HONORING THOSE WHO HAVE MADE A PROFOUND DIFFERENCE IN OUR LIVES
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
A storied dedication to those special people in our lives who exist beyond the microphone, those who have shown up in more ways than we can count, the people we have yet to interview but whose conversations and connections mean the world to us.
If you have enjoyed this season and would like to share some words of gratitude and a story about the impact it has had on you, I encourage you to send us a recording. HERE you will find a link that will allow you record a short message. I would like to share these messages in the approaching season finale, so I ask that you please record your message before July 1st.
Episode Transcription
Luke 00:00
Mom...
Kristyn 00:05
Yes.
Luke 00:06
Where does cheeseburger go to dance?
Kristyn 00:12
Where?
Luke 00:18
The meatball! Get it?!?
Kristyn 00:19
(Laughing) The meatball!
Luke 00:20
That’s so funny.
Kristyn 00:24
You are a good joke-teller.
Erica 00:41
Welcome to Season Two of a typical 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 those stories or the power of connection, validation, and community are built, which is why I created this podcast to amplify the stories of 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. We have spent this wonderful second season with Kristyn Newbern, who is a fellow medical mom and caregiver to her son Luke, who was born with a primary diagnosis of congenital heart defects. And it was later discovered that he had a rare genetic condition called Noonan Syndrome. It feels bittersweet to say that we are nearing the end of the second season. Kristyn has not only introduced us to her beautiful family and narrated life through the stories of their experiences. But she's also introduced us to so many wonderful people who make up their family’s tribe. The conversations that have taken place throughout this season have been so profound, so relatable, and also very informative. I am beyond grateful for the time that both Kristyn and her guests have spent with all of us. I remember when the first season, my season came to a wrap, I felt a great deal of remorse for the conversations that I didn't get to have with the guests, that I didn't have time to interview for the questions that I forgot to ask, and for the information that I had yet to share. And it was no surprise to me that Kristyn felt the same. And so today's episode is a story of dedication to those special people in our lives who exist beyond the microphone. Those who have shown up in more ways than we can count, the people who we have yet to interview but whose conversations and connections mean the world to us. And before I let Kristyn take it from here, I have one special audience request, which I've saved for the end of this episode. One that I hope you will consider if you've enjoyed spending the second season with the new birds.
Kristyn 03:54
Today's episode does not have an interview. Instead, I wanted to share with you about two of the impactful relationships in my family's world from my own perspective. See, when you become a parent, you realize how much you need support. And when you become a medically complex parent, you realize it tenfold. I want to share with you today about two of these incredible people in my children's world. If you're listening, chances are I just as easily could be telling a story about you. And if you are listening, but you aren't in my world specifically, maybe you have made a difference like this for someone else.
Kristyn 04:39
I believe healthy relationships with adults are so important for children. Being able to trust, learn from, and relate to people outside of your own direct parents. I remember as a kid, I was an only child, but how to close extended family with cousins, aunts, uncles and grandparents. Growing up I spent many weekends playing with kids, lessons learned from aunts and uncles. I remember sneaking upstairs at family get-togethers to hear the adults roaring with laughter at some story being told and thinking that I couldn't wait until I was old enough to be in on the fun. As an only child, I remember thinking about how if I had kids, they probably wouldn't be born into a big extended family, depending on who I married. I also remember my dad's reminders, as my relationships would get more serious, that you don't marry a person; you marry their entire family. In high school, I think I met him with an eye roll at best as a response. But now I'll confirm that the advice is sound. And fortunately, in my case, I'm very grateful that it is. I met my husband, Kevin's younger sister Mallory.
Kristyn 05:56
When I first started dating Kevin in college. It was summer, I was “the new girlfriend,” and I was totally intimidated by this girl. She was a couple of years younger than me, but she had this presence about her that was magnetic and competent. You just wanted to be around her. She knew the best punk rock bands went to all the concerts, had a ton of friends, and had the genuine respect of all of Kevin's friends. She grew up with an older brother and a bunch of older boy cousins; she knew how to hang out with the guys but was absolutely true to herself and her own beliefs. For that first summer, I remember I just tried to act as cool as possible before she'd surely find out that I was a complete loser fraud who knew more about calculus than how to keep lasting friendships.
Kristyn 06:46
But from the start, Mallory looped me right into her circle. I went to concerts with her and her friends, spent lazy afternoons laying out on lawn chairs in her parents' backyard. She told me about how much she liked baking and that maybe one day she could own her own bakery. It was a dream, but it was her dream. As the years passed, we grew extremely close. She pursued that dream of baking and worked for a well-known restaurant here in town while planning for her own company. And sure enough, after being the maid of honor at my wedding to her brother, she started her own bakery and specialized in French macarons.
Kristyn 07:25
She was and is the sister I always wanted when I was pregnant with Luke and found out about the first steps of what his medical journey would be, Mallory was worried and uncertain but always supportive. She was continually there for me, and didn't tiptoe around any issues, or try to avoid it. She asked questions about Luke’s surgeries and questions about his nursery. She helped me plan for both and everything else in between. Malory and her boyfriend Clayton got engaged just before I gave birth to Luke, and Mallory asked me to be her maid of honor. I was thrilled, of course, but also kind of nervous knowing the uncertainty that Luke's early life would hold. Their engagement was nearly two years long, and part of me wonders if knowing Luke's pending heart surgeries impacted the planning of their own timeline for marriage.
Kristyn 08:31
In Luke's first year, as we navigated surgeries, a newborn and baby and heart failure, and starting to discover his genetic condition, Mallory and Clayton were consistent, loving, and supportive. As we were just starting Luke in physical and occupational therapy, Mallory and Clayton asked Luke to be the ring bearer. Under normal conditions, this would have been a greatly received gesture. But in all honesty, I was nervous about the responsibility. Calculating and out, I realized Luke would be 20 months old at their wedding, and I had no idea if he would even be able to walk by that point. When I voiced this concern, Mallory didn't miss a beat to say, of course, it didn't matter how he'd come down the aisle. Walking in a wagon, being carried by a grandparent, horse and chariot - we would find a way. The important part was that he was there because he was her nephew. She put me at ease, and I internally set a goal for him to be able to walk. When the big day came, Luke had just a couple weeks of taking his own steps under his belt for everything Luke had been through up to that poin t- multiple surgeries, gross and fine motor delays, uncertain genetic prognosis ahead.
Kristyn 09:43
That day, he was Mallory and Clayton's - and arguably the world's most adorable ring bearer. He wore a suit, suspenders, and a bow tie. He held his parents' hands and slowly, proudly, happily walked down the aisle to support his aunt and un