HEART DAD
- Jul 26, 2022
- 37 min read
Updated: Jan 4, 2023
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.
Episode Transcription
Kristyn 00:00
What does dad do that makes you smile?
Luke 00:05
When plays with me.
Kristyn 00:07
Yeah. And what would you tell dad if he were listening to us right now?
Luke 00:15
I don't know! Dad, are you listening? I love you!
Kristyn 00:23
We love you, dad.
Luke 00:24
We love you so much daddy.
Erica 00:38
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,
Erica 01:35
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.
Erica 03:25
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.
Kristyn 04:03
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.
Kevin 04:34
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.
Kristyn 04:43
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.
Kevin 04:54
Yeah, let's do it.
Kristyn 04:57
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?
Kevin 05:16
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.
Kristyn 07:24
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.
Kevin 07:59
I know. I knew right away though.
Kristyn 08:04
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
Kevin 09:41
I was gonna say yes, there should be all the attention paid I guess me no doubt about it.
Kristyn 09:47
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
Kevin 10:00
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.
Kevin 11:01
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.
Kevin 11:43
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.
Kristyn 12:05
Which, in all fairness that's on brand for you.
Kevin 12:08
Yeah, absolutely. Makes perfect sense. Yeah. Yeah, for sure. So no surprises there. But yeah,
Kristyn 12:15
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?
Kevin 14:14
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.
Kristyn 15:27
Mentally,
Kevin 15:28
mentally, yeah.
Kristyn 15:30
But in reality, everything sped up, right?
Kevin 15:34
Yeah. But in that moment, where those words were spoken, it was like, everything just kind of stood still.
Kristyn 15:39
Yeah.
Kevin 15:43
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.
Kristyn 16:25
Sounds familiar.
Kevin 16:27
Right.
Kristyn 16:28
I mean, that's exactly how we approached it. Right?
Kevin 16:31
Yeah.
Kristyn 16:33
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?
Kevin 16:42
Right. Little did we know.
Kristyn 16:48
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.
Kevin 18:08
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.
Kevin 19:17
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 him through the hallways, and then maybe got to see him for 30 seconds before elevator doors opened, and we took an elevator all the way down to the NICU.
Kevin 20:22
And then I remember this brief moment in the NICU. It was just me and Luke, for the first time ever, you know, he's minutes old. And a nurse walked in a NICU nurse and showed me how to change his diaper because I had no idea what I was doing, and how to give him his beaky. And it was like the first moments, I remember. And I remember kind of looking at the clock as I'm standing next to Luke being like, oh, my gosh, well, he's one hour old. Now he's two hours old, and my counting these hours and all that it was just kind of like hitting me as I was standing there next to him. But at the same time, now you're up like three or four floors above us. Somewhere in the hospital, I had no idea where you were. But luckily, in the NICU, there's like a nurse in there all the time. So I was able to, you know, leave Luke for little bits of time, go up and see you and check on you. And I remember coming up to see the first time and you're very out of it. But asking, how's Luke doing? What is he doing and all this stuff, and just trying to reassure you that everything was okay, and they needed to rest because in a couple of days, we're going to be going to a different hospital for surgery. So it was absolute chaos, basically, the day he was born in the following hours and days.
Kevin 21:45
Well, there was like a third part of it too, with the grandparents, especially Kristyn's, parents. So like, I literally remember just not really running but felt like I was running like, all across this hospital where random people my parts of my family were scattered through. And I remember just not really feeling anything except adrenaline and trying to get from one place to another place to another place, like kind of just in a rotation over and over as best as I could. I don't even remember going to bed or anything that now I gotta remember anything about except for running between the rooms, basically. I think it didn't give me Yeah, it didn't give me any time to really worry, was the fact that like, I felt Luke was in a really good spot in the NICU. I know person super strong, but I think I was more worried about Kristen at that time, just because the last time I saw her, she's laying, you know, cut open, and everyone's leaving her. I mean, it's laughing now. But it's it was very scary. You know, and I know her and she's gonna want to know everything about what's going on with Luke. So there's no time to really process anything for me. And that's fine. It was like a welcome distraction.
Kristyn 22:58
Yeah, it was a sounds like it was like, it was a role to play. I feel like, especially at the beginning, and this is probably true across the board, regardless of medical diagnosis. But in the beginning of life, it's, you know, Dad has to almost find ways to make sure that they're, you know, being helpful and available. And, you know, consistently there, it's just, I feel like that was that role that you played in, in, you know, not only just the labor and delivery, but throughout that first hospital stay, it was such a bit, I mean, there's no way that I would have felt, you know, in any way comfortable with any of that, if you hadn't been there. Without knowing like that you were taking care of it, you were doing making the rounds and being the communicator. And, you know, that's just I think that's something that it's so vital.
Kevin 23:58
I think it's kind of almost selfish, though to I like having that distraction, almost. So I don't have to just sit there and start getting lost in my own thoughts and worrying about things, you know, if I can take on that role and be the communicator or facilitator, whatever. Great. I will run around all day. You know, it's it's almost better for yourself, mentally, I think.
Kristyn 24:21
It's a strength of yours.
Kevin 24:23
Could be, maybe.
Kristyn 24:25
So you continued to have to balance a couple of different worlds during that that first hospital stay with Luke. So like you said, we were transferred to Cardinal Glennon after two days of Luke being in this world and it was actually because there was a storm coming. Yeah. A major storm was coming in and Luke was born in January and so that's, that could be dangerous in the cold weather, and so, after that, 24 hour labor and C section delivery, we had about 46 hours, I think until I was in the ambulance with Luke being transported to to Glennon. And Luke's first surgery was when he was nine days old. Yeah, your job at the time did not really have paternity leave at all. And with a wife recovering from major surgery on the couch of a NICU, and your week old baby facing heart surgery, you had to go back to work?
Kevin 25:38
Yeah. Ah, Yeah, it was, it was difficult. I think I had a few days of maternity leave and just used vacation, potentially on top of that. But it was definitely challenging. I remember thinking a glutton 24/7, sleeping there, waking up in the morning, getting dressed in the bathroom for work. And like using the seat to take a shower. And then going to work which luckily, I was working in a location that wasn't too far from Glennon, like going to work and work all day, drive home, get cars for the next day, come see you guys in the NICU or pick you get caught up on everything, try to eat something with you and go to sleep and do it all over again.
Kevin 26:27
And it was definitely difficult, especially when I was at the office and I had no idea what was going on. Because things can change so quickly in the NICU after a heart surgery or, you know, with you because you're just had a C section. So I had, you know, no clue really, you guys were doing okay, or what was going on. I mean, luckily you get to be updated. And I had a few people I worked with that I was pretty close to that I could talk to about it, which helped a little bit. You know, I was thinking about this, leading up to our conversation, but it had to be easier on me than you. Because I know sitting in that room 24/7 like living and dying with every single update. And the time in between those updates, and how quickly things can change. It's just absolutely mentally draining. So again, back to our conversation. It's almost like, I got to have a distraction versus you had to sit there and deal with every single, living, breathing moment of it.
Kristyn 27:24
Just imagine what like a staff meeting would be like, like, you're just like, I don't know, if I'm gonna get that deliverable on time.
Kristyn 27:33
Yeah. You know ,like how...
Kevin 27:34
It was hard. It was hard to, it was hard to care about anything work related.
Kristyn 27:40
Right?
Kevin 27:40
It really gave you though, at least for me, it gave me the perspective like, like, I worry about my job all the time, right? I mean,
Kristyn 27:46
all the time. on brand
Kevin 27:47
It was high stress, yeah, very on brand, right. But that those days of coming from the NICU to going to work and working all day, I did not have one care about my job. And it worked out pretty well. Because it just, you know, made you realize what was important, right? And the work just simply wasn't
Kristyn 28:08
we, we've talked about that, too. How, what, what perspective, all of this experience has given us, you know, with with personal life, but I mean, it, it everything translates to everything, where not necessarily that like, we shouldn't care about anything else. But you know, I always say at work, that these problems, we can solve these problems, you know, these are, these are solvable issues, and if we don't solve them, everyone lives, right?
Kevin 28:42
No, this is...It's just so true. When I was little, you know, again, worry about like school and going to class the next day and always dread going to school the next day, like, you know, I didn't like it, right. And my mom would always see that in me. And what she would say would be none of these things matter. You know, in the grand scheme of things, basically, this this little stuff is not important, you know, right? What's what's important is your family, your health. We have people around you that love you, you know, all that stuff is what's important. The things that you worry about on a day to day basis. And that shit doesn't matter, basically.
Kristyn 29:20
Yeah. Yeah. And and it only took this monumental, extreme, dramatic, traumatic event to make you listen to her.
Kevin 29:31
She was right. She was right.
Kristyn 29:33
Turns out she was right.
Kevin 29:35
You should include that for her so she can hear that. She was right.
Kristyn 29:40
So perhaps as a result of your obligations at work, but I would say also perhaps just a cultural standard that we live in. But when we were both present in Luke's Hospital room, and this is true every time and every hospital room that we've been in And every surgery that we've been through a recovery or outpatient procedure, anything, no matter the medical team member that's on the other side of the bed. But every question is directed towards me questions about status updates, or medication changes or, you know, symptoms or anything like that. Questions about, you know, Luke's baseline or his normal, consistent behavior or anything like that always directed towards me. And I and you know, and that's that, maybe in part due to my rather controlling nature, but probably mostly, in part, to the fact that I'm mom.
Kevin 30:46
Maybe it's because you're sitting there taking notes the whole time.
Kristyn 30:50
And like, demanding that they continue to tell me more details. Yeah, probably a mixture. I would, I would bet that on average, whoever appears more, as the mom, or the mother role in the equation probably gets most of the questions and the attention from medical teams. That kind of puts you in a different space. Right. I wonder, I wonder how that impacts you? Or, or what your thoughts are on that?
Kevin 31:25
Yeah. I mean, they're, they're always kind of surprised when I chime in with an answer I can update or fact or tidbit about how he's doing, you know, oh, you're over there, too. And we were talking to my actually. But in general, I mean, I agree. That's pretty much how it is. But I'm thrilled that it's always directed to you, because I know, you're gonna have all the answers. I could probably figure out the answer for the most part, but I know that you have it all locked down. So I don't think it has a big effect on me, I, I appreciate and value, the fact that they're always coming to you and that you have all the answers like I know, I can count on you for that stuff.
Kristyn 32:06
I feel like we have a good role. Like we have a good balance of roles when it comes but probably because we've had to go through it so much. But when it comes to, you know, the kind of like the fast pace appointment of, okay, we know, we're only going to get this many seconds of time with, you know, this doctor, this specialist. And so we need to make sure we're hitting all the points, and asking all the right questions where they kind of take that lead role in providing details and hitting the, you know, the summary points and knowing that we need to make sure they hear these these specific pieces. And then you do a good job of making up if there's something that I missed that we talked about earlier, you always pick up on it in and ask that clarifying question or, you know, yeah, come at it from a different perspective and ask a question that perhaps that's not the path that we were going down. But it's a great perspective to offer because perhaps we wouldn't have even thought of it before or, you know, that was it adds you know, so much.
Kevin 33:07
Yeah, I think that's how I operate best is, you know, if the conversations happening between you and the surgeon or doctor or whoever, from the medical team, I need to like kind of digest what's being said, and then I can afford more questions as we're going like things will click and I said, Well, what about this or, you know, try to get more information because I'm always trying to understand the end goal. And when do we get out of here? What's next? You know, whatever it might be. Right.
Kristyn 33:33
Another thing that comes to mind here is that I've I've spent this entire season recounting my experiences as a mom going through her son's many repeat sometimes emergency open heart surgeries, as you've listened to those perspectives and memories that you share many of what perspective and memories come to mind for you. Trying to get through. Yeah, you listened to surgery day episode, and I remember trying to reflect on some of my notes in my outline when I planned what I would say for that episode and I you know, it's it's something that you absolutely experienced every piece of it as well
Kevin 34:25
eah. That was a hard episode to listen to. and I think you've captured it really well though, accurately. Ummm, uh...surgery day is a hard thing it's an understatement but um you know, you go in so early like you talked about dressing them in their PJs and especially because Luke was three. His last surgery, right?
Kristyn 34:53
Umm Hmm.
Kevin 34:54
Now he's not like, we think of him today talking and knows everything you know, and as well Have everything. All right playing his favorite music, like 530 in the morning on the way to Glennon. And you're just trying to prepare yourself, right? trying to make sure that you're going to be strong enough to do this, which is, I mean, so hard. You get there, and I think it's that time from when you check in to surgery in the waiting room, and then they call you back. And then you're sitting there and you're waiting for like, it's like, a couple hours, until they finally come back. They kind of take him from you. And then all of a sudden, like, it's just the two of you. And that moment when they like, come take him away, it's just it is brutal. Um....
Kevin 35:55
Then you're kind of in this like, full day of waiting, and waiting every hour, two hours to get updates from the surgery team. which thankfully, they do do that. And that's like, we live for those moments when they come in and either call us or they come in and say hey, this is what they're doing right now, are they getting ready to do this, or they just completed this and you know, things are on track. And like that's, that's what you're wanting to hear. And for me, I mean, it's like, you're like just wishing close your eyes and fast forward to like four o'clock or five o'clock, you know, 5pm When it's done, then you can go back and see him. So then, you know, the surgery happens, you get through it. And you do get that call finally, or the surgeon comes back and tells you how everything went. And they say yeah, the next 30 mins, you get to go back and see him. And it's like this weight is just like, lifted. At least for me, it's always been get through the surgery, because surgery is so scary, right? There's so many things that can happen. It's someone operating on a kid's heart, right? And that is like so scary. But then you get back to recovery. And it's like, wow, this is this is the hard part.
Kevin 37:12
Everyone thinks, Okay, you get through surgery, everything's fine. And again, that's how I've always thought about it. But the recovery is unbelievably difficult. You walk back and you get this, you're so excited to see them. And then you see them. And it's they don't look like you saw them this morning. But when they got taken away, you know what I mean? And it is it's hard to deal with, it's hard to take it's remember if like the first open heart surgery, I think we went back and he was so little at the time. And you saw him laying there in this like giant bed and he's just like on a pillow and has tubes everywhere. And I think I just remember both of us just breaking down on my time because we had no idea what we're walking into see.
Kristyn 38:06
You know, it's interesting, because no one really prepares you or I guess it's not, it's probably not even possible to really prepare you as a parent.
Kevin 38:19
Yeah.
Kristyn 38:19
For what an inpatient recovery is like, after heart surgery. For your kid, you know, I just I remember the first, probably the first two of Luke's that we were both so worried about surgery day. Right? And getting through it. And that is a whole experience in itself. But really, the trauma for for me and I'm, we've talked about this before the trauma really hits as a parent, when you realize just how helpless you are seeing your baby covered in tubes and wires and not conscious and seeing just how steep that mountain is that they have to climb. You know, going through these many inpatient surgeries and recoveries as Luke's parents I think, I think something that I realized and maybe didn't realize until we were faced with it is just how good of a team we are in a crisis, or even when we're just under pressure. And like Lucky Yes, right, that that's the case. But it's, it's something that I realized, I mean, we just, we have this balance and this calm about us. And that's maybe more the exterior, but there's really an openness and vulnerability between us that we can both count on. I always appreciate that you're right there with me. Try into Think critically plan for what we can control. But honestly, that's not something that we like tested before we got married, let alone started dating. It's not like we really even knew that we'd ever have to experience that or use those tools for that partnership. I'm just wondering what your experience has been like, or what your thoughts are about how we handle being in a crisis?
Kevin 40:29
Well, I mean, you're exactly right, you can't really know that about each other until you're faced with that situation. I mean, thinking back on it before being put in those situations with major heart surgeries and illnesses. I don't think we've ever had a major crisis even tested on right. But I think it's crazy how lucky we are that we both are. So like, we worked so well together in those situations. Now, I'm so thankful, I don't think either of us ever get like, hysterical. And like, where we can't talk to each other or figure out the next steps. So I guess it makes sense to think you know, because we are both very analytical and approach things as, okay, we know there's a problem. What's the next step? And then what's the step after that? How do we get past this? And we both immediately go into this, like action mode of, okay, you hear the news, whatever it may be. And we're already this is, this is the next step, this is what we're going to do. And here's how we're going to get past all this.
Kristyn 41:29
And that's not to say, I mean, you know, sitting here thinking about it's not to say that we don't break, right?
Kevin 41:36
Yeah, that's not it. Yeah.
Kristyn 41:37
I mean, I remember, like specific times, it's just that we don't break at the same time. Maybe that's it, right?
Kevin 41:45
We've allowed ourselves to before but yeah, in general, we generally keep it Yeah.
Kristyn 41:51
I feel like we can tell when the other one needs to be the vulnerable one, you know, or throw the pity party? And like, yes, that's fine party have to let's dive in. And why is this happening to us? Or why our family or why our kid and having someone that I trust entirely that can be going through that, literally, alongside me has been everything?
Kevin 42:16
Same here. And I know, I totally can, you know, read off of you. And if I can look across the room and you are found, you're asking questions that you're, I know, I can like, okay, I can take a step back and collect myself or do whatever I need to in that moment, you know what I mean? We're really good at not letting the chaos like overwhelm us.
Kristyn 42:39
The last five years have been the best five years of our lives. But that's not to say that they've been extraordinarily easy. In fact, they've also probably been the hardest five years of our lives.
Kevin 42:52
There's no doubt they've been the hardest five years for my life for sure.
Kristyn 42:57
What's been the biggest challenge in that timeframe for you?
Kevin 43:04
There's probably a million things. I think that either of us to list, but I think we agree on this one. And I think it's what you called the dull roar. And one of your earlier episodes. It's the uncertainty. Partly, that is so hard because of how we both are, I think, we want to know everything we want to plan and want to make sure we can get our boxes checked before we do something. And this is, like someone laughing at us and saying, Oh, you like it that way? Well, you're gonna get the most uncertain event ever. So yes, all the things we've gone through five heart surgeries. All the things that we have to do that, that Luke has to do to work so hard on, not even including the IVF with genetic testing. That's a pretty big life event for most people. And we kind of took it in stride and looped it into all the other things that we've been through in the last five years.
Kevin 44:03
But if I had to sum it up, it's the uncertainty, just not knowing will there be another heart surgery? You know, we know to an extent there will be some kind of procedures, but we don't know. We just don't know really much of what any of it entails.
Kristyn 44:22
It is. I would agree with you entirely there. And maybe, maybe also add just how it's so it's so interesting to be in this place where Luke, he's able to go to mainstream school, he has, you know, the ability to communicate, you know, and do all of these things and wants to like play outside and do all these things that you it's easy for us to kind of forget just how quickly we can be pulled right back into crisis mode.
Kevin 45:01
But it's happened so many it feels like so many times, right? Yes. I mean, I can, I can vividly remember after the second surgery or the third. Okay, we're, we think we're good, you know, and then you go for a follow up appointment for a follow up echo. And three or four days later, you're having surgery. And it's, I mean, you talk about your, just the walls caving in the world crashing in on you kind of thing. It's, we always say that we live between appointments, right? So in this case, it's six months, nine months, or 12 months between heart appointments to go get an echo done and see how things are doing. And during that time period in between, you're right, I mean, it feels like, feels like all that other stuff. I almost didn't even happen. But you know, okay, next time we go, I mean, I guess this news, and we could be having surgery, and going through this whole vicious cycle, again.
Kristyn 46:04
And we've also had other instances too, right? Where, you know, we think everything's just a normal day, and we wake up and then, you know, flukes not feeling well, not feeling well, means that this could be just a stomach bug from a regular interaction, or it could mean that in three hours, we're going to be flying into the ER and, you know, having a crash carts or wheeled up to the room outside our door. Right. And it's just, I don't know, it's just that, that that forever thin veil that just always, you know, that dull roar. However, you know, we we perceive it of just always knowing that that possibility is no matter how good things are, no matter how strong. We feel. It's it's always just right there. The basketball is just hanging out. I totally agree with you. That's, that's always that looming challenge.
Kevin 47:06
Just to add on that, you know, if Luke wakes of not feeling good, it's, it's not you know, Ozzie, for instance, wakes up and has a stomach bug. We hang out on the couch. We watch movies. With Luke, it's okay, get the pulse ox. Let's see what the numbers are. Let's test his glucose levels. Let's call the cardio team.
Kristyn 47:27
Yeah,
Kevin 47:27
you know, it's a whole set of things that we spring an action on.
Kristyn 47:30
Yep. Pull the med bag right?
Kevin 47:33
Thats right.
Kristyn 47:35
Let's step away from crisis for a bit. If we don't mind.
Kevin 47:40
Yes.
Kristyn 47:40
And let's talk about the best people that we've ever met. Tell me about Luke and Ozzie. What's it like being their dad?
Kevin 47:51
Being their dad is like the absolute best. It's gonna be impossible for me to describe. I really, I can't put it into words. The feeling of being their dad, it's indescribable. It is love that I have never known before that I honestly had no idea. It was possible. It's, it's all consuming. It reminds me of when I was a kid. As a kid, you know, you know, your parents love you. Right? They tell you this all the time. They worry about everything that you do. You know, I would always think they're the littlest things. They don't need to worry. I don't know why they're worrying about these things. But I remember my mom specifically saying, well, you'll understand why I worry so much when you're a parent, you just can't understand that type of love, until you are a parent. And I mean, she's absolutely right. It's, again, the most overwhelming feeling I've ever had. And it's just the absolute best. So now being dad to Ozzie and Luke, I totally get it I get when my parents always said, and like I said, it's, it's just the best and the amount of happiness I get from being their dad is unreal.
Kristyn 49:07
So you likely did not anticipate any of your children having a life threatening medical diagnosis. And, you know, it's, it's probably different than what you just imagined. Sense is probably different than what you did with your dad. But I wonder what impact that has or has had on your relationship?
Kevin 49:31
Yeah, I mean, certainly you don't anticipate your child or any of your children having a life threatening medical diagnosis. So it has, you know, it has impacted i, we do, of course, you know, baseball on all the things I've ever wanted to do, right. But we do do different things to that you don't anticipate when you think about being a father. I've been kind of lucky. I'm able I have I have the ability due to the kind of work I do and things that I get to take Luke to physical therapy. Quite often, that's something you know, that we get to do together. And I think it'd be pretty easy to think of that as a, you know, something that you have to do, right. But I remember the first time and now every time that we've gone since. And it's been since he's 12 weeks old, I don't know how old he was when he first had it. But it's been a long time, right? Every single time that we go, and it's an hour long, and it's every week, and seeing like the work he puts in. And the progress that he makes is, it's like the best feeling in the world, they can just so proud of him, because he worked so hard, and he's come so far, and he does it all with a smile, and he doesn't complain about it and has fun doing it. And he takes it like all in stride. It's no big deal to him.
Kristyn 50:45
Because of that, because of every step that we've seen him take. And we've seen how hard he works that like, we celebrate so much more in our house than I think we would have, you know, had had everything just come so easily. And I think that's maybe a good consequence of this journey that we've been through that, that we really do we we kind of know how to prioritize and not really sweat the small stuff and celebrate every victory, you know, not striving for perfection or striving for progress. There's a tremendous amount of challenge that comes with this type of parenthood. A lot of uncertainty, a lot of or, I should say, hardly any guarantees. But there is an unmistakable joy. There's been so many points of joy and so much overarching joy throughout our lives, especially these last five years. What brings you the greatest amount of joy?
Kevin 51:58
The greatest amount of joy, it's hard to say just one thing, right? I mean...
Kristyn 52:02
Right.
Kristyn 52:02
I think it's really just watching them grow. And watching them grow together. You know, watching them each kind of form into their own personalities, like we talked about as these rebellious silly authentic self, Luke's very kind of studious, analytical, both are super loving and caring. But then watching those two personalities that come together, and the two of them grow together now that as he's a little older, getting to watch them play together, make up like these little silly imaginary games together, running around the house, in loose kind of directing traffic for Ozzy and tell them okay, as you know, go do this. And they're just having the best time just running around together doing some game that they totally made up, but they both totally understand it at the same time. That is like so fun.
Kristyn 52:53
I will say that if Ozzie listens to one person, I'd say it's Luke.
Kevin 52:59
It's Luke, for sure. At least, if he's gonna listen at all, like 5% of the time that 5% is for Luke.
Kevin 53:07
It's to please Luke.
Kevin 53:09
Yeah. And then, you know, another greatest joy is that anytime either of them come up and say, you know the words I love you, dad, or they come up and take your hands out to you and lay down and cuddle next year. Those moments are the best year
Kristyn 53:32
we've heard your perspective, from the medical trauma and crisis mode all the way to fun loving, joyful dad mode. One thing that many of the moms in medically complex communities bring up over and over again, is the lack of support and connection for dads in this world. I mean, we don't often hear from fathers or father figures of disabled or medically complex kiddos. In fact, this episode might be the very first time that someone is hearing the perspective of a dad who's been in your shoes at all. So not to put a lot on your shoulders here. But what advice would you share to a dad who's maybe just entering into this world?
Kevin 54:32
Yeah, when I when I was thinking about this, the first thing that came to mind was that it's okay. If whatever you're feeling when you first get that diagnosis, when you first hear this potentially awful news, you know, is that whatever feelings you're having, it's okay. It's okay to process those feelings. To feel, you know, anger or fear or sadness. You're only human, you're going to feel those things. Because I remember, when we first found out about Luke's heart condition, and then a genetic condition, it took me a long time to really process everything. I wasn't sure how to feel, you know, I'm still pressing it, processing it today, every day as we go. Because like we talked about, it's such an uncertain future. How are you supposed to feel about that? You know, I don't know. And it's also, uh, you know, I'm going to make clear, it's okay to talk to your partner about your feelings. Like, I can't tell you how many times I've had to just open up and talk to you and you to me, and because at the end of the day, the partner is the only person that really knows what the day to day is, like, the, you know, minute by minute changes that may be happening that may impact your child's health, I am lucky enough that I have a close group of friends that I can talk to sometimes about these things. You know, we we are guys, so we don't always talk about the most serious things. But you know, it is nice, every so often to call one of them up and talk about it talk about things that are bothering you. A doctor's appointment that might be coming up that is potentially scary, you're not sure what the results are going to be, you know, you've you've just been hit with some life altering information. It's okay to express those feelings. So you really don't have to hold that in. And in the end, I think it makes you a better father, be the best father that you can be. If you can come to terms with those feelings, and talk to, again, your partner, your friends, someone about them, so that you're not trying to internalize everything and make sense of it all yourself, because sometimes you just can't make sense of it.
Kristyn 56:52
And finally, we talked about how this podcast project has served as a time capsule of sorts for us that we can give the boys when they're ready, all of these recordings, and they can listen long after we're gone. And in that spirit, I asked you before this conversation, if you could prepare a letter to the boys, for them to hear when they do listen to these. So I'd love for you to share that though.
Kevin 57:32
Trying to get through this without being too emotional.
Kevin 57:37
Luke and Oz, I love you two, so much. Being your dad is an honor and a privilege. It is unlike anything I've ever imagined. Nothing has brought me more joy than being your dad. It's the best thing I've ever done, my greatest accomplishment And I think it's the thing I am best at in this world. I hope that you can one day look back and say that I did a good job at being your dad. I'm so incredibly proud of you guys. I hope you know how much me and your mom love you. Please continue to be nice to each other as you grow up as you become adults. And as you have families of your own. Always be there for each other. Having a sibling is an amazing thing. Stay close to each other and take care of each other. And keep being yourself. Don't let the world tell you who or what you should be or what you can and cannot do. You are both such great people. Such great kids. Don't lose what makes you you keep being silly, curious. kind and loving. Lucan Ozzie, I love you. Love always dad.
Kristyn 58:58
Kevin, thank you for coming on as my final guest for the season. Thank you for believing in these wild ventures that I pursue and supporting me every step of the way.
Kristyn 59:13
You know, I was 20 years old when I fell in love with you. And I mean, how could I not you were so hot, listened to the best music, knew how to have fun, and make me laugh in just about every situation. You cared so much for your family and your friends. And you had so many friends. Not in this like fratty class clown type of way but in a legitimate, I've got your back kind of way. I felt like myself when I talked to you. I felt like I didn't have to impress you or you didn't have some premeditated expectation of me. You just got me, unlike anyone else. I think for me, that's what has stuck throughout our entire relationship. I mean, you're still super hot, don't worry, that's only grown right. But we both changed. We both grown we've been through more than clearly either of us could ever imagine. Many ups, a few downs. And it turns out that all of those adults were right when they said marriage is hard work. And it does not come without sacrifice or compromise. But here we are. And you still get me. I can look at you across the table or room. And no matter what the situation is, I know where we both stand. We've extended that understanding between us into our parenting roles, we easily can bounce off of each other in those in the moments parenting tests, like the random existential question at the dinner table, or the brother fight that boils over in the middle of playtime, or the touch-and-go, life threatening crisis in a hospital. You and I rely on each other as parents and as partners. It's something that I saw in you when I first fell in love with you, but I didn't recognize it for what it was until you became the father of my children. Everything single day, I am grateful to be your partner in this life, and to be parents to the two very best people we will ever meet. I will always love you and the family that we've built together. Thank you.
Kevin 1:01:47
Thank you, Kristyn. I love you so much.
Kristyn 1:01:50
I love you
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