Love For Our Family Is What Carries Us Through
Hosted by Erica Jolene, Kristyn and Kevin Newbern | Transcription HERE
Punk Rock, just like DAD! (That is really what this episode should have been titled!)
It was an absolute honor and joy to have been the lucky third wheel in the intimate conversation between Kristyn and Kevin. This one really hits all the feels - you have comedy, you have joy, sadness, fear, and, most importantly, you have love.
LOVE is really the most powerful theme of this episode. If there is one thing I hope you take away from this entire season, it is just that: it is LOVE that fuels us through life's most unpredictable of challenges. ...oh, and that our moms are always right, 99.9% of the time
#HeartDad #RareDisease #RareDiseaseDad #NoonanSyndrome #Dadvocate #MedicallyComplex #CHDAwareness #CHD
Kristyn is joined by her loving husband and proud father of Luke and Ozzie, Mr. Kevin Newbern. It is incredibly rare to see or hear the father’s perspective on life as a rare disease parent. Kevin shares his story, thoughts, and feelings on life as a Heart Dad. As they explain throughout this episode, becoming a parent to a child with a life-threatening health condition transforms you, and that transformation isn’t always easy. It is full of fear, sadness, discomfort, and uncertainty - all of which are rooted in the profound love for your child. It's that same love that helps us to persevere.
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 to 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 30th.
What does dad do that makes you smile?
When plays with me.
Yeah. And what would you tell dad if he were listening to us right now?
I don't know! Dad, are you listening? I love you!
We love you, dad.
We love you so much daddy.
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 I state that humans are storytelling beings. That's right. We all have a story to tell. And today's guest shares a story and perspective that we don't often get to hear in the rare disease community. My guest host this season is Kristin Newbern, who is a fellow mother and caregiver of her son Luke, who was born with congenital heart defects, and was later diagnosed with a rare genetic condition called Noonan syndrome. And today's episode, Kristen is joined by a very special guest, her loving husband and proud father of Luke and Ozzy, Mr. Kevin Newbern,
And fair warning, this episode is like the podcast equivalent of a Hallmark movie. What makes this episode so special is that I mean, we rarely get to hear the perspective of the medical dads in the world. And I say this confidently, because, well, it's the downright truth. In all the rare disease social media groups, I'm involved in the committees that councils and all the Instagram medical families that I follow; it's just so incredibly rare to see or hear the father's perspective on life as a rare disease parent. Now, that is not the only thing that defines Kevin. He wears many other hats beyond his role as a heart dad. He has his master's in business administration. He works at an IT consulting firm. He has an incredibly loving family and a close knit group of friends. And just like Kristen, they had full lives before becoming parents, let alone rare disease parents. And as they explain throughout this episode, becoming a parent to a child with a life threatening health condition, it transforms you. and that transformation, it isn't easy. It's packed full of fear, sadness, discomfort, among many other things. All of which stem from your profound love for your child.
Today, we get to hear about all of these themes from Kevin's perspective, his story, his thoughts, his feelings. And what I couldn't help but to notice is how much love his voice resonates with even through the toughest parts of their journey. You feel the love. And I know that someday, if Luke and Oz ever listened to this, they will feel that too.
Here we are on the podcast. It's so funny. I remember when, when all this started about a year ago, and I first ran the idea of being a guest host for an entire season of a podcast. by you, Tony, I was excited and nervous and all these things. And now, here we are, you are my last guest to interview and just feels kind of full circle.
It's crazy that it's your last guest already. I mean, this is like flown by and you've been putting me off long enough. I'm excited to finally do this.
Well, I sure have. I've made to that because I've been the most nervous to talk to you honestly, let alone broadcast it out to the world. So let's do that.
Yeah, let's do it.
We met in college at that small, predominantly engineering based university in rural Missouri. And in an earlier episode, I told my perspective of how we first met, but I would love to hear your side of the story. And I'm sure it's just love at first sight, right?
Well, for me, it was I only kind of joke about that, right. So there's two times that I remember being kind of the first time that I saw you. And I don't remember kind of which came first, but I think it was at a party at my fraternity in Rolla. And it was, it was a big party, like one of the ones where it's while people, and I was standing kind of the main room of the house, talking to our friends, Ben and Katie at the time, and we noticed you walk by, and go out to the back porch of the house. And I was just like, wow, and I guess, Katie and Ben can notice the look on my face. And they said, go talk to her. Okay, I've had a few drinks, you know, I'll go talk to this beautiful girl. And I didn't think twice about it, I walked out to where you were, and probably very sloppily offered you a drink, to which you politely declined. And that was pretty much it. But the other part of that, that I remember, which was a separate time, for seeing you in a giant lecture hall, I was seated in my seat, and I remember seeing you come in and walk down the stairs. And again, my jaw was on the floor. And I thought, Who is this beautiful girl that I'm seeing? And really, from that point forward, it was just a series of events over the course of the next year or so, basically, me desperately chasing you around, waiting for you to say, Hey, let's go out. And maybe a year or so later, me and a few of the guys from the house had this cover band. We had a lot of practices. And one of my friends said, well, we need a singer. And I know this girl who sings her name is Kristen. And it's a great yes, they absolutely know Chris, it is vigor over and after many nights and days of practicing in the basement. I remember it was like our first public performance. And one of our friends came up to me and said, Hey, I think you need to talk to Kristen. And that was it. I remember packing up my car like the next day, driving home for summer break and calling you as soon as I got home. And we went out to one of my friend's house and Florissant. And here we are 13 years later.