A BRIEF INTRODUCTION
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
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.
I say especially like how, how noble of us not to gossip about real people.
We're doing everyone focused on the present people.
Precisely. I appreciate that perspective. What is your favorite smell?
Oh, this is so weird. But I love the smell of both of my kid’s heads. Even like out of the shower or like right before and needing a bath. It doesn't matter. But just like when I kissed the top of their head just that like, I don't know it, maybe it just brings back that newborn smell from them from both of them. But I just love it. It brings back all of the joy.
Mm-hmm. Oh, I agree. And sometimes I prefer the ripe smells. My nurses must think I'm crazy, cuz I'm like, Let me smell it stinky armor that stinky hair. It's them. I don't know, it's so weird, but it's them. And I love it.
It's so true. And oh, and I'll also add like an honorable mention, which in for the dog lovers will understand this, I hope. But that is my dog's paws smell like, they still smell like she's a puppy. She's 11 years old. And her paws still smell like when we first brought her home. And I just, I love that. So I guess it's those smells that like, bring me those memories of when my dependents were first brought into my life.
You also just admitted that you smell your dog's paws?
Oh, totally. It's weird, we've already crossed the threshold.
Good, good. I'm glad.
What is one thing that you're presently grateful for?
Well, other than the opportunity to be doing this on cash and being your featured guest. And I guess part of that gratefulness is that I am excited to get to hear from these people that have played such an important part in my life. But I really have not been able to sit down and have a conversation like this with them where I get these perspectives, you know, and reflection opportunities. So I'm very grateful for the opportunity to do that. And not just have it be Kristyn, asking weird questions and inopportune times.
I love that. There is, you know, I will say from my own experience doing this last season, there is a very therapeutic and healing quality to finally having the opportunity to have these conversations. These conversations that you can't have in the clinic setting this opportunity that we get to know the human behind the career, behind the person that is making these really big decisions in your life.
So I'm excited for you.
Yay, me too!
What comes to mind when I asked you to recall a memory or a moment that brings you great joy.
So there are so many moments that have brought me joy and I have been so fortunate in my life to have so much joy. But I think if I had to like put up a greatest-hit, you know of all time, it would be bringing Ozzie my youngest, home from the hospital to meet Luke, my oldest. So Ozzie was born in this pandemic. So Luke was not allowed to go to the hospital to meet Ozzie. And when we brought Ozzie home, my parents had Luke and Luke was staying with them. And so they brought Luke home and just seeing Luke run through the front door and come and see this tiny human-like, gosh, they're just so small, right? And you always forget how small they are. And see this little human in a boppy that used to be in mom's belly and he, you know, was able to just be amazed by Ozzie and by the fact that he was a big brother and I remember specifically, him leaning over and kissing Ozzie's forehead. And I just, I it was one of those, you know, snapshot-like, I really hope my brain can take this mental picture and never let it go. So that was that spark of joy that I don't think I'll ever forget.
Isn't that such a beautiful automatic reaction out of him, too?
Yes. And don't get me wrong, like we have had some lovely tantrums and brotherly disputes since then. So it's not. We see the full gamut, but man, it was so cool just to see that initial instinctive response from Luke as a big brother.
Oh, I love that! If you don't mind me asking, How did you and your husband Kevin meet?
Sure. I met my husband when I was 18. And my first week of freshman year of college, we both went to a small engineering school. I met him at his fraternity party, he was a sophomore, so an older man, right. And that was my very first party I had ever attended. Ever. I'll point back to the NASA flight suit to explain that. But you know, it was a whole new world for me socially. Everyone having a college party, and so he approached me and introduced himself, and I just kind of dismissed him as one of those college frat guys, and that I would never come back to this fraternity house again. And over the next two years or so we became better friends and had a couple of classes together. And I thought he was admittedly pretty cute because he had kind of that Emo, like, bleached hair swept to the side, and he had a lip ring and a tattoo and, you know, so then a mutual friend.
You had a type...I love it.
Oh, oh, yeah, that was 100% my type. So then, a mutual friend of ours invited me to sing in their fraternity cover band for a Greek sing competition. So I'll preface and give so much disclaimer to that, that this was again a small engineering school's fraternity cover band. So I am by no means anywhere near a professional singer, anything like that. I believe the invitation from my friend was we need a chick singer for some of our songs. So I came on board. And Kevin was the bass player in this band. And I think that was kind of the beginning of the end for me. So
This rest is history.
Oh my goodness!!
What's your name?
Luke Steven Newbern.
How old are you?
And how old will you be at your next birthday?
What things do you think you'll be able to do when you turn five?
I don't know.
What things can you do right now?
Play? Fly a airplane!
Fly an airplane?
The whole inspiration, the center of Season Two is about Luke.
Do you want to tell me about I'm ready to hear so much about him. So I've got a list of questions. If you're ready for it.
I would love it. Yes. So his name is Luke. And not short for anything. And actually, I can tell you the backstory of it if that might be interesting.
What's the backstory?
So Luke is actually a tribute to my husband, Kevin's grandma, who he called grandma Luke. And that's what she went by. And she actually was the reason that my father-in-law was adopted. So she really was a wonderful woman, a wonderful mom to my father-in-law, and just a really special and strong woman in Kevin's life. And so I thought that was a great name, a great kind of secret tribute there. And then also, St. Luke is the patron saint for doctors and scientists. So I really...all the stars aligned.
Yes, they did! Goosebumps, again! How many times are you gonna do this to me in this interview?
Oh I have lots of goosebump answers prepared, up my sleeve. Don't worry.
What is Luke's favorite activity?
I'm going to say maybe a tie and it's going to be between water - anything with water, swimming, splash pads, even just like a hose with my thumb on the end is a great activity for Luke. That, and building and learning about pieces that make a machine. So cars, trains, our Roomba vacuum has been taken apart and put back together again by Luke's request. So...
Oh my goodness.
He loves pieces and parts to machines for sure.
That is awesome. I am curious to know, is music a big part of Luke's life?
So, it is. We made sure that music was a part of Luke's life. And actually, I would say, it was such a major part of his newborn and baby life. That, you know, and you know this all too well, that when you have a newborn in the hospital, and they're hooked up to all of their machines, you can't really even touch them, let alone hold them, or walk them around, or bring comfort to them through touch. And so a lot of Luke's newborn and baby life, our connection, and my comfort was brought to him through music. I remember singing to him and humming to him in the hospital and through the nights through his baby-hood. Now that he has his own ideas and opinions, he still loves music, but he picks his own songs and doesn't really want to listen to mom and dad's old music.
Does Luke have any pets?
Oh, he sure does. So he has a dog named Charlotte. I say he has a dog because he has stolen her from us. We rescued Charlotte in 2012 when she was a year and a half old. Even though she spent way more time with me and with Kevin, she is absolutely Luke's dog and best friend if you ask Luke. So she has an 80-pound pitbull mix and pillow and playmate and just an awesome companion.
Oh, that's usually how it happens too, right? What's ours is theirs suddenly?
It's so true.
Our bodies, our pets?
Yes, exactly. And she so willingly accepted that change too. I was like, "Wait a second. Where's the loyalty? I'm feeding you." But can't beat that love.
She liked the smell of his head better than yours.
I certainly cannot blamer her there.
That's awesome. I love that. What things make Luke happy.
So, Luke loves and gets so excited to be around the people that he loves. He's very social in that way. He's very independent. And can you know entertain himself, but he gets so excited when he gets to see or when he knows he gets to see Nana and Papa or Momo and Bobo or his aunt and uncle and, or his little friends which are comprised of our friend’s kids now. So he, he just gets so excited and loves the the thought of being around the people he loves.
Does Luke ever get sassy or annoyed? And if so, what is the typical cause?
Oh, did I mention that Luke has a 14-month-old brother? (laughter from both) So yes, Luke absolutely gets sassy and annoyed. And I would say, you know, going from all of the toys in the house being his toys, to now having an energetic and highly mobile and not very self-aware, younger brother who loves everything that Luke loves - it has been a point of annoyance, sometimes, for Luke. So we are working on patience currently in our household. It's so amazing to see this play out because I'm an only child so I never experienced any of the sibling rivalry or bonding. And to see kind of both sides of that firsthand has been so so fun. And I do I see Luke kind of he battles it out. You can just see the wheels turning where he just really doesn't want Ozzie to take that toy. And it's very frustrating because of course he needs all of the pieces of the train track all of the time. And then he's kind of battling "Oh, maybe I should share I know mom says I should share," and he tries. So we are facing some of those obstacles right now.
I have a sibling. And even though we were seven years apart, I totally feel his pain. I totally feel his pain.
Probably even more so, you had more time as an only child.
That is true. It does stem from so long being the only child, everything being yours, including your parents not having to share that. It's, it's a big change. Yeah, I will say as a person who had a lot of hospitalizations, and just my own medical issues growing up, so much of the attention was on me during those seven years. And by the time my sister was born, I still had a trach but my health was relatively stable at that point with the exception of like the occasional hospitalization. So she came around, and it was just like, the Royal boot because suddenly, I was not needing as much therefore I wasn't receiving as much. And oh, look at this cute, healthy baby. And I think intrinsically, I knew like, as I watched her growing - Oh, I loved it. She was the cutest thing ever. course.
But there's also like this part where I'm like, gosh, this is so much easier for her.
So that's been an interesting thing that I know, we'll probably get to that later. But I wonder if some of that is going on with Luke too.
I mean, I think you hit it so spot on. And I wonder too, so Luke was just over three when Ozzie was born. So he didn't have, you know, certainly the maturity that you did when you were first graced with your little sister.
That is very nice of you to say, but I don't know how much maturity was really there.
I love that. Yes, he so, but he has enough awareness. And he did at the time, I think, to see some of that too. And, and now that Ozzie is hitting a lot of these milestones, and, you know, being healthy is, it's just like, it's like, you're starting halfway through the race. You know? Everything comes so easily to him and all these milestones, they just happen for him. So I'm sure that Luke sees that. And he, you know, probably internalizes it. For the most part, He's not one to outwardly complain really about anything like that. But he's also very aware and very intuitive, so I'm sure he sees some of that.
What is your brother's name?
What's his big full name?
Oscar Kevin, and then what?
What's the last name?
Yeah. How old was Ozzie?
One? What kind of things does Ozzie do?
(laughter) He smashes stuff. Do you love Ozzy?
Now that we've all had a chance to get to know more about Kristyn, Kevin, Luke, and Ozzie; next week, we will learn more about Kristyn's entry into life as a heart-mom. In this episode, we learn more about the ever-evolving complexities that come with the diagnosis of a newly discovered rare genetic condition.
If you love the artwork for season two, head on over to our online shop, where you can find a variety of merch. There are so many options to pick from, but my personal favorites are the tri-blend T-shirts and the loose medium-weight sweatshirts.
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If you can relate to this content, and you're interested in guest hosting a season of your own, don't hesitate to reach out to me, you can reach me on the website at www.atypicaltruth.org. Or you can also find me Atypical Truth on Facebook and Instagram.
The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collective Amiina. The cover art for Atypical Truth was designed by Eric McJilton.