A BRIEF INTRODUCTION
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
Social Media Updates
Meet Kristyn and Luke - lovers of space, music, Kevin, Ozzie, and a very special dog named Charlotte. We will be spending an entire season traveling through the story of Kristyn and Luke’s life, but first, I felt that we deserved an episode dedicated to getting to know the Newbern Family.
For those of you who have been with me since season one, you will know that I like opening every conversation with a set of random personal questions. I call these questions the “humanizing questions” because they allow us to connect simply as people - complete with our unique set of likes and dislikes.
These were initially designed to be answered rapidly, but I quickly learned that there was always a story to accompany the brief answer - and it is in that story where the real magic of connection happens.
Today, we will be spending our time learning more about the Newbern family - and the origin stories that lend to their rapid-fire answers.
What is the best color?
Why is brown the best color?
Because it's my favorite!
Why is it your favorite?
Because it has all of that mixed up inside!
Oh, that's a good point. What is your favorite game to play?
Mario Chase that's a good choice. Do you like when it's sunny or rainy?
Rainy! Where we get to jump up and down in muddy puddles!
I love jumping up and down in muddy puddles.
What's your favorite thing to do on a sunny day?
Play and dance and jump!
Welcome to Season Two of Atypical Truth. I'm your host, Erica Jolene. Humans are storytelling beings. I created this podcast to amplify the stories of my community, the community of people who live with rare diseases, disabilities, and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear the stories from family, friends and professionals who advocate with us.
My guest-host for this season is Kristyn Newbern. Kristyn is a fellow medical mom to her son Luke, who was born with congenital heart defects and later diagnosed with a rare genetic disorder called Noonan Syndrome. Throughout this season, we have the special invitation of getting to know Kristyn, as she shares with us about her life as a rare-disease heart-mom. This isn't just a story about a heart-mom. No. This is the story about how a group of people and professionals helped to shape the Newbern's medically complex journey. Throughout this story, you will hear conversations with exceptional people who've made up Luke's tribe. From specialists, friends, and family; we get to learn more about their own life experiences, and how their paths have crossed with Luke's.
For those of you who have been here since Season One, you will know that I like opening every conversation with a set of random personal questions. I call these questions the "humanizing questions," because they allow us this opportunity to connect simply as people, complete with our unique set of likes and dislikes. These were initially designed to be answered rapidly, but I quickly learned that there was always a story to accompany the brief answer. And it is in that story, where the real magic of connection happens. Because we will be spending an entire season traveling through the story of Kristyn and Luke's life, I felt that we deserved an episode dedicated to getting to know each of them a little bit better. Today, we will be spending our time learning more about Kristyn and Luke, and the stories behind their seemingly simple answers to those humanizing questions.
Thank you for joining me, this is so exciting.
Yay! No one is more excited than me, I assure you. I have been so nervous in such a good way to do this. And I think that, I don't know, it's just such an exciting opportunity. So thank you for inviting me to be your first featured guest.
You're too kind. I mean, this is a really big time commitment. I shouldn't say, that it's really a big commitment. Not only is it time-intensive, but it's also definitely outside the comfort zone of so many people. So I'm so thrilled that you're willing to get on here, in this very public and vulnerable manner, and share your story with us. So thank you.
Oh, it's my pleasure. And if I can reach anyone out there who is affected by anything I'm going through or maybe what they're going through just affects them in the same way then it's a success for sure.
I agree. So Kristin, what is one word that would most accurately describe you?
Okay, so starting off with a tough one here.
Summarize my whole self in a word.
So I have a few adjectives that come to mind but some of them seem a little too presumptuous, like, like resilient or passionate so maybe I will channel one of my favorite musicals Hamilton and go with "Nonstop."
Wow. Oh, what couldn't build up my goodness I didn't know where you are going with that. You know I'm sitting here thinking, "What is she gonna say ?"I love it. I really appreciate the Hamilton reference.
I also have come to know you as being just like so very inviting. You are very inviting soul like you just radiate warmth and friendship. I agree, nonstop is definitely you but also like, inviting I think too. There I am interjecting my own opinion. Sorry.
I so appreciate that.
My next question is a little bit easier, I hope. What did you want to be when you grew up?
So an astronaut? Of course, I I'm sure I think every kid goes through a space phase. For me, I think it was, I figured out that I wanted to be an astronaut - and I'm not an astronaut, by the way, like it didn't. So, when I was a kid, though, I decided that I wanted to be an astronaut after going to Space Camp in Huntsville, Alabama. I was literally the kid who wore her flight suit get-up, like the whole, you know, one-piece zip-up flight suit the entire week, you know, probably thinking that there were NASA scouts, there like ready to recruit the most committed fifth-grader at camp. So, so I was there and I was ready. Ready to join the force. So that right resonates.
You were nonstop, you were nonstop from the get-go?
Yeah. Total nerd. Yes. Yeah, that was that's a good summary of my childhood right there.
Oh, I wish I wish I would have known you as a kid, I think we would have really gotten along. So were you into like Star Wars or Star Trek or anything like that?
You know, I saw all the Star Wars movies. And I was kind of raised in that world from my parents. But I, you know, wasn't like a, you know, wasn't like a what? A Trekkie or anything like that. It was very much more the like, the literal science behind space.
If that makes sense.
It does. Yeah. I do have to, you know, make sure that I discern that though because there are some people who are in it, because they have that kind of fanciful idea of what space is like. And then there's the people who want to go to the moon, collect the samples themselves, bring it back to Earth and study it. So...
Yes, yes, that I was the ladder was ready to collect and study moon rocks, that would be great.
What is a guilty pleasure of yours?
Oh, man, I love to binge stream shows. You know, it's just been over the years, especially over the last like four and a half years. I just find myself, if I can't sleep, or if you know, Kevin, and I get an hour or so where we're alone and everyone's asleep upstairs, then... We probably shouldn't be like cleaning the house, or we probably should be being more productive. But like, just having that show to relate to or gossip about these pretend characters, and what in the world are they doing, I think that's been a huge release and way for us to just kind of have an outlet that we share that we don't have to work at. So that would be a guilty pleasure.
There's definitely therapeutic value in that. I can relate to that. There's also a sense of comfort to you know, I've definitely seen some things kind of be generated online about people turning to their comfort shows, especially during COVID when things were really stressful and needing that comfort comedy or that comfort true crime, whatever it is. I agree I, we do the same thing in our house.
And it's still bonding even if we are bonding over characters that do not exist in real life.