Growing Together Through Thick and Thin
Hosted by Erica Jolene and Kristyn Newbern, with friends Lauren Smith and Alice Dunlap
Transcription HERE
Early childhood friendships are pure magic. The innocence, the wild imaginations, the freedom of not understanding our limitations as tiny humans, and the ability to dream up BIG schemes. Play is such an important component of our children’s development, especially playing with other children. Luke is so lucky to have a group of core friends who are the children of his parents core friends, making the story of these friends like one right out of a fairy tale!
In this episode, Kristyn is joined by two close friends, Alice and Lauren, who share what it was like to support their friends through a difficult prognosis. They discuss how this experience has shaped their approach to inclusive parenting and the challenges they anticipate facing as their children continue to grow up together. They also provide some insightful advice to other friends and family members who may find themselves trying to show support from the sidelines. And finally, Kristyn shares a heartfelt letter to her friends, one that I think will resonate with many parents of children with rare diseases and disabilities.
#inclusiveparenting #disabilityawareness #disabilityinclusion #disabilityisdiversity
#friendship #raredisease #noonansyndrome
Episode Transcription
Kristyn
What do you think you're going to be when you grow up?
Luke
Ah, a pilot.
Kristyn
To fly airplanes?
Luke
Uh huh.
Kristyn
That's cool. Where would you fly first?
Luke
I'm going somewhere you have never been. It's called the taco place!
Kristyn
You're gonna fly to the taco place?
Luke
Yeah! It's really far away.
Kristyn
Oh man...
Luke
Even farther than that creek you guys drive through.
Kristyn
Wow, that must be some taco place. Hey Luke, can I come with you on your airplane trip to the taco place?
Luke
Umm Hmmm. You can be one of the pilots too.
Kristyn
Oh! We'll be c- pilots. And who should come with us on our airplane trip?
Luke
Hmmmm...
Luke
All our friends. All my friends on school.
Kristyn
Your friends in school?
Luke
Uh Hmmm. And Mr. Dylan and Mrs. Anine.
Luke
Mr. Dylan and Mrs. Anine, your teachers?
Luke
Uh huh.
Kristyn
What about our family?
Luke
Yeah! And Julian.
Kristyn
And your friend Julian.
Luke
Um Hmmm. And Xander too!
Kristyn
And Xander too!
Luke
Everyone.
Kristyn
Everyone should come.
Luke
Everyone in this whole Earth!
Kristyn
Everyone on the whole earth?!?
Luke
Uh huh.
Erica
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 they state that humans are storytelling beings. That's right. We all have a story to tell. And it is through these stories where the power of connection and community are built. Which is why I created this podcast to amplify the stories of the people in my community, the community of rare diseases, disabilities and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear stories from friends, family and professionals who advocate with us. Mike guest host this season is Kristyn Newbern. She's a fellow mother and caregiver to her son Luke, who was born with the primary diagnosis of congenital heart defects. And it was later discovered that this had stemmed from a variation of the rare genetic condition called Noonan syndrome. So far throughout this season, you've heard from several guests, who entered Kristyn's life in a profound way to help support her family as they navigated her son's rare medical journey. In today's episode, Kristyn is joined by two close friends, Alice and Lauren. Their friendship dates back to a time that they fondly describe as carefree long before the days when any of them were parents, or before they were probably even thinking about parenthood. Like a page right out of a storybook. These three friends experience many important and exciting life events happening merely in unison with one another. But life had different plans in store for Kristyn and Kevin and their friends. Well, they didn't hesitate to travel into unknown territory with them. So today, you will hear from Alice and Lauren as they share about their experiences of what it was like to support their friends through a difficult prognosis. They discuss how this shaped their approach to inclusive parenting. And they talk about the challenges that they anticipate facing as their children continue to grow up together. They also provide some insightful advice to other friends and family members who may find themselves trying to show a loved one support from the sidelines. And finally, Kristyn shares a heartfelt letter to her friends, one that I think will resonate with many parents of children with rare diseases and disabilities.
Kristyn
I'm so excited to talk to you all tonight. Actually. I am generally via group text talking to you both most nights. I'm very excited that you're both here tonight. Since our listeners don't know you very well, if you would both be so kind as to introduce yourselves just so everyone else has an idea of who they Hearing from
Lauren
Yeah, sure. So I'm Lauren Smith, currently based in St. Louis, Missouri with my husband Pete. We have two kids, a two and a half year old and then a newborn about six weeks old. So my life currently is enjoying maternity leave. And really being outside in the summer months has been awesome with audiobooks on my walks is my new my new jam. When I'm not on maternity leave, I work at Cigna Health Insurance in an HR role for almost eight, nine years now. So at the same company right out of college. So yeah, that's a little bit about me.
Alice
Hi, my name is Alice Dunlap. And I'm also a mother of a three and a half year old. My husband and I and our son, Julian live in St. Charles, Missouri. And we also have a dog named Artemis, who I always say is my first baby. So we're very lucky to have him too. I work in communications, I've been in the communications field for almost, I think over nine years. So I definitely enjoy listening to podcasts, and anything, multimedia is definitely really exciting to see this process and get to know my friends in a new way.
Kristyn
So I'm so excited that you said that, because that is what tonight's conversation is all about, is having these conversations. You know, it's so funny, we see each other all the time, and we talk to each other all the time. But how often are we you know, really getting into these kind of details or having this serious, I guess of conversation that's not about, you know, kids stuff, or shows or fun, new trends that we've heard about. So I'm excited to loosen us up a bit. Let's have some rapid fire questions. So Alice, if you were given a fully stocked RV and a week to spend in it, where would you drive,
Alice
I would pack up my family and go to South Dakota, and then over to Yellowstone. I did that trip with my grandparents as a kid. And it was just such a great memory that I have. And I I hope to do something like that someday.
Kristyn
I feel like that's totally something that I could see you and your family packing up and taking that road trip. I think that's great. Lauren, what TV show brings you right back to your childhood?
Lauren
I would say Saved by the Bell.
Kristyn
That's great. Honestly, I feel like 90s Fashion is so trendy right now that it automatically brings me back to those TV shows. Full House and Boy Meets World and saved by the bell. I love it. Alice, what is one thing that you are presently grateful for?
Alice
Modern day science. So thank you for that. I don't think three years ago, maybe even four years ago and ever think I'd be saying such a thing, right? But very grateful for modern day science. I would say.
Kristyn
I couldn't agree more. For so many reasons. Lauren, what is something that you are presently grateful for?
Lauren
I am grateful for time away from work to spend with my family right now. It's, you know, kind of that hustle bustle of work, and it was stressful. And then this maternity leave give me time off and refreshed and so very grateful that I have paid maternity leave that I'm able to leverage.
Kristyn
That is really cool and so deserved. And everyone should get more. But I'm glad that you have this time to this very special. Alice and Lauren leading up to this conversation. I was thinking a lot about our friendship over the last 1211 years, and just how much we have experienced together. We've seen milestones in each other's lives. It's it's been a lot. And I honestly don't know if I can remember the first time I met you both. Do you guys remember?
Alice
I feel like I have a memory of talking to Jake about each of you my husband Jake, just thinking like, oh, okay, she's so nice. I'm so thankful. Like I remember those moments, but I can't remember like the moment or the first conversation we ever had.
Kristyn
No.
Lauren
I, I'm not sure.
Kristyn
It must have just been so natural of a fit that we felt like we've always known each other. Regardless of when the very first time what that we met was, it was during college when we were all dating our now husband, my husband, Kevin, and your husband's Pete and Jake, have all been friends since grade school. And in fact, they have a very close knit kind of large group of friends from middle school and high school that are still very close to this day. This is still pretend, you know, hopefully, very early in our marriages, and we still have so much left to see with parenthood and our friendships and everything. I remember back to those early days of our friendships, weekends home from college, or during the summers when we'd go to friends, houses, concerts, parties, we sure lived that early 20's carefree and fun life back in those days. Some of my favorite memories from those days was from when Alice you and Jake lived in Sioux lard, which is a very fun and eclectic neighborhood in St. Louis, that has a very vibrant social scene. I can't tell you know how many times we hung out in Zillow, but I just remember that always been such a fun time and like piling into your apartment. Or the time we bought random bikes from I'm free. I was Goodwill or something. And we just like rode these children's bikes all up and down the streets. I don't know. It was just so much fun and so many great memories. I was wondering what one of your favorite memories from our early friendship days was.
Lauren
I really have to tackle on to the CLR like there's so many memories in like my two door Honda Civic just driving downtown with Pete. But he would pick do the parallel parking because the parking was hard. Okay. But you know, if I were to pick certain events, I think it would be Sealord Mardi Gras, when we didn't care that we were cold for hours waking up early and having a fridge full of jello shots. And also, we used to do like beer tasting events with this smaller shot glasses. We haven't done that a long time. But I thought all live kind of the tasting events were fun outdoor experiences. way fun.
Kristyn
I had forgotten about those two that we should we should have a wealth of bring it back. Yeah, a throwback party that I like that idea. Okay, Alice, you've got two votes for Su Lord, what is your favorite memory from our early friendship days?
Alice
No, I feel like Jake and I was just talking about how we just like definitely live like nothing was holding us back. And like we always joke that we were just so poor, but we still had so much fun. Somehow it just all worked out. And one of you had mentioned packing into our apartment like it literally was like sardines, because our apartment was so small. So I definitely I we definitely cherish all of those memories. And we're just so blessed to have had that experience because we never really left St. Louis neither of us did. So we always joke about maybe retiring down there later on in our life. But we'll see about that. I'd say like one thing that I definitely miss and I feel like was just always a great time was that like, late at night, we would go to diner, somehow we'd get there and we'd eat a bunch of food and we just have so much fun. And then we'd have to walk all the way back to our apartment because it wasn't very close by, like where we lived, it was close enough for us to like, have the courage to walk there and walk back. But some of the best times I feel like was just go in there and hanging out. We would always have different people around the table. I feel like depending on who came came out for the night. So I'd say those are some of my best memories down there.
Kristyn
Such great times. And you're so right. What did we even spend money on in those days? Like what what issues did we even have? You know, we were in that carefree life. So much fun. We've seen relationships, engagements, houses, jobs, dogs, weddings, and now kids enter into our lives, and our friendship all within a relatively close timeline of each other. Truly not by design, but also probably not entirely by chance either.
Alice
You know, I was thinking earlier when we all first started getting engaged at our weddings. And I couldn't look at a calendar to confirm this. But I remember having conversation Kristyn, I think with you at one point where between the three of us, the three of us all were engaged within six months of one another. Then we also had our weddings within six months of one another and I just thought that was such a coincidence but you pointing out the fact that we have this line of this timeline is I feel like definitely within nature frame Joe.
Kristyn
So true! People in the outside looking in, they probably have some questions for us like, Okay, did you all plan this or what's going on here. But on the record, it was not outwardly planned, just kind of worked out well. If we rewind a bit, though, back to 2016, Kevin and I were one of the first couples in our larger friend group to get pregnant. It was surprising for us very exciting and a little unnerving to find out that we would be parents who knew very few friends our age who already had kids of their own. I remember how we told you guys that I was pregnant the first time. We were celebrating Fourth of July that year and we were taking this big group picture. And instead of "cheese," Kevin yelled at "Kristyn's pregnant!" I still have those pictures to this day of catching people's reactions and their surprised faces. I mean, it's truly priceless. I had so much fun pulling off, it was a lot of work. But I had a lot of fun pulling off that surprise on you guys.
Lauren
I was surprised. And it was, it was super fun.
Kristyn
We really enjoyed pulling off that surprise on you all. But of course, there were some surprises in store for us. And the last 10 weeks of my pregnancy, after finding out about Luke having congenital heart disease, I will admit it turned into a complete blur. And for some reason, telling our friends and family, which you might think would be the easiest part of of those 10 weeks and planning and preparing for Luke to arrive. That was actually one of the hardest parts for me. And I remember telling you, you both and our friend group, about Luke and about what we knew at that point would happen once he was born. But I was wondering first, do you remember when Kevin and I first told our friend group about Luke's heart? What were your first feelings or maybe your internal responses hearing that your friend's baby would be having a heart surgery as a newborn?
Lauren
I do. Remember, we went to just the four of us went to a restaurant out in Chesterfield, just kind of rare that it's just the four of us and not, you know, a larger group. But maybe that was by design. And I remember you telling us about about you know, this and you found out, you know, after halfway through your pregnancy and my initial thoughts, were just like, Okay, this is super scary, but it's probably not that bad. Right? Like, it's just, it's something they'll get through it just like you know, it, nothing bad can happen to my friends. Right? So I remember leaving the conversation, like, worried but, you know, definitely not understanding and definitely doing some Google searching, but not knowing how to spell the words that you were saying to me after I left, but you know, my initial thoughts were? No, it'll be fine. It's not that scary, and, you know, come to fruition nothing that I would have ever expected and way worse than I could have imagined when I first found out.
Kristyn
Don't worry about spelling the words wrong. I was probably mispronouncing them when we I mean, I don't think any of us knew what we were in for, to any degree point. So that makes perfect sense. What about you, Alice?
Alice
Yeah I...I feel like I recall Kevin actually explaining it, or like at least introducing the conversation, which was completely unexpected. And I feel like I just really couldn't even really grasp what we were learning. Just because it was such news. And, and you being really, I would say one of the closest friends I'd had that time who'd gotten pregnant. Just like really understanding what the outcome was going to be. It was just really hard to appreciate in the moment. And then of course, having conversations with Jake afterwards, just like processing, really what we knew you were going to be facing and hoping for the best for your family. It was just I would say just shocking, right? Totally. I feel also like, because at that point, you've kind of been a little bit farther along in your pregnancy too. And I know, I just thought like, I can't believe they've been having to deal with this alone this whole time. But then also, when is it a right time, at that point in your pregnancy to even share that information when you're just probably also trying to figure out what's going on yourself.
Kristyn
It is such a flaw of mine, that I have a very hard time delivering bad news, especially when it is my bad news. especially back then when I up to that point had had a lot of bad news to share. And so, in my mind, I thought maybe we wouldn't even have to tell anyone. I mean, it sounds, it sounds ridiculous now to think about that. But I was kind of on the same wavelength as Lauren where I was like, okay, but he just needs a surgery, right? And so we'll just get through that. And then we'll come back home maybe a couple of weeks later and get on with our lives, right, we've found the problem, and we will fix it right. So I think I was still you know, in a space where I didn't even have that self confidence to really, I don't know, bum everyone out, if that makes sense. I just I remember, that was such a traumatic thing for me to go through even though it shouldn't have been. But I don't think I've ever asked either of you how that was for for you.
Kristyn
So of course, when Luke was born, the real blur set in for me, I remember recovering from the unanticipated C section while living on a NICU couch at Cardinal Glennon and getting a crash course in becoming not only a new parent, but a parent of a medically complex and severely sick kid. I also remember both of you visiting us in the hospital multiple times, bringing dinners and sending awesome care packages. I honestly was in such a state that I couldn't even tell you what we talked about when you would visit us at the hospital. But I do remember appreciating your company and feeling not as alone, because you guys came. So after we came home from the hospital, you also saw Kevin and I attempt to have some semblance of normalcy and a very turbulent first year of Luke's life. We had medication schedules, and feeding trainings and techniques, we had appointments, illnesses, and of course, another open heart surgery all within that first year. And I'd like to also point out also during very pivotal times in both of your lives, and while both of you were, you know, considering having kids who are selves. So I'm curious, how did our medical journey impact you during these times? And, you know, did you feel differently about parenthood in general? Or were your conversations about growing your families? Were they different? Do you think or I guess, changed because of our medical journey?
Alice
Yeah, I think, seeing what you and Kevin really endured and really stepped up and dealt with, with grace, honestly, I think it just made me more aware of the possibilities. Some of the scary possibilities there are in just even conceiving a child, I mean, just in hopes of even, I would say, becoming pregnant, you never really even know what you could be facing with that. And so I feel like seeing your experience definitely made me more aware of every step of the way. And also, I think, leaning on you for advice, every step of the way, because I felt like you knew so much because you had been through one hell of a journey with more than enough things to think about. But I just I felt like I was definitely more aware of the possibilities and really thinking about when we found out we were having a boy, Kevin lit the fireworks for us. And I feel like the moment that we knew we were having a boy, I just knew that our lives would be different from them. Maybe we just be we'd be connected differently, knowing that we would have been raising sons together.
Kristyn
And just for all the listeners that that's literal fireworks that Kevin Kevin set off. Or I guess smoke bombs, right, where it was the blue smoke, right?
Alice
We had smoke and fireworks in a field. (all laughing)
Kristyn
A field that caused no fires and was very safely done. Man, what a good memory that was. I have forgotten about that. So true, though. Lauren, how did our medical journey impact you during this time? You know, before
Lauren
Before you and Kevin, you know, got pregnant and told us about you know, what was to come? I haven't experienced anybody, you know, sharing anything with difficult pregnancies and medical, you know, complications and complexities that they knew about ahead of time. Right. And so I think knowing that in, you know, definitely more aware, as Alice said, and, you know, I really think even halfway through my pregnancy, I feel like the 20 week mark is when maybe you told me that the ultrasound you discovered the heartbeat. And so going through my first pregnancy, that 20 week, ultrasound was really important to me. I think I've asked the ultrasound tech to like, okay, the heart, what does it look like my, you know, friends had discovered this, like, I know that sounds selfish, but I, you know, I could read I really felt like in that appointment, I was like, okay, but like, check this because I know it can be, you know, very severe for certain for certain kids. So definitely more aware that it's not always helping babies from the get go. But, you know, seeing Luke today and where you know how much he's grown. It's, it's remarkable and seeing you and Kevin are like the strongest people in the world. I, I don't know how you do it. But you guys are rock stars.
Kristyn
Oh, you two are a big part for sure. And by the way, that double checking in the ultrasound, not selfish at all. Totally smart. In my opinion. I remember like pre finding out all this. I remember like getting the genetic bloodwork done, simply to find out the gender early so that I could start planning the nursery. I remember when they called and told and told me the results. And I kind of blew off their words of okay, and all of the genetic testing came back normal and everything looks really healthy and good. And I'm like, yeah, yeah, boy or girl, you know? Your, your perspective changes totally when you when you learn about some of these possibilities, for sure. So not selfish, smart, I think. So each of our kids are about the same age, or at least our firstborn sons are all in a very fun age group together. Some of my favorite recent memories have been our boys playing in each other's backyards, and all of us just kind of hanging out and watching them and, you know, telling them to put something down or not go that far, just kind of watching them and generally in awe of everything they're doing. I want to take this time first to acknowledge that you both have been so thoughtful in your considerations for Luke, you know, be it the physical restrictions that he's had over the years, and maybe, you know, discussing or determining what activities might not make sense for him at any given time. But I was wondering, has Luke's diagnosis impacted your individual approaches to parenting? And you know, maybe not yet, they're still quite young. So do you think that it will, as Julian and Xander get older?
Lauren
I definitely think it will. So for myself, I'm still figuring out how to parent and how to teach Xander my son, how to share how to be nice, they think you you know, you're welcome. So I think we're in the early learning stages. I just want him to be respectful, and I want him to be helpful. And I want him to be kind. And I saw that's on me to raise him to be, you know, welcoming for, you know, anybody at school, you know, between our friend groups, you know, all the kids and I think with, you know, Luke, yes, but all the different age groups, right? So everybody's going to be at different points. And it's, we're not going to single a Luke out for anything.
Alice
Yeah, so I feel like just in terms of, you know, our friendship and having Luke in our lives, such wonderful soul that he is, I have thought about how I might have to eventually navigate conversations with Julian about Luke, especially just as my son gets more verbal. And he's just so curious about everything. And so I just anticipate having to prepare for those kinds of discussions with him and being able to answer any questions you might have. And hopefully, at that time, even maybe bringing your family into the conversation too, and even maybe empowering Luke to talk about it at times too. So definitely have thought about all that. And I do think that, you know, we live in a world where inclusiveness and kindness, I would say are just a lot more visible and talked about than maybe when we were children. And I just really hope literally to mirror what Lauren says, I just hope that we're reading joy and to be kind and respectful to really any child or adult regardless of any kind of restrictions they might have or what they might be struggling with. And I think and how Julian is going to be meeting new children outside of our circle of friends or our typical environment. Just it's telling him that you don't know what someone might be struggling with, even if it's not visible. But there's a lot more to a person than what you might see. And just still living with respect and kindness in all in all ways.
Kristyn
I'm, I'm so glad that you brought that up, because that's something that with Luke, that's something we're trying to navigate. Now as he's kind of entering into the school age world, right. And so we're trying to navigate that his medical complexities, his disabilities, his challenges are not immediately visible. But they are physical in nature. And so, so we are getting to the age where kids are very verbal and very curious. And so that's, those conversations are happening in our house. Okay, so when do we how do we bring Luke into this conversation? How do we empower him to take ownership, but oh, my gosh, I have no idea what to do or what the best thing is so. So there's, it's, it's a learning curve for all of us. And I would welcome either of you, or your children to ask me questions, or Kevin or Luke as as the boys get older, I think that's a great idea. I mean, childhood is full of surprises and challenges for any kid. And I'm sure every parent worries about their kids as they grow older, as they're getting more independent heading off to school going out in the world. Sometimes I wonder if my seemingly constant anxiety for Luke is because of his medical diagnosis, or more reflection of my own parental struggle to cope with this ever fleeting time in our lives? So I was wondering, What do you fear or worry about most for Xander, or Julian, or for Luke, as our kids grow older together?
Alice
I would say that, I worry about them maybe growing apart as they become their own people, and maybe start having other friends, and other activities or hobbies or likes or personalities that they don't even necessarily have today. So I really just hope that we can continue to keep them connected. And really learning from one another. I will say that one thing that I do fear, in that it will just be extremely difficult is maybe having to explain to my son Julian definitely has any setbacks, even thinking about how that would impact Julian and you know, his emotions and questions that he might have. And if you have questions that I might not be able to answer. And I think that that is something that being a parent, you have to be prepared for. Even if we didn't have a Luke, or Kevin and Kristyn, and Ozzie in our lives, just thinking about the conversations you might have to have about anybody having medical issues or setbacks, because you know, our parents are getting older, we have so many friends, and thank God that everyone is healthy and happy. But I would say that one of my fears is maybe having to have some really difficult conversations and really thinking about the possibility of us having this talk about Luke and what he might be going through, and just having those conversations with my son that I never really thought about having to have with him as a child or as a teenager, or at any point in your kid's life.
Kristyn
Especially good point. I mean, we, the kids are growing up and developing their own personalities and their own responses and questions about the world and the why is are hard to answer in this world that we have found ourselves in. So I think that's, that's a great perspective. Lauren, what are you worried about as our kids are growing older?
Lauren
Sure. So I definitely echo a lot of what Alice has has mentioned, right now, you know, we're all in three different school districts. So as the boys get older, I imagine that you know, they will make new friends will have new events to go to on the weekends. So I fear that you know, from a mom perspective, wanting to hang out with their friends and have that part of her life, that's very important to keep, I fear, some of that will kind of you know, fade. So, what I've come to realize is, you know, you can't just have it all about your kids, you have to have your me time right. So that's also important and you have to have your spouse time and not to compartmentalize you know, your life but I think you do have to, you know, leave time for other things besides, you know, your Kids 100% Just to keep you at your healthiest and happiest place.
Kristyn
That's something that has been difficult for us to prioritize. And it is so important. I mean, even, it's important for your kids, for you to have time for yourself and you know, time for each other. So I'm, I'm glad you brought that up. I mean, you both have been there long before in my world long before these little munchkins came into our lives. And in really, throughout all of our kids lives, we have been able to be so close and stay so close, and maybe grow even closer to each other. What in the last five years has surprised you to about being so close to a kid with such an extensive medical journey?
Lauren
I guess what I you know, Luke is the smartest kid ever. He is so personable. He's the sweetest, kindest human being. And he is so sweet. And it's just Luke.
Kristyn
I love that. He is He is such a, he is almost too smart. He like outsmarts us sometimes. And, you know, I fear that being only for that is only going to accelerate. So we have a lot coming to Alice, what has surprised you?
Alice
I would say really, what surprised me about being close to Luke and seeing what he's been through is just the strength, that someone who was so young, can muster up to face any and all challenges. It's just I think, when people say that kids are resilient, I think that Luke is just really embodied that and even Kristyn, you and Kevin, like, I would say, just looking at my perspective of us friends, that you would have strengths that I will never even see because they might be behind closed doors, or in medical offices or in a hospital at the bedside, just the strength that I think we witnessed from the two of you is just like, definitely change our perspectives on who you are, and our friendship, and even just the advocacy. Because I do think that Kristyn, if I ever have a problem, I will be talking to you about it. Because you'd be like the best person to model how to advocate for myself, or my family.
Kristyn
You need me to you need me to make some calls because I can make some calls for you. You don't even know how much both of your responses there means to me, I I'm just blown away and truly having the support systems. I mean, I'm not just saying this because we're having this conversation now. But Kevin and I talk about this all the time about how there's no way we could have kept everything floating. And you know, juggled everything. If we didn't have the support system of our friend group and our very supportive families by our side this entire way. There's, there's without any question, there's no way. So I would say that our strength is reflected in yours as well.
Kristyn
And finally, I wanted to end by having both of you address the theoretical next person who finds themselves hearing from a close friend that their baby has a life threatening life altering diagnosis. What advice would you give those friends, knowing that so much is about to change about their friendship, and that everything in the world just changed for their friend?
Alice
My advice for the friend or even maybe an extended family member of someone who is going through what you and Kevin have faced since before zero and before birth or whatnot, you know, I would say that, as much as you definitely want to ask about maybe how the baby is doing or how the child is doing that really just checking in on the parents themselves is probably a good thing to do too. Because I feel like as much as I know, you have to keep it together. I know that there's probably things that you're also struggling with outside of just worrying about the physical things that your child is dealing with. So just think of the parents too, and I would say their emotional well being. I feel like I've tried to do that as much as possible. And really, I would say, everyone I feel like probably says like I don't even know what you're going through. Having to face this. I don't even know how to put it into perspective for myself what you could be facing but I think saying that and then just letting your friend who's facing this journey know that you're there for them to listen at anytime they're comfortable or want to reach out for help, you're there and that you're just there to cheer them on even. Because I think just in terms of not maybe necessarily even being able to be at the hospital or especially within like, last week, right after Luke had his last surgery, even we really weren't. I mean, there was a time where he had to be away from people, which meant that you guys really had to be away from people before he even had surgery. And then he was, I think, got able to have certain his last surgery. And when he did, and then we weren't able to see him for so long. Like, even though there's that physical distance between you and maybe this person who's facing such a battle like that, you're just there to cheer them on from any sideline that you're at.
Lauren
I don't want to speak for you and Kevin, but I'm sure you feel a ton of support around the big events, right, like the open heart surgeries, the three, you know, so I know there's tons of milestones in between those times that you probably do need support, right. And so I guess my advice would be is to, you know, don't just check in for the big times, but continue throughout the journey, to be there, be there for your friends and provide support. And that's probably the times that, you know, maybe you can see each other in person and do more for one another. And not just the big ones.
Kristyn
I appreciate that so much, because it is it's so true for these bigger events, it's, you know, all hands on deck, and we got to, you know, get the church prayer group going, and we got to get the, you know, calls going, who can buy dinner, and it's also appreciated, and it's so beautiful that that happens, and that people can come together, you know, for these events like that. But there's the daily struggles that happened to or the anxiety about something coming up, or like you said, those, those six month cardiology follow ups are a big source of anxiety for for me and for Kevin. So it makes a huge difference to have kind of that constant support and resource.
Alice
I I feel like when Luke had his last experience, and knowing what could possibly be happening to Kevin and Kristyn at that time, too. I was extremely scared, because I honestly was thinking to myself, what is going to happen? And I don't think like I had ever, throughout all this ever doubted staying on the bright side, or I never found it difficult to stay positive. But I do feel like that was a moment where I was extremely scared, and had to just like deal with that. And I hadn't had to deal with that before and thinking about what the hell is going to happen? What could happen. And I would say that is a moment for me where I definitely had a reality check. I feel like what Kevin and Kristyn, but what I hope that they can get out of our friendship is that we are here to reassure them. And I think in some ways, there's setbacks to that, because I know that there's probably some, like really intense and real conversations that we could have had throughout all of this. But I know that I want to be that reassurance and positive energy that they might need at any step of the way.
Lauren
You know, part of part of their journey too is Alice I would start a different text and rally together and what can we do so I think you've been relying as friends outside of the situation rallying together and you know, sending positive vibes and reassurance uh, you know, I think as friends on the outside, bouncing, you know, the positivity off each other, that kind of helps. Leaning on friends together is kind of what helped.
Kristyn
Oh my gosh, I like I can only imagine the conversations that YouTube had to have behind the scenes of holy cow. What are we dealing with here? So in really it goes back to my other self acknowledged flaw of whenever things get really intense and, like you said, very uncertain and very scary and all that I I tend to internalize everything, and I tend to communicate less and maybe just try to like focus all of my maybe I'm just focusing all of my energy in that moment, on the situation at hand. And really, I think now about what that must be like on the receiving end or on the non receiving end during some of those surgeries or those impatient, you know, those really intense times, and what it must be like to kind of text each other and be like, what do we do what is going on. So, um, so I can definitely appreciate that. I will say, though, that I remember one time specifically being impatient after one of Luke's surgeries. And it's, you know, totally isolating and suffocating and yet isolating. I don't know how that's possible. But I remember one time getting a surprise, a care package that you put together that you to put together and it had like, activity books, and snacks, but not your typical snacks like cool snacks. And I forget what else but like little self care things for, for, you know, overnight trips and stuff. So it was just one of those things that I just I think it was the first time I had smiled in a long time. But it was just so it was just so thoughtful and knowing that like I wasn't present for you guys at that during that time. And yet you still took the time and energy to do that for me. And I don't know, like you said, Allison brought that, that kind of that relief or that reassurance, you know that they're there, there is an outside world and they do still care and think about us, even if I am not providing that support back at that moment. Or even if I can't, I can be 100% Real with what we are going through what I'm worried about where we are in life, and you too, are there and present and available and supportive. And you bring out that positivity in either that situation or in other situations that can help me kind of get through something, I don't know you bring that positive energy to it while respecting the beauty of it, if that makes sense. I did want to end with just a short note from me to all of the friends and family and support people out there. The safety nets as we call them, and truly to both of you. Thank you. Thank you for having grace when I bail on plans last minute, thank you for forgiving when I forget something that I shouldn't, or let something fall through the cracks that I wouldn't have before. Thank you for bringing me peace, support, or even stacks some of my darkest times. Thank you for still trusting me with your stories and feelings and experiences. Thank you for learning about this terrifying diagnosis with me. And finally, my role in this journey did not come by choice. But you have made the choice to stay in it with me. So thank you for choosing our friendship. And Lauren, Alice, thank you so much for this conversation tonight and for joining me on this podcast.
Erica
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Eria
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.
The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collective Amiina. The cover art for Atypical Truth was designed by Eric McJilton.
