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
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.
I certainly appreciate your patience in those early days, right? I do I remember both of those instances that you're talking about. And, you know, you don't really plan on meeting the love of your life, your first week of college. And I think part of me kind of knew that you were or that you would be or that you could be. And I wanted to make sure that I was ready to make good on that.
I know. I knew right away though.
You didn't have the learning curve. I did. Know, it was it was great, you know. Fast forward just a bit of time. In 2016. We had been married for two years. And we decided that perhaps we would want to be parents in the next few years. And maybe we should start, you know, not not trying. And about three weeks later, we found out that we would be parents in another nine months or so. So that was extremely fortunate for us that we were we were able to get pregnant so easily. But it was also kind of, you know, not a not an outright surprise but and speed to market. That was pretty, pretty quick, right? We jumped into learning about becoming parents planning for a baby going through all of the pregnancy. You know, I think I made you wake up every Wednesday morning and take a picture in front of a chalkboard where I drew a different fruit. That was the size that our baby was supposed to be in my belly at that point and all of my feelings and comparisons and things like that. So I fully adopted the like Pinterest pregnancy craze when I was pregnant with Luke and I know really there's so much attention that's paid to the mom to be during pregnancy and and make no mistake there totally should be
I was gonna say yes, there should be all the attention paid I guess me no doubt about it.
But I wonder what was going through your head when you know you kind of first learned about being a debt like that you would be a dad and what were your thoughts as we kind of got closer and closer
Oh, yeah. Well, you know, I do remember the first moment you told me the first day, I thought we would have more time before we were pregnant. Like, you're right, it went really fast. I remember though, that I had just brought home like dinner and takeout from somewhere, I think. And we sat down to eat, you know, got the food out, set it on the table. And then you asked me to grab you a fork, or some kind of silverware, and then went to the drawer, opened it, grabbed a fork, and then closed, it immediately sat back down, and handed it to you. And you just kind of looked at me stared at me blankly like, Hello. I'm like what? You said, Did you see anything else in there? No more silverware. Did I miss something, go back and open the jars, I opened the door. And there was a note in there. And it said to dad on it. And it makes you emotional right now trying to get through this. But, you know, I don't remember the exact feelings at that time.
I remember being like, wow. And like being super excited. And just being like, holy cow, I'm gonna be a dad. And how do I do that. And of course, it wasn't completely shocking or anything, because we weren't trying after all. But it was like just a really cool, special moment. And the way that it was just me and you and how we got to experience that was really neat. But in general, about fatherhood, I didn't really have any preconceived ideas about fatherhood. I mean, of course, I envisioned like baseball games and maybe coaching kids sports teams, taking them to Cardinals games, you know, a lot of the things that my dad did with me growing up is kind of what I figured fatherhood would be like, I definitely envisioned having a boy though. So we got pretty lucky there.
My hopes were pretty much that I wouldn't mess up being a father and that we would, that everything would be healthy. And that was pretty much it. My fears were basically everything. You know, every every possibility was a worry and I was nervous about everything from health to, you know, not knowing what I was doing as a father. How hard the world can be, you know, could go on and on.
Which, in all fairness that's on brand for you.
Yeah, absolutely. Makes perfect sense. Yeah. Yeah, for sure. So no surprises there. But yeah,
right, right. I was sort of living in this blissfully ignorant space of weekly chalkboard drawings and updates on my apps and wanting to figure out what the perfect combination of gray and blue would be to have a neutral and calming wall color in the nursery, right? I remember doing the original the bloodwork at 12 or 13 weeks, not because I was worried about any of the genetic testing results, but because I wanted to know if it would be a boy or girl because I just wanted every piece of exciting information that we could learn about our soon to be kid. For me, it kind of felt like our world have to be Parenthood was kind of this cloud that we were walking on. And you have your worries, but you always have your worries, right. And I think, at least for me, everything changed the day of that anatomy ultrasound. I remember it. So clearly, like, it's a recording on a shelf in my mental library that I could take out at any time and replay. And of course, now when it plays, it's slowed and distorted. In my mind, someone's leaning on the needle too long, right? Because I've played it over and over in my head. There's something about learning that the rest of your lives are forever changed when seven words are said there's something wrong with your baby's heart. How did that afternoon hate you? Was it as you know, dramatic and impactful right then in there? Or did your feelings evolve in those final weeks of pregnancy?
Yeah, I probably say yes to both of those things. I mean, it was devastating immediately. And, you know, we kind of got the sense that something was going on, as like one tech tried to get pictures of the heart, quote, unquote, or get a good angle of the pictures of the heart, and then they would get up and leave the room and someone else would come in. And they would try to do the same thing in writing. Well, this isn't normal, right? This we haven't experienced this before. Something's going on. But when I remember so I remember being at work. I remember that I had made most of the appointments, and I was planning on making this one. But you know, part of me was like, Well, I'm going to the work and I miss it probably wouldn't be too big a deal, right? glad that I did make it. And I remember going to the appointment and thinking that it shouldn't take too long. We'll be done and I'll get back I can finish things up, because I think it was a Friday and then be ready for the weekend. Right? Yeah. And like I said, I remember being at the appointment and things starting to take longer than normal. And then obviously, both of these texts leave and the doctor comes in and says, Hey, there's something wrong with your baby's heart. In that moment, everything slowed. And, like, shut down. Or just like, everything went quiet. And we're like, oh, my gosh.
But in reality, everything sped up, right?
Yeah. But in that moment, where those words were spoken, it was like, everything just kind of stood still.
I remember going upstairs. And we met with the cardiologists. And as we're sitting there talking to the cardiologist, I think things kind of shifted for me a little bit in my mind. Like, okay, now, we can't because we didn't know anything, I took it as, okay, there's something wrong. But it sounds like we have a plan. And we can work this plan. And as awful as it is, we will do the surgery, maybe there will be two surgeries. I'm not even sure if we knew that at that point yet. We knew that there needed to be one. But I kind of started to look at it as okay, we can do this baby will be born will do the surgery. That will be it.
I mean, that's exactly how we approached it. Right?
And that's because that's how we're taught to approach everything is you identify the problem, you form an action plan, you have a solution, right?
Right. Little did we know.
Luke came into this world, about 10 weeks after that appointment. And after a lengthy, frustrating and kind of scary labor, and delivery, it resulted in an unexpected C sharp C section, I was sick, exhausted, and honestly, pretty much out of it. By the time that Luke was finally born, of course, we were surrounded by 40 of our closest medical professional friends, including cardiology, NICU, ob surgery teams, they were all assembled in that crowded operating room, I barely remember getting to see my baby's body as they whisked him into that glass box of a transport unit. But I do distinctly remember them pulling you away when they had you follow them and rushed to the NICU so that they could stabilize him. So along with my husband, and my newborn baby, and about 37 or so of those 40 people, I remember looking around in that operating room and feeling so alone and scared those moments. Tell me your perspective of that day.
Yeah, um, it's completely unreal, I was completely overcome with emotion. Seeing him was nothing like I could have ever imagined in the best way. But to backup, I remember it all kind of starting the team coming in, after super long labor, you know, and saying, okay, C section, and within like 15 minutes, where I'm putting on a gown, a mask, etc. And we're walking into the operating room. And, and walking in there just remember being again, completely overwhelmed. Like, oh, my gosh, this is intense. There's teams of people in they're all, like ready to go, it was all hands on deck. And it was like 1145 at night. So it's very, very intense. And I remember the procedure starting. And then all of a sudden, I remember hearing a crying and seeing Luke for the first time. And again, just the most incredible thing in the world. Then it kind of becomes a blur.
They they rushed him over to do some tests. And I was next to him. And I remember reaching out and touching him for the first time. And then I remember looking over and seeing you and being very nervous said that you're over there by herself because I think like you said maybe 37 of the 40 people were all around me and Luke and making sure he was okay. And at that point, I mean, we didn't have much time they they put him in that glass box like he talked about and they said okay, we gotta go down to the NICU. And I remember your doctor being there and I just looking at her saying please take care of Kristen, because apparently I have to go. And that was it. They put Luke in that box and a full team of us wheeled him through the hallways. And actually, as we're walking through the hallways, our family, our parents, and my sister were all there waiting. And they got like a brief glimpse of him and me and this 14 wheeling