have been. So there’s gotta be something going on with her eyes. So we brought her in to an optometrist. And real quickly, the optometrist said I discovered something that’s a telltale sign. We’re gonna need to do blood work and genetic testing to confirm, [00:18:00] but this is what I think it is.

And the blood test confirmed that it was Infantile Tay-Sachs. And before that diagnosis, I remember being like devastated because we had been given the blanket diagnosis of cerebral palsy. And I just had a hard time thinking about what her life is gonna be like, all the challenges she’s gonna have to face. And then we were hit with Tay-Sachs, which is fatal. And it was like, you go… we went from low to the abyss. 

David Hirsch: Yeah. It sounds like the initial expectation, as severe as cerebral palsy might be, paled in comparison to learning what the actual diagnosis is with Infantile Tay-Sachs. So I imagine you had to climb the steep part of the learning curve and come up to speed on what that is, how does it come about, [00:19:00] and what do you do from here, especially if it’s considered to be fatal.

Dan Redfield: So there’s three different types of Tay-Sachs. There’s infantile, juvenile, and late onset. Speaking directly to the Infantile Tay-Sachs, life expectancy is usually three to five. 

David Hirsch: So the worst type, based on what you just said, is the diagnosis of Infantile Tay-Sachs because maybe like ALS, Infantile ALS, the life expectancy is very short.

Dan Redfield: Yeah. So by the time we got that diagnosis, we had to bring ourselves up to speed with how do we care for her, how do we improve whatever we can, and then how do we keep her comfortable and give her the best life that we can in such a short period of time. 

David Hirsch: Was there any meaningful advice you got early on that helped put that all in perspective?

Dan Redfield: Yeah, so we have a support group, the National Tay-Sachs and Allied Diseases. There’s members within that community that gave us a lot of advice [00:20:00] on both the medical care-taking side of things and then in terms of the mental side of things. I think just seeing people on the other side, people that had lost a kid and were still together as parents, as a family, and that were still functioning people. They hadn’t fallen into depression or they were still there. And that was huge to see, at least for me.

David Hirsch: Yeah. Thank God for organizations like that. And then being able to connect with other parents. It reminds me of the work that we do with the Special Fathers Network, which is trying to connect dads with other dads who have been there and done that. And you don’t know what you don’t know. And one of the challenges that men have, probably less so than women, is that we’re the gender that doesn’t pull over and ask for directions when we’re lost. And we’re talking about something pretty modest, like how do you get from point A to point B in your vehicle. If you take that same problem-solving approach and you apply it to being a [00:21:00] parent of a child with special needs – you’re gonna try to figure it out on your own – you’re setting yourself up for disappointment, right? And you’re not gonna be able to help your child reach their full potential if you’re gonna try to figure it out yourself. So the fact that these organizations exist and there are parents out there, dads in our case, willing to make themselves available to lend some insights on what the journey is all about, not from a medical standpoint or maybe a legal standpoint – that’s what doctors and lawyers are for – but just from one person to another. And thank you for sharing. And it’s one of those clubs that you don’t want to be a member of, right? If you do find yourself in that situation, maybe there’s some lessons to be learned about helping the next person up the ladder, if you will. 

Dan Redfield: Yeah, I think if I could go back and if there was any regret that I did have, it was feeling that I had to bear that responsibility of being the anchor of the family. When my [00:22:00] wife did go to work in the mornings, I remember that was like my time to purge and I would just cry. And after Ava’s diagnosis for the first three months, I cried I think every day. And I think my regret would be not reaching out to maybe one of the dads in the group directly. I found my way and I think I found my way mostly through my wife who was asking those questions. So she was the one asking for directions and I would just pull that feedback from her. [laughs]

David Hirsch: You were drafting, right? 

Dan Redfield: Yeah, exactly. 

David Hirsch: When you look back, were there some other important decisions you made as parents raising a child with these life-threatening challenges? 

Dan Redfield: One key decision that was really important for us was her G-tube. There are some families that just allow their kids to… they know the path that they’re going on and they just don’t want to do any intervention, which is fine. But our decision was we wanted to keep [00:23:00] Ava happy and healthy for as long as she was happy and healthy. And there were certain lines that we had drawn. But if we can get food in her and keep her healthy and happy by doing that, we gained another two and a half years of her life and they were meaningful years. So that was a big decision that we made, and I’m happy that we did.

David Hirsch: Yeah. Thanks for sharing. That is a difficult decision, at least as I’ve had it described by others. It’s not a right or a wrong, right? It’s a personal choice. And you have to respect parents who go down one path versus the other. And until you’re there, you don’t know. When you get to that fork in the road and you have to make some of these important decisions in some cases as it relates to the medical care that’s available. So thanks for sharing.

Dan Redfield: Yeah. One of the doctors had said something that really stuck with me and it was, are you extending a good life or prolonging a bad one? So those words always stuck [00:24:00] with and helped to inform where we would draw the line in terms of what we were going to do for Ava.

David Hirsch: Yeah. That’s a very profound statement. Extending a good life or prolonging a bad one. I don’t think I’ll ever forget that. 

Dan Redfield: Yeah, because Ava couldn’t talk. As her diagnosis progressed, it shuts down your motor functions, your nervous system. So she became paralyzed, couldn’t eat, couldn’t speak. So you really had to become tuned in to her communication style that was very subtle to know if she was happy or hurting or whatever it was. 

David Hirsch: Yeah. Thanks for sharing. What impact has Ava’s situation had on your marriage or your extended family for that matter? 

Dan Redfield: The impact that it had for our marriage. I think it brought Kristen and I closer together. It forced us to really be a team. Not [00:25:00] that we weren’t already, but it just reinforced those ideas. Thankfully, her and I are on the same page when it comes to how much intervention we were going to do, which made things a lot easier. I think it strengthened our relationship. It’s just something that we’ll always share together. 

David Hirsch: And your extended family? 

Dan Redfield: I think my dad had a hard time with it because of my sister. So my father only saw Ava twice in her whole life. I kind of wish it was different. I wish that he would’ve wanted to see Ava more. But that just wasn’t the case. And I think it has something to do with my sister. Like he just, he had a hard time with that and I don’t think he wanted to go through that again, which I can understand, but at the same time, from my perspective, it would’ve been nice to have his support more. As fathers, we are the anchor [00:26:00] of the family. But especially being in Alaska, especially caring for a child with special needs, it is isolating for everybody. Being in Alaska for everybody, being in a special needs community, and then even for being the dad who’s taken the weight of the situation and put it on his shoulders. My personal feelings are, if I’m trying to be the anchor of this family, who do I lean on when I need to? And I wish it would’ve been my father more, but that just wasn’t the situation.

David Hirsch: Yeah. Thank you for being open and authentic. So a message to the grandfathers listening out there, we still have a role, right? As a young grandfather myself, right? We have a four and a one year old grandson and granddaughter. And I think the message that you’re sharing really resonates with me, which is if you see one of your kids or one of their spouses struggling, err on the side of engaging. Don’t be [00:27:00] distant. If they don’t want the help, they’ll tell you. They’ll push you away. And I think we can all learn from the experience that you were just sharing. So thanks again. 

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey, will receive a Great Dad Coin. Thank you. Now back to the conversation. 

David Hirsch: Let’s talk a little bit about your experience beyond your personal experience. You’ve done some film work and then you’ve created a not-for-profit and there’s some overlap there. And one of the films that you created is entitled [00:28:00] Granted. And I’m wondering what’s the backstory on that and what was that project all about?

Dan Redfield: Yeah, so the backstory of that was Ava qualified for Make-A-Wish. And originally we were going to take her to Maui because Ava has history there and because she’s blind, getting her other senses excited, her sensations, her feelings, wind in the hair, sun on the face, those types of things were appealing to us and I think to her. But that was during COVID, so we couldn’t fly. So just in passing, it just happened to be that one of the Make-A-Wish grantees was talking with Kristen and she said what else do you guys plan on doing this summer? And she said we plan on getting a camper and doing some camping. And the Make-A-Wish folks took that and ran with it and said what if we can get you a camper as part of her wish? And we’re like sure, that would be great. And Make-a-Wish [00:29:00] and Great Alaskan Holidays partnered up to deliver an amazing trailer that had everything that we needed to take Ava out.

And as her life was shortening, I knew that as much footage as I can get of her, it’s not gonna hurt. I just started filming our adventures. We went on 12 adventures that summer and then more the next summer using the trailer. And over the summer of 2020, I just basically captured all of our adventures and then later put together the film. So it documents Ava’s Make-a-Wish journey. But then it also captures footage of her and her sister Reagan, so that when Reagan gets older, she gets to have something to look back on and remember just an epic summer with her sister.

[Audio excerpt from ‘Granted’]

It’s meant a lot to Kristen. Having the ability to get out and go camping and spending time with the family, I think has been [00:30:00] very special for her. Sitting around the campfire and just warming up and having s’mores and hot dogs, It’s my favorite, just being together as a family.

[End of audio excerpt]

David Hirsch: Wow. It is interesting how the Make-A-Wish Foundation works. What an amazing longer-term experience that was. Was it just you filming or did you actually have a film crew when you were doing the recordings that you made reference to?

Dan Redfield: No, it was just me, which looking back, I don’t know how it got filmed because you’re taking care of one newborn Ava, and then hooking up the trailer, dragging it all over creation and then getting there, setting up, pulling out the camera, filming everything. There was pictures of me during that time period, and I look weathered, and you can tell. You can understand why, it was just just a lot [00:31:00] going on. But I’m glad that I did. It was hard during that time, but I’m glad. I’m just glad that we were able to make it happen because when Reagan gets older here, another three or four years or so, when she gets seven years old or so, we will show the film to her for the first time and I’m interested to see how she’ll react to it and just being able to see her sister.

David Hirsch: Yeah. That’s very amazing. So how many miles did you put on the trailer? And where were some of the places that you visited? 

Dan Redfield: Oh, we probably put a couple thousand miles, I wanna say. Because everything in Alaska’s big, so you know, it’s two hour minimum to get anywhere. Ava’s favorite spot was Seward, which is two and a half hours south of us. She loves it because right there on the water, you get the salty smell from the ocean. It’s usually breezy. [00:32:00] Breeze in her hair, sun, campfires. It just had a lot of things that I think excited her senses, and you could tell she was excited because she would either start drooling uncontrollably, she would start cooing, or she would just get really excited and then pass out. So she would just like go to sleep. So it was like, you knew she was excited when she was sleeping because she was just so kinda ramped up that she had to come back down and take a nap. 

David Hirsch: Yeah. Thanks for sharing. That’s very, very powerful. And as somebody who has watched the documentary, which was made into a one-hour long PBS documentary that aired in March of 2023, I was quite moved by it.

Dan Redfield: Thank you. 

David Hirsch: Thank you for pushing yourself to the limits, like you were describing. Doing all the things you’re doing as a young dad, as a husband with these two young girls, the trailer, and all the things that go on [00:33:00] behind the scenes, let alone trying to capture the moment, if you will, beyond what most people might be taking a couple photos, maybe a couple videos on their iPhone.

Dan Redfield: So there’s there’s one funny story about that. During the filming of this, like I said, I had to do everything – driving the trailer, parking it, setting everything up, getting the kids right, getting Ava, and then filming this whole thing. And there’s a shot in the film that’s on the ground of me filming Kristen’s dad cooking bacon outside on the trailer. And then the next cut is a drone shot overhead of him cooking the bacon. And bacon doesn’t take that long to cook, right? So the fact that we got a handheld shot on the ground with a camera, took that shot, took it down, grabbed the drone, popped it in the air, flew it overhead, set up the shot and everything, still impresses me if I can say that, just because, bacon doesn’t take [00:34:00] but a couple minutes to cook. And just me getting those two shots back to back makes me tired, but also excited that, yeah, I gave it 100%. 

David Hirsch: Yeah. I do want to say, because I did have a chance to watch the documentary, you have a gift and it’s a very refined gift, your storytelling ability. And one of the things I was taken by was the scenic nature of the backdrop for this movie, being all over Alaska like you described, and what a powerful visual impact that is. And then, like you’d said, it wasn’t all from a handheld, but you have a lot of drone photography which obviously you have a gift for. And just the scenery and the wildlife, it was really a treat. So thanks again.

Dan Redfield: Yeah, thank you.

David Hirsch: So you’ve pushed yourself, which is just beyond my imagination, to not just create this [00:35:00] documentary for Ava’s memory, for Reagan’s benefit, your family’s benefit on a longer term basis, but you’ve created something called Adventure for Ava. And this is the not-for-profit that you made reference to previously, and you’ve created a series, a growing list of short documentaries. So what’s the backstory on the not-for-profit and how has it evolved? 

Dan Redfield: So the idea came from my time where I do my deep thinking, which unfortunately is between two and three in the morning when I wake up and I can’t go back to sleep. And one of the nights a problem that I was trying to solve is how do I channel this energy with Ava that’s difficult and turn it into something that’s positive. And I just took inventory of what I had professionally – the cameras, the equipment, the expertise, and personally the reason, the backstory of capturing [00:36:00] our best memories with Ava being outside. It just clicked one day. And our best memories with Ava are outside doing something different in a place that’s new and doing it together as a family. And the idea just came to be why don’t we just do that for other families? Take them out on a safe adventure. Get them to break the mold of their everyday therapies, their everyday grind, do something different, and then capture it and have a time capsule for them to kinda look back and enjoy that day and just to see where they were at that point in time. 

The very first adventure, I had reached out to our physical therapist and I said, do you know of anybody who might fit that, that might wanna do that? And she goes, yeah. So I contacted the family and I said, hey, if you could go on any adventure in a day, what would it be? And she said, we want to take a flight to Lake Clark, Alaska and go on a boat and [00:37:00] watch the bears. And in Alaska, that means a five-hour drive to Homer, a one-hour flight from Homer to Lake Clark, jump on a pontoon boat, go out on the lake to see the bears. When I heard the bill for that, I think it was around $6,000 or $7,000. And all I thought about was like, what have I gotten myself into? This is an enormous mistake. But thankfully the company donated their time and resources and we were able to get a little bit of seed funding to make it happen. And to date, that’s been the most expensive adventure. But we’ve been able to take, at the end of this year, it will be 15 families that we’ve been able to take out on adventures.

[Audio excerpt from ‘Granted’]

I hope that they realize how beautiful they are and how their kid and their family impacts others and for the world to see that these kids can do big things when given the opportunity.

I don’t think I ever seen him have this much [00:38:00] fun in a long time.

Just even being out of the house and seeing something different.

That’s something that we couldn’t have done anywhere else in any other way.

That was really neat to just have a day to play.

It was a great experience, not only for Cade but for a bonding experience for him and his brother.

I was really glad that we all gotta see as a family.

We don’t have a family picture. That’s always been our family in pieces.

When she’s older, that’ll be nice for her to have the memories.

It was just such a special time, such a special day for him.

Seeing my son, and he’s going fast and feeling like a superstar. Thank you that we could have this moment.

[End of audio excerpt]

David Hirsch: I’m wondering how do people apply for, submit an application to become one of these families? 

Dan Redfield: So on the website, AvasStory.org, there’s a tab where you can either sign up your family or you can nominate another family. [00:39:00] So in that intake form, it has who you’d like to nominate or the particulars on your own family. It gives us a little bit of insight into who you are as a family and then what you might possibly want to do for your adventure. And then from there, there’s a quick screening process from our family coordinator, and then we’ll reach out and figure out what’s a good adventure for your family.

David Hirsch: And how many of these do you budget to do each year?

Dan Redfield: So currently we budget for four, but if we can do… if there are certain instances that come up, if it’s a time sensitive case or something, then we’re happy to extend to five or even more.

David Hirsch: Okay, I’m super excited because this is all being done in Ava’s memory. Her life continues to have an impact well beyond her short period of time on earth. And I think that’s very profound. So I’m thinking about advice and I’m [00:40:00] wondering what advice would you share with a parent or specifically a dad, including dads raising a child with special needs.

Dan Redfield: I think it’s just reaching out to the other parents. And you don’t need to have any set list of questions ready to go. It doesn’t have to be anything formal. Starting a dialogue, especially as a father, it’s super important just because I think we tend to carry a lot more weight. And we don’t need to. But if you are gonna carry that weight it’s best to split the load, so to speak. And I think that’s accomplished just by having a talk with another dad who’s either walked that path himself or not. Sometimes just getting somebody who’s out of the circle that can at least just lend an ear. Sometimes the most therapeutic things I’ve done for me personally has just been to talk and just to get it out. And even to Josh, one of my friends [00:41:00] who isn’t a special needs dad, but just somebody that can be there and listen. 

David Hirsch: What I heard you say, just paraphrasing, is err on the side of engaging, err on the side of communicating.

Dan Redfield: Yeah, it doesn’t have to be much thought put into it. Just open a dialogue and just start talking. It’s very therapeutic and I think my biggest regret going through the situation with Ava is that I didn’t reach out and start a dialogue more with some of the dads. 

David Hirsch: Speaking of which, why have you agreed to be a mentor father as part of the Special Fathers Network?

Dan Redfield: I think that’s important for me because one of the biggest things that helped me through my time raising our child with a special need is just seeing the other families that have made it to the other side. Just showing up and showing people that if I can survive it, you can survive it. [00:42:00] And there was a lot of things that helped us along the way that were given to us by other families. And I think it’s only right to pass it on to the next generation. 

David Hirsch: We’re thrilled to have you. Thank you so much for being involved. Is there anything else you’d like to say before we wrap up?

Dan Redfield: I think just thank you to the other men who have been part of the podcast. Since I’ve met you, I’ve went back and looked at some of the other podcasts and I think just the honesty and the vulnerability. I think that there’s a shift going on right now where I think it’s becoming more, not acceptable, but I think men feel more comfortable about their mental health and about their emotions, and I think that’s a great thing and I think we need to continue to exercise that and we need to continue to support each other and to be vulnerable because that vulnerability, I think it helps not only the person that’s going through [00:43:00] it, but also people on the other end. 

David Hirsch: Yeah. What I’d like to add is that I think previously – and I’m a generation ahead of you, Dan – vulnerability was perceived to be a weakness, right? You don’t wanna show a weakness, right? That’s just part of how men have been raised traditionally, and that’s just not in our society but I think universally. And I think if you can get beyond that and understand that vulnerability is actually a strength, right? The willingness to ask for help and reach out to others is actually a strength. That’s not a weakness, right? Then it’s mission accomplished, right? Because hopefully that’s the way we’re gonna raise our children, our sons as well as daughters, right? To not try to figure it out all on their own. 

Dan Redfield: Yeah, you can suffer silently and pass whatever toxicity is brewing up inside of you onto your kids, onto your relationship, onto your job. Or you can [00:44:00] man up and say, hey, I need a little bit of help. I don’t think there’s anything wrong with that. Because it’s not only gonna affect you for the better, but it’s going to affect all the people around you for the better. 

David Hirsch: Absolutely.

Dan Redfield: That’s why you gotta put your own oxygen mask on first, right?

David Hirsch: Yep. It’s pretty basic, but so true. So if somebody wants to learn about your work, your films, or to contact you, what’s the best way to do that? 

Dan Redfield: So professionally, my website, danredfield.com. In terms of the special needs families, it’s avasstory.org. So even some of our out-of-state families who would like to find their way up to Alaska and go on an adventure, they’re more than welcome to sign up and we’re always very honored and privileged to be able to come into their inner circles and tell their story and take ’em out on a fun adventure. 

David Hirsch: Thank you. We’ll be sure to include that in the show notes so it’ll make it as easy as possible for somebody to get a hold of you. Dan, thank you for your time and many insights. [00:45:00] As a reminder, Dan is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org. 

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

Dan Redfield: Thank you very much.

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 [00:46:00] 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.

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.[00:47:00]