Sharing the Journey of Parenting Kids with Rare Conditions
Hosted by Erica Jolene and Kristyn Newbern with special guest Nichole Rosenberger
Transcription HERE
Two moms of children with a rare disease find comfort in the permission to get uncomfortable.
This is the story of a very rare friendship. A friendship that has traveled the familiar scary paths, faced many of the same medical challenges, had the same hard conversations, trusted the same surgeons with the lives of their children, waited in the same family room, stared at the same hospital walls, listened to the same alarms of beeping machines and blaring monitors. All this, while wondering how to move forward with all that they both came to know. This is the story of Kristyn and Nichole.
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Episode Transcription
Kristyn
What's your dog's name?
Luke
Charlotte
Kristyn
What kind of dog is she?
Luke
She's brown, my favorite. And cute. And BIG!
Kristyn
That's right.
Luke
And I wuv to play catch with her!
Kristyn
What does Charlotte do when you give her a hug?
Luke
Stay there
Kristyn
She kisses you! (giggles)
Erica
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 people in my community, the community of people with rare diseases, disabilities, and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear from family, friends, and professionals who advocate with us.
Erica
I want to start this episode by saying that my life changed the moment I began meeting and connecting with other rare disease families whose stories I could relate to. Thanks to social media and, well, this podcast, I've been able to share in the joy and the hardships that so many of us face. And this is something that because of our lifestyle, I just never would have had the chance to do in person. These connections, these conversations, they have helped me through some very dark days. There's just something so comforting about another parent reaching out to say, "I get it. I see you, I understand you."
Erica
But what if these words come from someone who actually does really, REALLY get it? Someone who has sat in the same hospital as you, facing the same doctors, had similar hard discussions and held their breath in the very same surgery waiting room as you. And what if you happen to know each other from before all of this, when you are both totally different versions of yourself? Now that it's a very rare friendship. And today, we're going to hear about one of these unique friendships. My guest host for season two is Kristyn Newbern. Kristyn's life was transformed when her son Luke, was born with congenital heart defects and later diagnosed with a rare condition called Noonan Syndrome. Today, she is joined by her friend Nichole Rosenberger, who shares in the experience of having a son, Liam, who was also born with congenital heart defects among many other major organ defects resulting from a rare condition called Alagille Syndrome.
After we take a moment to get to know Nichole, we will learn more about how her experiences as a mother to a child with a medically complex condition - and how that has evolved as he has grown. We also get a front-row seat to the really sweet backstory of how and when this rare friendship really began to grow all thanks to Nichole’s bold decision to confront the uncomfortable, which has made way for a friendship that gives permission to talk about the hard stuff, and finally, we will hear about how the each continues to unintentionally navigate many of the same hard decisions when it comes to growing their families.
Consider this part one of an ongoing conversation with Kristyn and Nichole.
Kristyn
Let's start off with some real hard hitters. What TV channel is the best background noise?
Nichole
Well, it's cliche but true. I don't get a lot of time for TV for myself, because my kids don't like my TV. So instead, it just ends up being their stuff on the background. I'd have to say the least annoying of which is either most things on PBS Kids or the popular parent-favorite right now, Bluey. Which is super sweet, cute little show.
Kristyn
Yes. I feel like we could maybe make a very long list of the ones that are not okay for background noise.
Nichole
Oh yeah, if you want to ask me my least favorite kid shows I'm ready. Yeah, I got a whole list of those.
Kristyn
It would be a very long list, yes. But I agree with you, I do, I enjoy those PBS Kid's shows. They know how to be calm and engaging. So, appreciate those.
Nichole
Right, and not hype my kids up for two hours after a 28-minute episode.
Kristyn
Agreed.
Nichole
Yeah.
Kristyn
What was an irrational childhood fear of yours?
Nichole
I don't know that this is like a fear but more so like, just something I just don't, I just don't like. And that is riding on elevators with more than just the people in my Immediate company, like the people I want to be with. I don't like strangers and extra people on an elevator, because I don't like breathing other people's air. And so yeah...
Kristyn
I feel like nowadays though that's a much more rational feeling, then perhaps in our childhood.
Nichole
Yes, that's probably Yeah. People are probably more aware of that now. But yes, that's always been one of my like, things.
Kristyn
I like it. What is the first thing that you generally notice about a person that you first meet?
Nichole
Can I pass? I have an answer. Well, okay. I can give you an answer. But I don't know. I don't know.
Kristyn
I think I notice first, whether or not someone wants to meet me. My job consists of meeting so many new people.
Nichole
Oh, yeah. I yeah, I can relate to that. Also, because you and I are both in male-dominated fields. And, yes.
Kristyn
Like if they want to, like, meet me as a person, they're interested in me as a human, or if they're interested in a wide variety of other things, including moving on to the next person.
Nichole
Yes. Or thinking that you're like, basically the admin that the guys brought along?
Kristyn
Yes. Or someone's wife. Or...Yes. 100%. And you can tell instantly, like, even before the words, right? You can tell in...
Nichole
it's the body language, the order that they introduce themselves to people. Yup. I totally agree.
Kristyn
Yes. So I think maybe that's it. That would be my answer. Okay, my next question, what part of your morning routine could you not leave the house without doing?
Nichole
Easy. My coffee.
Kristyn
I, I can definitely relate on that one. And the few times I have to, it is upsetting.
Nichole
Yeah, I'll pretty much run late somewhere for coffee. Like it's, like, it's like my emotional support coffee.
Kristyn
I totally hear that. Yes.
Nichole
Yeah.
Kristyn
What is one thing you are presently grateful for?
Nichole
Okay. I don't know if this is like, exactly something I'm grateful for. I have an appreciation for re