Growing Together Through Thick and Thin
Hosted by Erica Jolene and Kristyn Newbern, with friends Lauren Smith and Alice Dunlap
Transcription HERE
Early childhood friendships are pure magic. The innocence, the wild imaginations, the freedom of not understanding our limitations as tiny humans, and the ability to dream up BIG schemes. Play is such an important component of our children’s development, especially playing with other children. Luke is so lucky to have a group of core friends who are the children of his parents core friends, making the story of these friends like one right out of a fairy tale!
In this episode, Kristyn is joined by two close friends, Alice and Lauren, who share what it was like to support their friends through a difficult prognosis. They discuss how this experience has shaped their approach to inclusive parenting and the challenges they anticipate facing as their children continue to grow up together. They also provide some insightful advice to other friends and family members who may find themselves trying to show support from the sidelines. And finally, Kristyn shares a heartfelt letter to her friends, one that I think will resonate with many parents of children with rare diseases and disabilities.
#inclusiveparenting #disabilityawareness #disabilityinclusion #disabilityisdiversity
#friendship #raredisease #noonansyndrome
Episode Transcription
Kristyn
What do you think you're going to be when you grow up?
Luke
Ah, a pilot.
Kristyn
To fly airplanes?
Luke
Uh huh.
Kristyn
That's cool. Where would you fly first?
Luke
I'm going somewhere you have never been. It's called the taco place!
Kristyn
You're gonna fly to the taco place?
Luke
Yeah! It's really far away.
Kristyn
Oh man...
Luke
Even farther than that creek you guys drive through.
Kristyn
Wow, that must be some taco place. Hey Luke, can I come with you on your airplane trip to the taco place?
Luke
Umm Hmmm. You can be one of the pilots too.
Kristyn
Oh! We'll be c- pilots. And who should come with us on our airplane trip?
Luke
Hmmmm...
Luke
All our friends. All my friends on school.
Kristyn
Your friends in school?
Luke
Uh Hmmm. And Mr. Dylan and Mrs. Anine.
Luke
Mr. Dylan and Mrs. Anine, your teachers?
Luke
Uh huh.
Kristyn
What about our family?
Luke
Yeah! And Julian.
Kristyn
And your friend Julian.
Luke
Um Hmmm. And Xander too!
Kristyn
And Xander too!
Luke
Everyone.
Kristyn
Everyone should come.
Luke
Everyone in this whole Earth!
Kristyn
Everyone on the whole earth?!?
Luke
Uh huh.
Erica
Welcome to Season Two of Atypical Truth. I'm your host, Erica Jolene. In just about every episode, I start by quoting Walter Fisher, when they state that humans are storytelling beings. That's right. We all have a story to tell. And it is through these stories where the power of connection and community are built. Which is why I created this podcast to amplify the stories of the people in my community, the community of rare diseases, disabilities and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear stories from friends, family and professionals who advocate with us. Mike guest host this season is Kristyn Newbern. She's a fellow mother and caregiver to her son Luke, who was born with the primary diagnosis of congenital heart defects. And it was later discovered that this had stemmed from a variation of the rare genetic condition called Noonan syndrome. So far throughout this season, you've heard from several guests, who entered Kristyn's life in a profound way to help support her family as they navigated her son's rare medical journey. In today's episode, Kristyn is joined by two close friends, Alice and Lauren. Their friendship dates back to a time that they fondly describe as carefree long before the days when any of them were parents, or before they were probably even thinking about parenthood. Like a page right out of a storybook. These three friends experience many important and exciting life events happening merely in unison with one another. But life had different plans in store for Kristyn and Kevin and their friends. Well, they didn't hesitate to travel into unknown territory with them. So today, you will hear from Alice and Lauren as they share about their experiences of what it was like to support their friends through a difficult prognosis. They discuss how this shaped their approach to inclusive parenting. And they talk about the challenges that they anticipate facing as their children continue to grow up together. They also provide some insightful advice to other friends and family members who may find themselves trying to show a loved one support from the sidelines. And finally, Kristyn shares a heartfelt letter to her friends, one that I think will resonate with many parents of children with rare diseases and disabilities.
Kristyn
I'm so excited to talk to you all tonight. Actually. I am generally via group text talking to you both most nights. I'm very excited that you're both here tonight. Since our listeners don't know you very well, if you would both be so kind as to introduce yourselves just so everyone else has an idea of who they Hearing from
Lauren
Yeah, sure. So I'm Lauren Smith, currently based in St. Louis, Missouri with my husband Pete. We have two kids, a two and a half year old and then a newborn about six weeks old. So my life currently is enjoying maternity leave. And really being outside in the summer months has been awesome with audiobooks on my walks is my new my new jam. When I'm not on maternity leave, I work at Cigna Health Insurance in an HR role for almost eight, nine years now. So at the same company right out of college. So yeah, that's a little bit about me.
Alice
Hi, my name is Alice Dunlap. And I'm also a mother of a three and a half year old. My husband and I and our son, Julian live in St. Charles, Missouri. And we also have a dog named Artemis, who I always say is my first baby. So we're very lucky to have him too. I work in communications, I've been in the communications field for almost, I think over nine years. So I definitely enjoy listening to podcasts, and anything, multimedia is definitely really exciting to see this process and get to know my friends in a new way.
Kristyn
So I'm so excited that you said that, because that is what tonight's conversation is all about, is having these conversations. You know, it's so funny, we see each other all the time, and we talk to each other all the time. But how often are we you know, really getting into these kind of details or having this serious, I guess of conversation that's not about, you know, kids stuff, or shows or fun, new trends that we've heard about. So I'm excited to loosen us up a bit. Let's have some rapid fire questions. So Alice, if you were given a fully stocked RV and a week to spend in it, where would you drive,
Alice
I would pack up my family and go to South Dakota, and then over to Yellowstone. I did that trip with my grandparents as a kid. And it was just such a great memory that I have. And I I hope to do something like that someday.
Kristyn
I feel like that's totally something that I could see you and your family packing up and taking that road trip. I think that's great. Lauren, what TV show brings you right back to your childhood?
Lauren
I would say Saved by the Bell.
Kristyn
That's great. Honestly, I feel like 90s Fashion is so trendy right now that it automatically b