CLIPS FROM WHAT IS TO COME IN SEASON TWO
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
Preview of what is to come in Season Two with the special guest co-host, Kristyn Newbern. Kristyn is a fellow medical mom to her son Luke who was born with a congenital heart defect and later diagnosed with a rare genetic disorder called Noonan Syndrome.
Throughout this season, Kristyn shares with us about her journey into life as a heart-mom. Through conversations she had with many people who have made a lasting impression on their family throughout their complex medical journey, we learn more about living with Noonan Syndrome, the life of a cardiologist, “sci-fi-style” family planning options, the importance of early childhood therapy services, the beautiful evolution of friendships, the power of love, and the strength of Luke’s tribe.
Links related to this episode:
Eric McJilton at Fountain City Tattoos
Pre-Implantation Genetic Testing
Episode Transcription
Erica 00:15
Welcome to 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 rare diseases, disabilities, and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear the stories from friends, family, and professionals who advocate with us.
Erica 00:44
As I have hinted to in the past, in the future seasons of Atypical Truth, I will be joined by a guest host who shares with us stories about their lives and conversations with people and professionals who have had a significant impact on them.
Erica 01:00
As you may have noticed, the cover art for each new season will change. I have had the special privilege of working with my friend Eric McJilton, who is a tattoo artist at Fountain City Tattoos in Kansas City, Missouri. He is the mastermind behind the beautiful cover art for this new season. Eric and I have a long-standing friendship that dates back to a time in my life when I was taking artistic ownership of the scars that cover my body. Our friendship really has a special story. But that is one that you'll have to hear about more in a future season.
Erica 01:35
Needless to say, I was thrilled to have his partnership in designing a special image to encapsulate the story of our season special guest host and this is no easy task. I am so impressed by his ability to take a list, or really a novel, of meaningful things that are unique to the life story of each new season's guest host. And like magic. He constructs a work of art that represents their story so beautifully.
Erica 02:09
To help support this podcast and this special gift to our guest host. You can find Season Two merchandise like apparel and other goodies at our online shop.
Erica 02:23
Okay, y'all, I am so excited to release Season Two of Atypical Truth. For the past six months, I believe, I've had the special honor of creating this next season with Kristyn Newbern. Kristyn is a fellow medical mom to her son Luke, who was born with congenital heart defects and later diagnosed with a rare genetic disorder called Noonan Syndrome. As Kristyn describes, Luke's rare condition - it involves a lot of interconnected moving parts, which require ongoing routine care and treatment from a variety of specialists. Kristyn and I met through volunteering at our children's hospital in the Parent and Family Advisory Council. This is a council consisting of a group of patient family members who meet monthly with the goal of improving the patient and family experience at the hospital. I just want to say right here, that if you're not already aware of groups like this existing in your hospital, you should definitely check into it. It is an amazing way to meet and connect with other families, while also working to improve the often stressful experience of being hospitalized.
Erica 03:41
Kristyn and I met through this group and we quickly became friends. While our experiences are different in so many ways, we both understood the challenges and triumphs of life as parents to a child with a rare condition. Getting to know her and learning more about their story, I couldn't resist asking her if she would consider doing a season of her own. I was so relieved by how excited Kristyn was to join me as a guest host, which was so brave of her because this was long before either of us knew exactly what that would entail. Throughout the season, Kristyn shares with us about her journey into life as a heart-mom. Through conversations she had with many people who've made a lasting impression on their family, we learn more about living with Noonan syndrome, the life of a cardiologist, sci-fi family planning options, the importance of early childhood therapy services, the beautiful evolution of friendships, the power of love, and the strength of Luke's tribe.
Erica 04:54
Nothing could have prepared me for how amazing this entire experience turned out to be. It is truly been an honor to produce the second season with Kristyn. So here is a taste of what is in store for this coming season.
Kristyn 05:27
I will forever say that there were seven words that split my life into two parts. And it was that Fetal Care Doctor walking in and saying, "There's something wrong with your baby's heart." And then everything since that sentence has been kind of Part Two of my life, and the start of my life as a medically complex mom.
Kristyn 05:55
And I will also say, too, that no amount of preparation will ever prepare anyone for the experience of living that life, of being in it. So I mean, I was probably two heart surgeries in before I really understood what was going on, and what impact this would have on the rest of Luke's life, and my life, and everyone around us.
Kristyn 06:22
So research became my coping mechanism or my preparation tool. But really, I just kind of guarded myself or built barriers I would say, emotionally, rather than facing any of the emotional preparation that I should have been doing as well. If that makes sense. So, and looking back, you know, hindsight is 20/20. Right? It's easy to see that I was doing that. But at the time, I thought, I was I mean, I had my files stored. I had my annotated notes, I had questions and everything documented, and everything was in my spreadsheet. And so I felt prepared as if this was a new project.
Kristyn 07:13
Throughout this journey, I have met many heart-parent friends. And many of these parents are at the very beginning of their journey, and I see so much of my own self in them. So to them, I might give the following advice, which would be that your role as the parent or as the caregiver is to pay attention. You need to learn what you can, but also understand that medical professionals are highly educated in their field. And while they might be experts, they are not undivided in that attention, right? You, as the parent, or caregiver are the only one whose only patient is your kid. And for me, I learned that the best way to support Luke in the hospital or throughout his journey is to be supportive of his medical team by being a consistent advocate for him so that we can provide the best care for Luke together. And then I would also tell those fresh new medical parents that you can not control this diagnosis. No matter how much research or how many articles you read, you need to define the things that you can control, and as you experience them. So you can control the care. You can control the love the attention that your child receives on this journey. As a parent, you are powerful, but you are not a higher power. And there is a lot of peace that comes with accepting that.
Erica 09:10
Oh my gosh.
Kristyn 09:13
If only, if only I had such clarity at such an earlier time. It is something I still need to remind myself of.
Erica 09:28
See what I mean? Oh, I am so excited for you all to learn more about Kristyn and Luke. In the weeks to come you will be hearing from Kristyn herself as we talk about her entry into life as a medical heart mom. She shares with us in detail about the evolution of herself and her family as they navigate the diagnosis of a rare genetic disorder. Following Kristyn's personal episodes, we will be hearing from a number of incredibly special guests. First up, we get to talk to Katie Palmer. Katie is an incredible young woman who works as an international advocate for children and families who are living with Noonan syndrome. Katie provides a unique and truly helpful perspective of life as an adult living with a rare disease. In her episode, she answers questions from families and children in the Noonan syndrome Facebook group, where she has become an empowering role model for people all over the world.
Katie 10:38
So like, if I can just leave this with parents tonight that they can hold on to hope that the child is going to get where they want to be. Or if your child does have developmental delays, which is going to impact them later on in life...just because they can't get an ordinary job per se, shop assistant, or school teacher, or admin. That doesn't mean they are not going to get a job, and their not going to achieve whatever they love. That doesn't mean that you're not going to become the next author. That doesn't mean anything are not going to become in next digital drawing, whatever these things are caught. That doesn't mean that.... like Erica, that doesn't mean that they are not going to do their own podcast. They can achieve something. They can just have to hold onto hope.
Kristyn 11:28
Oh, that is just...I'm sorry, I'm just trying to get hold this together. There's just so, that's so wonderful to hear. And yeah, thank you.
Erica 11:54
Isn't she just the sweetest? I'm so excited for you guys to hear more from Katie. Next up, we have the privilege to hear from Dr. Reddy. Dr. Reddy is a pediatric cardiologist at Cardinal Glennon. Dr. Reddy shares both her personal and professional experiences in the field. This episode really gave us a behind-the-scenes look at what a day in the life of a pediatric specialist entails. And on a personal note, it gave me all the feels to hear her describe both the importance and her genuine interest in hearing the details of a patient and family's story. You're gonna love this one.
Dr. Reddy 12:37
For my, it really is, you know, I always I know I've probably mentioned it to you as well, to me, it's plumbing in a way. And so conceptually, it's a lot, it's fun to kind of think through how the bloods moving through the heart what we need to do to fix it. And it's a little bit more black and white than a lot of other peds specialties, which helps I think with my personality as well. And then, you know, around that time, or I think a little bit after my nephew actually was born with a heart condition as well. And I didn't know much about it initially. And then kind of got to know more about it and kind of learn about it. And so that sort of all came together.
Dr. Reddy 13:25
I like hearing it from their perspective first too because there are things that they notice or picked up on that is interesting to the story that I wouldn't get in the medical record. You know, things that they noticed or things that they, you know, they know are particular about their child or how they react to certain things that would be interesting. So I normally take notes first. And then as much as I can go back through records and try and kind of piece it together. For me, it's important to know, you know, all the details. And it's also, you know, part of their journey because I even every kid and every kid's heart lesion is different in the course that they take. And so knowing what's worked in the past, what hasn't worked, and all the hiccups that have happened along the way, I think are important to know how you move forward. And but I feel like it's really more important for me to just, you know, learn the chronologic story of their of the child's life and their health history from the parents perspective because it is a journey, it is a story and the medical facts are definitely pertinent, but it's the it's the subtle kind of in-between things. You know, their reactions to anesthesia, how they deal with IVs. have they had bad caregivers? You know, have they had a health care provider that didn't address the need that they had or, you know how to a bedside manner that didn't work for their child who didn't work for them as a family is important as well because, you know, I've learned everybody takes information whether it's good or bad in different ways. And so that's always been helpful to hear, sort of how their interactions and their experiences in both the critical care setting or just in an inpatient hospital setting as well.
Erica 15:01
As a parent to a child with a rare genetic disorder and medically complex condition, it is extremely rare to have existing peers in your life who understand your journey through their shared experience. Kristyn was lucky enough to have such a friendship with Nichole. In these episodes, we get an inside look at how an acquaintanceship evolved into a strong friendship through the shared experience of being parents of children with congenital heart defects and rare genetic disorders. We also get to hear more about their perspective in their decision to pursue what Kristyn jokingly refers to as sci-fi family planning options for future children. And I just want to say this, every medical parent deserves a friend like Nichole.
Nichole 16:00
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. I didn't know anyone from like my real life, nobody that I truly knew. 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.
Nichole 17:06
So I first want to go back to that thought on the candor that you and I do share. Like, we 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. And I think, I think part of that just comes from between the two of us, we've been through enough experiences that we know that this is, this is our life. And there are some very difficult points to this. I think any parent who has a medically complex child, we know we know what we're facing. A lot of people will try to kind of sugarcoat or be gentle about this situation. 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.
Nichole 18:31
And I think a lot of it comes from to like, it isn't 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 be ok with the uncomfortable. That's really where it gets real and makes connections that make it feel normal again. It allows you to have a normal conversation about your grievances. Whatever the day has brought, everybody has them.
Erica 19:16