RARE FRIENDS

Sharing the Journey Parenting Kids with Rare Conditions

Hosted by Erica Jolene and Kristyn Newbern with special guest Nichole Rosenberger | Transcription HERE


 



Social Media Updates

Facebook & Instagram


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.


[Image Description: Green background with a white font that reads, “Rare Friends, Sharing the Journey Parenting Kids with Rare Genetic Conditions.” Framed in a circle at the center of the image is a photo of Luke (caucasian male young child, wearing a grey short-sleeved shirt, and short wavy sandy-blonde hair) and Liam (caucasian young male child, wearing a blue short-sleeve shirt, and shoulder-length wavy long hair). Both kids are playing with large building blocks, the playground in the background is out of focus.]


Links related to this episode:

Noonan Syndrome

Congenital Heart Disease

Alagille Syndrome

 

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 really well made drinks. High quality, not something you're gonna get at your like average neighborhood, Bar and Grill, whatever, like true high quality drinks. And so some of my favorite drinks include grapefruit, and basil. Especially if you put those two together. They're very good.

Kristyn

You can be grateful for that, I'll let that stretch I we can stretch to that. And I feel like I'm missing out. So I'm going to have to try this combination at some point. That is pretty neat

Nichole

We'll work that out.

Erica

So Nicole, and Kristyn's friendship goes back many years, actually, long before either of them were ever parents. They were in the early chapters of their lives when they first met in college at Missouri University of Science and Technology, or also fondly known as Rolla. It was here at the small rural STEM school where Kristyn and Nichole were among a very small population of women in the engineering program.

Kristyn

Even though we didn't know each other too well in school, just the fact that frankly, we were both women pursuing engineering degrees at that school, it kind of ensured that we kind of had this mutual trust or understanding of each other, I think.

Nichole

Yes.

Kristyn

But I want to talk about Liam. I know Liam as our rockstar friend that Luke truly looks up to, who has the sweetest speaking voice, iconic long hair, a fun loving spirit and an analytical builder's mind, which I would probably guess he got from you. Liam also has this incredible medical journey, both behind and ahead of him. So I wonder if you can tell me about that, so far.

Nichole

Yeah. So Liam is almost six. He is the older of my two biological sons. He recently started kindergarten which is awesome and exciting and every bit the milestone that is a hyped up to be. And he was also born with a rare disease. It impacted the development of many of his organs and organ systems. But most significant for him are his heart and liver. So he has had three open heart surgeries, he will definitely have more in the future. He has parts placed within his heart that are not native to him and do not grow with him, so those have to be replaced as he grows and gets older. Even once he's done growing, they will wear out over time, so more, more heart surgeries. And he also has a chronic, but currently stable liver disease that stems from how his liver formed. So it will never, it will never go away. He will either always live with a, a wonky liver, as we call it, or he will need a transplant at some point in the future. In addition to being surprised, after Liam was born with his disease, his condition, his organ abnormalities; we were also surprised to learn a while after Liam was diagnosed, that the genetic variance that caused his organs to form the way they did was an inherited mutation. So it was not random. He he inherited it directly from from me, in his case. The mutation that he and I share is an autosomal dominant mutation. Most people think of genetics, in terms of things being inherited from both parents. So to inherit a disease would mean that you need two parents who are both carriers.

Kristyn

So that's what Luke's genetic variant was inherited from both Kevin and me being carriers. So it was autosomal recessive.

Nichole

Right. And so basically, his genetic mutation is an autosomal dominant mutation, which means that it was inherited directly from one parent and Liam inherited it from me. The genetic variance that Liam and I share, even though it is identical on a genetics report, we've seen it he and I have an identical variation. It is extremely variable in how it manifests itself. So I have no, no manifestations. It's a very benign silent variance in me, but in him, it presented as major organ effects. So yeah, that was surprising. Wow. And mind blowing, very mind blowing. I think he'd prefer our shared analytical minds, versus the shared genetics that resulted in quite a bit of medical intervention for him.

Kristyn

Liam has had just an incredible journey, just everything he's faced in all before hitting the kindergarten milestone, you know, it's a milestone for any kid but it's a really big one. For Liam and for, for all of our medically complex kiddos.

Erica

Kindergarten is a really big milestone for kids and their families, especially for families who have journeyed to this point through a life-threatening prognosis, with absolutely no certainty that they would ever reach this point at all. Kristyn and Nich ole, they share in the understanding of just how big these milestones are for their children. And let me tell you, it is really amazing and rare to have a friend that truly understands the road you're traveling with a medically complex child. But Kristyn and Nichole were not always this close. Yes, they went to college together. But like many of us have experienced, life happens. You move away. You get busy, you lose touch. That is, with exception to the glimpses of our lives that we may share, or see on social media.

Kristyn

Nichole, I regret that we weren't as close as we are now when you were first introduced to Liam's diagnosis, you know, going through his first surgeries and recoveries, Our friendship actually started in the middle of your journey, but at the start of mine, in a rather unique way. So I wonder if you would tell me, when you first decided to reach out what led up to you reaching out to me.

Nichole

There's a bit of a backstory to this. I don't know if it was Charlotte, or another dog that you had. But before either of us had kids, maybe before you and Kevin, were even married, you adopted a dog that ended up getting pretty sick, pretty shortly after you adopted? Was it Charlotte?

Kristyn

No, that was that was Clemetine.

Nichole

So you adopted her and she got pretty sick. And you were pretty open with sharing what you were going through with her. And it was I remember, it was just it was a lot of really intense vet visits. And a lot of days like, in like getting emergency care for her. I remember just kind of silently watching you go through this. I was just amazed, because this was a dog that you had just adopted, it wasn't a puppy, it was a situation where a lot of people would just be like, "Wow, this is more than I meant to bite off." She was very sick. And it was pretty clear that she did not have a good chance of survival. And you just like kept fighting along with her when a lot of people would have said, "You know, I'm not doing this," and just put the dog to sleep. And it just it really, I thought was a really remarkable thing to watch. I thought it was really amazing to watch that what you were willing to share a bit. Sure it showed a lot of you and your heart as a person.

Kristyn

Wow, I did not know that. First of all, that you were part of that journey, or you know that you saw that or we never talked about...

Nichole

Yeah, I silently followed along,

Kristyn

For backstory, at age 22, I quit my job came back home had kind of a quarterlife crisis of, "What am I doing here? And where do I go from here? And why did I go through all this education and quit this big fancy job that I thought I always wanted. And you know, now I'm back home where I promised I'd never be," and all this stuff, right? One of the things that I did before getting a new job was move in with my boyfriend, who is Kevin, and bring home, a shelter dog to foster. And she just crawled into my life and was I still to this day, think more than a dog. And she was just so special. And so after a month of fostering her, I adopted her. And then she got really sick, she was like two years old, she got really sick. And then over the course of a week, it deteriorated day-by-day, but every step of the way, it was like, but she's got this quality of life. She's two years old, there's still a chance we can still, you know, do this and she was still fighting and all this. And so we like went through this week long journey. And she started doing better. And we got to the point where we were talking about taking her home from the next day. And then the next morning, we got the call that she went into cardiac arrest and you know that there was nothing they could do. And so it was one of these like, I mean, and again, like this was 10 years ago, this was my only ever dependent that I ever felt responsibility for. And so like now like she's, she was a dog so it wasn't like a child but it was kind of my first you know, experience as like a caregiver to anyone. And So anyhow, that's the backstory of Clementine and she was just like still to this day I think was my kind of a little guardian angel for me. Going through that week was one of the like kind of signs of mine that like, "Oh I'm gonna marry this guy," you know like wow, he was there for all of this and did it and I didn't want to...

Nichole

He didn't tell you "You're crazy, put the dog down. That's it a dog, put it down."

Kristyn

That's right! Not even once! Nichole no one has brought up Clementine to me in, like, so many years. So...wow.

Nichole

Silently watching you go through that, and sometimes like going to look up your profile on Facebook to see like, what was happening with Clementine worked you into my algorithms. So years go by and you get married, get pregnant, and the algorithms are still occasionally feeding you to me. And you had Luke, I remember coming across the first, the first post you ever shared of him when he was a brand new baby newborn, the first the first you guys ever shared with him. And I have Liam, at this point. Liam was a little a little over a year old. So I had Liam, I'd been through a lot of medical experiences with him already at that point. When I saw the picture of Luke, I noticed he was wearing a high flow nasal cannula. And it just it stood out to me like I knew that that's yes, that that happens sometimes that newborns need a bit of breathing help. But it's not something you see in most people's newborn photos. So I noticed it and just made a mental note and moved on.

Kristyn

Because we did not post anything about Luke's stuff.

Nichole

Yeah, you're actually still shockingly like silent about that.

Kristyn

MmmHmmm. MmmmHmmm.

Nichole

Yeah, you're very private about that, for the most part. Most people have no clue how much you guys go through. But a few weeks go by and you shared Luke's professional newborn photos. And so of course, I looked through them, because babies are cute. So I looked through them and I got to one of them and Luke is curled up on his side. And you can clearly see on his side in his ribs on his back, there is a scar between two of his ribs. And although Liam does not, he does not share that scar, all of his surgeries have been directly through his chest, I knew from our time in the hospital, that going through the back through the ribs is an option for how to operate congenital heart defects. I saw that and I just, I had a pretty good sense of...it kind of all came together the picture of him with the oxygen as a newborn, the scar, it all came together. And I had a pretty good idea that even though you had not publicly shared it, that yes, Luke had a congenital heart defect. I saw that and I I disregarded the fact that you might think I was a little bit crazy to reach out to you. Or that I was potentially overstepping my bounds. Or that I was totally wrong! There was a chance, like there's every chance in the world I was totally, totally wrong about what I thought was going on! And I just put aside all of my concerns about that, and immediately sent you a message.

Kristyn

I....I'm so glad you did. If if there's any question. I'm so glad that you disregarded any perceived social norms around this experience that we share. For me in like, you know, thinking about the mindset that I was in at that time. So at that time, Luke was about a month old, we had just come home from the hospital with him. And like you said, the only social media posts that I had created, deliberately left out any information not only about Luke having congenital heart defects, not only about him having surgery, having any sort of diagnosis, but even about us being at the hospital for any length of time. Any of his challenges any of the medical details. And that's because, now in reflection, I was still in a mindset of this was something we could get through. This was something we were just going to fix and get on with his normal life. It's hard for me to admit that now seeing how much of that was this coping mechanism, this ignorance that I was dealing with of really almost me shielding myself from admitting to the world, that I was kind of in over my head with this. And that, maybe we would need some help. And that, you know, this was this was more than something I alone could fix for Luke. And so. So that's why I had kind of deliberately, not only, you know, refrained from posting on social media, but really, a very small group of our closest friends even knew that this was happening at all.

Kristyn

So I was all in on accepting the medical parts of the diagnosis that we knew so far. I had done research. I had spreadsheets. I was talking with doctors and nurses and asking questions. But from that personal, emotional, mental social support research, or efforts, I had made none and I had actually kind of self-isolated. And then poof, there's a message in my inbox. And the thing that I was somehow afraid of, you know, getting out or admitting to or, you know, being vulnerable about; all of the sudden, I felt this rush of relief. This this, like, exhale, of sorts, reading your Facebook message. And I think like, I look back at it a while ago, and it's like, it's like three sentences, like, it is not a big to do. It was just you reaching out and saying, like, "Hey, this might be weird, but I noticed Luke scar, and I was wondering, you know, did he have heart surgery because my son did." All in like, those very small sentences made such a big impact on me in a way that like, I didn't even realize I so desperately needed.

Kristyn

So I don't know if you were planning on that. But that is that was absolutely the impact that you had right away. And I think the fact that we had gone to school together, that I knew, for lack of a better phrase, like I knew you were a real person. I knew you were grounded in this, like shared ambition to have a career and, you know, be a professional in the world and all this. And so I, I instantly related to you, but then also had this connection that I thought I otherwise shouldn't be making, for some reason. So it just, that was the impact that your short message had on me. And so ever since then, I have just been so grateful for that connection, and that friendship that we built since then. So telling you about that impact on me. What was it like for you, knowing now someone who you had gone to school with who now had a similar experience, or was going through that experience. Were you at a place where you had a bunch of other heart mom friends at that point? Or was this one of the first connections that you made in the medical world?

Nichole

I was a little bit ahead of you in things. Liam's a year and a few months older than Luke and he had been through two heart surgeries by the time Luke was born, and we had the full diagnosis. His heart is you know, only one part of his whole syndrome. So we had the whole diagnosis for his syndrome. So I had connections. I had broached into some of the Facebook groups, specifically for his syndrome, but I didn't have any local connections. There are only two families that I know of locally. I know there are more families than that with Liam's condition locally, but only two that I actually know of. I have never met any of them. I didn't know anyone from like my real life. Nobody that I truly knew, or had ever known. And, you know, I didn't have to know you well to remember sitting across like a classroom from you -me, you and I don't know, maybe two other girls in that whole class, sitting across the room from each other. And you were a real person that I had really met in my real life, it just, it made a connection between the person I used to be the person I was, before all of this came. And like where I was, at that point. So yeah, like you it was me, it was just it was there. It was like, I don't know, I don't know how to, like, say that eloquently.

Kristyn

I think you did. I mean, I think is it's so true. It's just, it was that validation that this doesn't just happen to people who have these, like, already established, you know, beautifully written Facebook pages that are just these wonderful odes to their children, which is so great that they have that, but it was just this real person who was right here reaching out. And I could ask the less profound questions too, if that makes sense. I could, you know, relate about the specific hospital that we were staying at, or the specific surgeon that we had, the specific cardiologist who was the same at the time. And just instantly, it became, you know, not just part of some, like, far distant, you know, umbrella of this syndrome, or this medical diagnosis, but it was like, Oh, yeah, my friend is going through this too." So I can, like, text her all the weird stuff, right. So to me, it was just, that was amazing. And I'm so glad that you reached out and that you reached out when you did still when I could go through so much of Luke's experience and have someone to reach out to.

Kristyn

So I think one thing that I really enjoy about our relationship has been that we have always had this unwillingness to sugarcoat things or to, you know, glaze over the nitty gritty details. We want that brutal honesty, that reality of what's happening without any sort of cliches. Which might come off as cold for me to say that, but in a world where we are constantly hit over the head with cliches of, "everything happens for a reason," or, "no one gets more than they can handle," which I'm sure can be very helpful to some people going through this. For us, we would rather have more of that blunt candor, right? Of how we are feeling at the time, good, bad or ugly, it can be refreshing to just have someone to share that with. And I would say that, you know, having that outlet between each other, your perspective has really helped me to kind of come out of my, you know, fix it mindset where I started, to where I am now of being present of listening of controlling what I can, but also asking for help when I need it. And, you know, I think I think being able to be so real throughout the last four plus years, with you has really helped me grow in that way.

Nichole

The candor that you and I do share, when we are in a private conversation with each other and going through something difficult, we're both able to pretty quickly just get straight to the matter and get very, very direct about a situation. Between the two of us, we've been through enough experiences that we know that this is, this is our life nd there are some very difficult points to this. I think any parent who has a medically complex child, we know what we're facing. A lot of people will try to kind of sugarcoat or be gentle about this situation. We we know what the reality of this situation is. We know a lot more than probably what we've shared with most people. So yeah, like let's let's have a conversation. Let's get to the real heart of the matter. Like let's let's talk about the real things and not always put a little bit of glitter on top of it. Let's be real. So...

Kristyn

Wow. That is, I mean that is so true. Someone said it to me once that it's bright-siding. Like, "Oh but look at the bright side," you know, and...

Nichole

"But they're good now. Right" Like, "Well, yep. Right now ,right now they are Yeah."

Kristyn

"Think of how strong he is now," or you know, the things like that where it's like, it's very well intended, but it it's misplaced, I suppose. So I've always appreciated being able to just say, "Gosh, this sucks."

Nichole

Yeah. Yeah. And I think a lot of it comes from to like, it is uncomfortable, it's uncomfortable. A lot of what we go through and talk about is uncomfortable. It's uncomfortable for us, it's uncomfortable for other people to talk about. And that willingness to step into the uncomfortable and okay with the uncomfortable. And that's really where it gets real and makes connections that makes it feel normal, again. It allows you to have a normal conversation about your grievances. Whatever the day has brought, everybody has them.

Kristyn

I like how you said comfortable. Up until this point in my life I, you know, I obviously worked very hard. I studied too hard in school, we all you know, tried hard and did our best all this. But I lived a very, and continue to live a life with a lot of privilege. I had a lot of comfortable friendships. And they are true friendships and their strong friendships. But they were they always were allowed to be comfortable. And I think that a lot of times when you, and that's I guess maybe what I feared about sharing with a lot of my existing friendships was that we'd have to bridge into that uncomfortable. At the cost of seeing whether or not those friendships could carry into that, I chose to be inauthentic and to shield them, and protect them, and package my thoughts and my experience into what could be the most comfortable way to present that. And so I think having the friendship with you, and then later with other parents of medically complex kiddos, being this very authentic, off the bat uncomfortable, "All right, we're all here." On some level, in some capacity, we are all experiencing a version of this life. Being able to make that into a comfortable conversation, into a conversation that I felt connected to, that helped me in my friendships that I had previously to help evolve those if that makes any sense.

Nichole

Yes. Yes.

Erica

I hope. I mean, I truly hope that everyone listening to this right now has a friendship like this in their life. Someone whose presence feels safe, to be unapologetically honest with someone who has an inherent understanding of your thoughts and feelings. Someone who meets you wherever you are, and gives you permission to be real as you wade through the hard, dark and uncomfortable experiences in life. Someone who doesn't judge you if you don't land it right, the first, second, or even third time. Someone who sees your humanity and allows you the space and time to navigate your season of survival. We all deserve friendships that nurture us through our growth, no matter how messy or scary that growth may be.

Kristyn

Nicole, tell me how your approach or your perspective has evolved from where you started into where you are now, with Liam's medical journey?

Nichole

I would say yes, it has evolved would be the right word. Some aspects are easier. Through his first year we gosh, we were probably at either a doctor's office or at the hospital for follow up every week. We had somebody we had to go see and that was on top of all the therapies he was receiving. So that aspect has gotten much easier. There's much less follow up. We're lucky. He's not in any therapies at this point. So that has all become much easier, I would say. Surgeries have become easier for my husband and I. His first surgery was really scary, really difficult. He was, he was only four pounds the first time they opened his chest and four pounders are pretty risky in heart surgery. It was probably a good week and a half, at least before he was really even stable. Every surgery after that, just purely based on the fact that he is bigger and they've not been emergent surgeries that followed. His first one was a very emergency case, we didn't have more than two hours notice that he was going to need surgery for that first one, he declined that rapidly. He was not in good shape, going into surgery, it was very difficult and risky coming out of it. Going into his second surgery, we carried all of that with us. We had no other perspective on what heart surgery and recovery from heart surgery could look like. We've learned since then that it can be much, much easier, much less life-threatening than that first one was. So those have become easier for my husband and I.

Nichole

But the other side of that is Liam is older now. The most recent surgery he had he was three and a half years old. And he's very cognitively aware. He's a very, very verbal child and that was very difficult on him. It took a long time. We talked about that. He talked about that for a long time afterward and all the all the trauma he endured. And it's been a little over two years now and he'll still bring it up on occasion, various aspects. It's incredible that he even remembers things like that the OR is cold, or how bright the lights are, or how the mask smells that they put on their face to give them just the vapor anesthesia. So those are things that that's that's a really hard. That's a really difficult thing to help a young child work through. He knows he has a wonky heart, but he doesn't really understand what that means or why we have to go in and operate on his heart. I think helping him understand that and helping him process it, that is definitely more difficult. So yes, it has evolved. Some aspects are easier, and some have become harder.

Kristyn

Luke was a similar age at his last part surgery, and it's so interesting to hear Liam's reaction and how he has dealt with that being that they're both, you know, they were both so cognitively aware of what was going on, but then also that they're both so communicative and chatty, for lack of a better word. But Luke really has internalized a lot of this and it it's something that I actively try to, not often but, I have had to try to have him talk about because I know he knew what was going on. I know it affected him. And he responds so differently to the medical trauma he's endured. So it's just it's really interesting. And I mean, my goodness, parenting is hard. And parenting a toddler who is going through any emotion is hard. Man, there is no book for this. We're kind of winging it.

Nichole

Yeah. I can't. I mean, there's, there's so many aspects of Liam's personality that we will never know if that's the person he would have been if he had had no medical challenges and interventions, or if somehow what he's been through has, I mean, I'm certain it has contributed to his personality, but there's no way to untangle what is from what might have been otherwise. So you just, you really, it's cliche, but you really do appreciate what you get out of these experiences.

Kristyn

We'll have people who don't know anything about Luke, because he'll walk up to adults, just like, in places and start asking them things as if we're all friends here. I don't know. I've had complete strangers who don't know anything and they'll say things like, He's just an old soul, isn't he?" Or, he's just, he's really, you know, got a lot to think about or something like, he's always been able to just connect with people even before he could say actual long sentences like that he would go up to, you know, like, if someone was at the doctor office, and they were sad, he would walk up to them put his head on their knee, and just, you know, like, you would always find the sad person who just like, like, this, and, and, and I always wonder, and so people have commented on that, or, like, his empathy or his, like, kind of intuitive side. I don't know, I just thought, I wonder the same thing Nichole. Is that just him? Or is that just because it's that because he's, like, seen so much emotion or so much? Like, I don't know. I always wonder about that, too.

Nichole

He's lived a whole whole life experience in four and a half years.

Nichole

Yeah! ...A few years. Yeah!

Nichole

Yeah. We always say that Liam was, that they juiced Liam on bypass. We're like, "Did they jouice him?"

Kristyn

Juiced (both laughing)

Kristyn

I'm sure they'd appreciate that.

Nichole

It could go either way every time they put them on bypass. Yeah.

Kristyn

Nichole, so much of your experience, really resonates obviously, with mine. But I'm sure with so many people listening. I'm really excited for us to continue this conversation because not only have we graduated from the same university, during around the same time, had a rather unique shared Heart-Mom experience at overlapping times. Really, that's just the start of where our parallel lives continued on. And the next chapter of that is that we both have pursued IVF, in vitro fertilization, with genetic testing for these rare genetic conditions that both of our sons had in order to grow our family. So I'm very excited to talk to more about and hopefully you will join me again, to discuss the ins and outs of modern science and our beautiful youngest sons.

Nichole

Yes, yes, I'm excited. It's, yeah, it's another, well, I think, interesting overlap that we have. And it'll be great.

Erica

I loved being a fly on the wall for this conversation, or should I say, a muted box on Zoom. And it was not lost on me that I titled this episode of Rare Friends as these two ladies have not only shared in the journey of parenting children with a rare genetic diagnosis, but they've also shared hospitals, doctors, in the intense experience of planning for future children with the knowledge of carrying a rare genetic mutation. That's just something that you don't very often have in your personal life. We may be able to find it, in our friendships, on social media, and in our groups of other parents with rare diseases. But in our real, personal, lived, local life, it's actually pretty rare to find that.

Erica

So in the weeks to come, we'll be discussing pre-implantation genetic testing, or PGT, and in vitro fertilization, also called IVF. This is just one of many family planning options that couples have if there's a known risk of passing down a severe or life-threatening disease. I'll be transparent in saying that the decision to discuss this topic and share it so publicly was not a decision we made lightly. I also want to note that I personally had a lot of opinions about this subject prior to taking time talking with our next guests, Marissa, who is a genetic counselor, and with Kristyn and Nichole, who will join me again, to share more about their experiences with PGT and IVF. The professional and personal experiences they share have helped to educate me on a subject I once felt very conflicted and uncertain about. It is important to note that this is a complicated family decision. In the episodes to come, you will hear about the compounding factors that families must sift through before coming to such a big decision. I ask that in the episodes to come, you keep an open mind and an open heart. I ask that you reflect on all the episodes leading up to these and find compassion for the complex journey that these families have been on, and the difficult decisions that they have had and that they continue to face.

Erica

If you love the artwork for Season Two, head on over to our online shop where you can find a variety of merch. There are so many options to pick from, but my personal favorites are the tri-blend tee shirts and the loose medium-weight sweatshirts.


Erica

If you love this show and you want to ensure that you will hear more for years to come, please consider donating $1 for each episode. Every little bit helps to support this podcast, and anything more is donated right back to our community.

Erica

One of the most meaningful and totally free ways to show your support for this show is to subscribe, rate, and review. By subscribing to the show, you'll automatically get notifications when a new episode is released. And by reviewing you will help to make this podcast more visible to others. I can't express enough just how much your words of encouragement mean to me and the guests on the show. We share our stories with the hope of helping others and it brings us so much happiness to receive that personal validation from our listeners. We love it so much that we proudly share it on our website and social media. So thank you for all of your support. Your participation as an audience is deeply appreciated.


Erica

If you can relate to this content, and you're interested in guest hosting a season of your own, don't hesitate to reach out to me, you can reach me on the website at www.atypicaltruth.org. Or you can also find me Atypical Truth on Facebook and Instagram.



Recent Posts

See All