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.
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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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Oh my gosh.
If only, if only I had such clarity at such an earlier time. It is something I still need to remind myself of.
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.
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.
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.
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.
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.
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.
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.
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.
Understanding that the field of genetics is both intimidating and impressive. We had the honor of hearing from the most eloquent of genetic counselors, Marissa Andrews, as she shares with us about her decade-long career as a pediatric genetic counselor, and now her role as a genetic counselor in the world of fertility. Her episode is a two-parter because like the field of genetics, there's just so much information to take in. And Marissa does a really amazing job at providing us with her insightful perspective. I will say this, I had opinions going into this episode, but I remained open-minded and I am so glad that I did because her story really hope to educate me and challenge many pre-existing concerns that I had. I hope you leave these episodes feeling the same way.
You are right when you describe IVF as an intense process. It's physically intense, it's emotionally intense., and depending on what type of insurance coverage that you have, it is also financially intense for a lot of folks. It is really important to remember that people who are going through these fertility treatments, they're not going through them in a vacuum. This is not the only thing happening in their life, you know, they may be dealing with the grief of infertility or other things in their lives, with their jobs, with their families. And IVF in itself, I feel like could be a full-time job, just managing all of the testing us to do, all of the appointments all of the medication. It's incredible that anyone can do it, if they're not, they don't have to be a nurse or a doctor themselves. I mean, I am in complete awe of our patients is incredible. And you had a particularly just rough time with what you were going through with Luke and I can't, I can't imagine the strength that it took. So I just my hat's off to you for keeping it together. Or probably, or maybe it's sometimes not, but keeping moving forward at least.
I do want to start off by saying, you know, the decision to do Pre-Implantation Genetic Testing, or I'll call it PGT moving forward just to save, save some syllable is intensely personal. So I think like any choice related to family building related to reproduction, this is not a choice that anybody should be making, except for the couple themselves. And so my role as a genetic counselor is really to educate and support our patients, never to make a choice like this for them. You know, my goal is to help our patients walk through that decision-making process, give them the information that they need, and the answers to their questions that they're coming in with, and to help them weigh the values that they have to hopefully come to the decision that they're going to be most comfortable with. You know, it's so important to have a clinic that makes you feel heard and supported because there are often a lot of ups and downs, this process. And so it's really important to feel like you have a strong team behind you.
Sometimes babies come home from the hospital requiring extra therapy support in the home. And for some kids, it's determined a little bit later that this extra therapy support is needed. Where I'm from this kind of support is known as Early Intervention. For Kristyn, it's called first steps. There's probably a similar program in your state with a different name. These therapists, enter our lives as strangers who are meeting us at a very emotionally vulnerable time in our lives. In my personal experience, the same people who were once strangers become our mentors. They're the ones who teach us valuable techniques, tips, and tricks on how to help our children reach inch-stones, or milestones, through play and exercise. In this episode, we meet Jen who shares with us about her life and her calling to the field of Pediatric Physical Therapy.
My sister, my sister that's just two years younger than me, she was hit by a car when she was 13 and I was 15. And she had a lot of physical therapy. So it was kind of like this introduction to something I had never really known or knew much about. So I went with her a lot, got to watch, got to see what she was doing and got to see her progression, and just, you know, all the different things and all the many - it ended up being multiple times in many years. So it was kind of like I got to see a lot through that. And I just really enjoyed it. Like I just thought it was really interesting. So I knew I wanted to do physical therapy, like, and I always thought I wanted to do pediatrics too. I mean, I always loved kids. I always loved babysitting. I mean I still like me all little kids I love but like just even my nieces and nephews, I just love to be around them and I always knew I wanted to do pediatrics.
Life has a way of deviating from the plans you made, or the way you imagined it would be. And sometimes that deviation is subtle. But other times, it requires an entire reconstruction of life as you know it. And when you're facing the ladder, it is an absolute blessing to have good friends in your corner. Good friends are the kind of people who would stand on the side of the road, putting out traffic cones and flares, protecting you from the world that does not stop moving while you take the time you and your family need to navigate this new norm. In this episode, we get to hear from two such friends, friends who have supported the Newbern’s from the beginning and on as they all navigate raising compassionate, inclusive-minded children together.
I just I want to take this time first to acknowledge that you both have been so thoughtful in your considerations for Luke. But I was wondering, has Luke's diagnosis impacted your individual approaches to parenting?
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 say thank you, you know, you're welcome. So I think we're in the early learning stages. I just want them to be respectful, and I want him to be helpful, and I want him to be kind. So 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 even, you know, Luke, yes, but all the different age groups, right? So everybody's going to be at different points. And it's, you know, we're not going to single a Luke out for anything.
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, you know, 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 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 that we're raising Julian 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, even and, and how Julian is going to be meeting new children outside of our circle of friends, or just instilling in him that you don't know what someone might be struggling with, even if it's not visible. There's a lot more tough person than what you might see. Just still living with respect and kindness in all in all ways.
In this final clip, we have the special privilege of hearing from Luke's grandmother, Kristen's mother, Dr. Donna Cartwright. In this episode, she shares with us the perspective of a grandparent who is witnessing both their daughter, son-in-law, and new grandchild; as they navigate a bumpy road at the beginning of his life. The intimate conversation shared between these two provides us with some serious mother-daughter goals. Oh my goodness. I promise you will not leave this episode with a dry eye.
My mom had a lot of values that she instilled in me. A lot of lessons that, she taught she is a natural teacher. You know, the consequence of that is having a lot of lessons to learn as a child and as an continue to learn as an adult. One thing that my mom has always done is she has always taught through example. She never cuts corners. She doesn't excuse her own behavior while demanding different of me. She always buckles her seatbelt before she shifts the car out of park. She always writes her thank you notes. She always, always gives more than is expected. Now that I'm an adult, and I see other adults, and how they teach, or how they decide to instill values, I realized how rare and how special it is, for a teacher to truly live by her lessons.
So because she taught me through her actions, the most ingrained lessons that I picked up were ones that she never spoke, but that she showed me. And the one that I would, I think applies most to what motherhood has required of me is grace. Specifically grace under pressure. So, if you throw my mom, a volatile, traumatic, scary situation, she is focused, she is calm, she's level-headed. As a teenager, this drove me nuts. But now, as an adult, as a mom who has experienced intense uncertainty, and trauma, who has been in life or death situations, that change by the second, I am able to show that focus and that grace under pressure. In fact, I'll even tell the short story of Luke as a young child who has faced more firsthand trauma than I could ever imagine. Now, he's still a child, he might throw a fit or cry if he has to take medicine or put his shoes on or something like that, what do you might expect from a kid. But when he was faced with fighting the ventilator after his last heart surgery, which those of us in the medical community know how scary and traumatic and painful that can be, to experience and to watch. When he was battling and struggling to fight the breathing tube to find his own breath. I saw him stop for a moment, grabbed my hand and study himself. All on his own. He had a single tear rolled down his cheek, a look of determination, and he found the strength and cadence to breathe on his own. And in that moment, he showed grace under pressure. And I think my mom gave that to him, through me.
All I can say, Kristyn, if I have exhibited that you have doubled it. Any, any positive thing you have doubled. You truly have. You are a wonderful inspiration to your dad and me. Yeah. I'm, I'm just so thankful. And as I said earlier, we are so blessed that you and Kevin or Luke's parents because you have, you have given him a wonderful path. Life will be good for him. He will be able to build on his strengths. And he has many. He has many.
I am still holding my heart after that interview, and it's been almost a month. In producing Season Two, I've listened to each of these episodes several times over and I just have to say that I still get goosebumps.
As with Season One, we will also be releasing Afterthoughts episodes following the guest interviews. And just like Season One, these Afterthoughts episodes will vary in style. Some will include Kristyn and myself sharing our reactions in the impact of a conversation that was had. Others will include a return visit from a guest. There will also be some solo episodes from Kristyn herself.
There are so many fun surprises happening in this season. It's really just hard not to spoil all the fun by sharing the details. So just now that with each new episode, you are in for a very special treat. So stay tuned next week for the official launch of season two. If you love the artwork for Season Two, head on over to our online shop. There are so many options to pick from, but my personal favorites are the tribal and T-shirts. If you love what you hear, and you want to support this podcast, you're welcome to donate. Every little bit helps to support this podcast, and anything more is donated right back to our community.
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.
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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.