HONORING THOSE WHO HAVE MADE A PROFOUND DIFFERENCE IN OUR LIVES
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
A storied dedication to those special people in our lives who exist beyond the microphone, those who have shown up in more ways than we can count, the people we have yet to interview but whose conversations and connections mean the world to us.
If you have enjoyed this season and would like to share some words of gratitude and a story about the impact it has had on you, I encourage you to send us a recording. HERE you will find a link that will allow you record a short message. I would like to share these messages in the approaching season finale, so I ask that you please record your message before July 1st.
Where does cheeseburger go to dance?
The meatball! Get it?!?
(Laughing) The meatball!
That’s so funny.
You are a good joke-teller.
Welcome to Season Two of a typical 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 those stories or the power of connection, validation, and community are built, which is why 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 stories from friends, family, and professionals who advocate with us. We have spent this wonderful second season with Kristyn Newbern, who is a fellow medical mom and caregiver to her son Luke, who was born with a primary diagnosis of congenital heart defects. And it was later discovered that he had a rare genetic condition called Noonan Syndrome. It feels bittersweet to say that we are nearing the end of the second season. Kristyn has not only introduced us to her beautiful family and narrated life through the stories of their experiences. But she's also introduced us to so many wonderful people who make up their family’s tribe. The conversations that have taken place throughout this season have been so profound, so relatable, and also very informative. I am beyond grateful for the time that both Kristyn and her guests have spent with all of us. I remember when the first season, my season came to a wrap, I felt a great deal of remorse for the conversations that I didn't get to have with the guests, that I didn't have time to interview for the questions that I forgot to ask, and for the information that I had yet to share. And it was no surprise to me that Kristyn felt the same. And so today's episode is a story of dedication to those special people in our lives who exist beyond the microphone. Those who have shown up in more ways than we can count, the people who we have yet to interview but whose conversations and connections mean the world to us. And before I let Kristyn take it from here, I have one special audience request, which I've saved for the end of this episode. One that I hope you will consider if you've enjoyed spending the second season with the new birds.
Today's episode does not have an interview. Instead, I wanted to share with you about two of the impactful relationships in my family's world from my own perspective. See, when you become a parent, you realize how much you need support. And when you become a medically complex parent, you realize it tenfold. I want to share with you today about two of these incredible people in my children's world. If you're listening, chances are I just as easily could be telling a story about you. And if you are listening, but you aren't in my world specifically, maybe you have made a difference like this for someone else.
I believe healthy relationships with adults are so important for children. Being able to trust, learn from, and relate to people outside of your own direct parents. I remember as a kid, I was an only child, but how to close extended family with cousins, aunts, uncles and grandparents. Growing up I spent many weekends playing with kids, lessons learned from aunts and uncles. I remember sneaking upstairs at family get-togethers to hear the adults roaring with laughter at some story being told and thinking that I couldn't wait until I was old enough to be in on the fun. As an only child, I remember thinking about how if I had kids, they probably wouldn't be born into a big extended family, depending on who I married. I also remember my dad's reminders, as my relationships would get more serious, that you don't marry a person; you marry their entire family. In high school, I think I met him with an eye roll at best as a response. But now I'll confirm that the advice is sound. And fortunately, in my case, I'm very grateful that it is. I met my husband, Kevin's younger sister Mallory.
When I first started dating Kevin in college. It was summer, I was “the new girlfriend,” and I was totally intimidated by this girl. She was a couple of years younger than me, but she had this presence about her that was magnetic and competent. You just wanted to be around her. She knew the best punk rock bands went to all the concerts, had a ton of friends, and had the genuine respect of all of Kevin's friends. She grew up with an older brother and a bunch of older boy cousins; she knew how to hang out with the guys but was absolutely true to herself and her own beliefs. For that first summer, I remember I just tried to act as cool as possible before she'd surely find out that I was a complete loser fraud who knew more about calculus than how to keep lasting friendships.
But from the start, Mallory looped me right into her circle. I went to concerts with her and her friends, spent lazy afternoons laying out on lawn chairs in her parents' backyard. She told me about how much she liked baking and that maybe one day she could own her own bakery. It was a dream, but it was her dream. As the years passed, we grew extremely close. She pursued that dream of baking and worked for a well-known restaurant here in town while planning for her own company. And sure enough, after being the maid of honor at my wedding to her brother, she started her own bakery and specialized in French macarons.
She was and is the sister I always wanted when I was pregnant with Luke and found out about the first steps of what his medical journey would be, Mallory was worried and uncertain but always supportive. She was continually there for me, and didn't tiptoe around any issues, or try to avoid it. She asked questions about Luke’s surgeries and questions about his nursery. She helped me plan for both and everything else in between. Malory and her boyfriend Clayton got engaged just before I gave birth to Luke, and Mallory asked me to be her maid of honor. I was thrilled, of course, but also kind of nervous knowing the uncertainty that Luke's early life would hold. Their engagement was nearly two years long, and part of me wonders if knowing Luke's pending heart surgeries impacted the planning of their own timeline for marriage.
In Luke's first year, as we navigated surgeries, a newborn and baby and heart failure, and starting to discover his genetic condition, Mallory and Clayton were consistent, loving, and supportive. As we were just starting Luke in physical and occupational therapy, Mallory and Clayton asked Luke to be the ring bearer. Under normal conditions, this would have been a greatly received gesture. But in all honesty, I was nervous about the responsibility. Calculating and out, I realized Luke would be 20 months old at their wedding, and I had no idea if he would even be able to walk by that point. When I voiced this concern, Mallory didn't miss a beat to say, of course, it didn't matter how he'd come down the aisle. Walking in a wagon, being carried by a grandparent, horse and chariot - we would find a way. The important part was that he was there because he was her nephew. She put me at ease, and I internally set a goal for him to be able to walk. When the big day came, Luke had just a couple weeks of taking his own steps under his belt for everything Luke had been through up to that poin t- multiple surgeries, gross and fine motor delays, uncertain genetic prognosis ahead.
That day, he was Mallory and Clayton's - and arguably the world's most adorable ring bearer. He wore a suit, suspenders, and a bow tie. He held his parents' hands and slowly, proudly, happily walked down the aisle to support his aunt and uncle. I can close my eyes and be right back in that moment, fighting back tears, remembering being overwhelmingly proud of my son and being so very grateful for my sister and brother-in-law. Since then, Mallory became an aunt again to Ozzie, and shortly after, a mother herself. She's told me on multiple occasions how her perspective has shifted since becoming a mom on both her own personal mindset, and her understanding of parenthood in this medically complex world. Her and Clayton's beautiful baby, Grant, is Ozzie’s best friend and Luke feels a special bond with his cousin already. My boyfriend's younger sister, who went to wild concerts and had big dreams of her own, became one of my best friends. The most perfect aunt and a role model forever for my sons.
I think everyone can relate to the teachers who expanded our minds and shaped our perspectives. Whether it's a formal school teacher, a coach, or counselor, there are leaders in our lives who make an impact that we will take with us forever. As a parent, now, I have a whole new appreciation for teachers and the responsibility that they bear. When your kids are born, you realize what full-time really means. You have around-the-clock responsibility, and that's for the healthiest of babies. For parents of babies with disabilities or medical complexities, there is a 24-hour multi-layered commitment: medications, therapies, appointments, schedules, treatments, surgeries, recoveries, research conversations, trials and errors. And, of course, that's an addition to actually caring for your baby. You spend every waking and what few sleeping moments you have worrying about getting your baby to the next moment in time, whether you're doing everything you possibly can for them. And then, at some point, you are supposed to bring this baby (this toddler or this child) into an entirely different facility and entrust their care to a group of strangers; led by someone who is not experienced with this round-the-clock roller coaster you've ridden with your child through their entire life.
I remember filling out the enrollment paperwork when Luke first started at daycare, and it felt like every field that I had to complete needed way more space to explain what was required for him. These tiny blank boxes for feedings schedule or the dreaded medical history. There's no way that I could fit everything that they needed to know, everything I had learned that was so important for Luke’s stability into this tiny blank box. And yet, there were teachers who accepted this responsibility, who embraced Luke and our family.
Now, I'm not trying to convince you that every daycare teacher in our experience has had an extraordinary connection with Luke, but I have been amazed at the ones who have. Whether it was his infant daycare classroom lead teacher who had this magic touch of being the only arms that Luke would trust enough to fall asleep in. Or an assistant teacher in his toddler classroom who worked with him over and over on tummy time and transitioning between positions. His two-year-old classroom teacher Miss Amber had such a special connection with Luke that it would make or break his drop-off that day by whether she had arrived. Most of the kids would run and play in the classroom with various toys, running around making their own games and whatnot. Luke wanted more than anything to help Miss Amber load breakfast from the kitchen and deliver it to the classroom. And Miss Amber, who talked to Luke like an adult and gave him real responsibilities like pushing the food cart or opening the door, would happily comply. I knew that if Miss Amber was there, Luke would feel comfortable with me leaving to start his school day.
Luke had his most recent two heart surgeries in early March of 2020. And by the time he was home to recover, the world had shut down. Nobody knew what to expect from this pandemic. But many families in the medically fragile world knew it would mean a longer-term impact for our kids than most. Luke was home from school for nearly a year and a half. And that was actually a luxury of an option for us because we have willing able, incredible, in-town grandparents who could care for him during the weekdays. We ordered a home preschool curriculum, grandmas turned into primary teachers, I became curriculum coordinator and we all did what we had to do to keep Luke safe. And all of this while balancing the typical nap, feeding, and playtime schedule for baby Ozzie.
In August of 2021, Luke was able to start pre-K back in a formal classroom setting. I was nervous for so many reasons to enroll Luke in this new school. But he was four and a half. He needed social interaction and academic education - and his growing medical stability outweighed the reasons to hold him back any longer. I do remember requesting a meeting with his classroom teacher prior to the school year. A zoom screen was the first time that we met Mr. Dillon, Luke's pre-K teacher. Mr. Dillon talked about the daily schedule and all the awesome things his students would learn in the coming year. He was wonderful, attentive, open-minded, compassionate, and kind. And yet, I wondered how I could ever convey just how much was at stake for Luke, how much he had been through and how extreme the consequences of any incident could be for him.
My stomach twisted with the instinct to explain Luke's entire medical history conflicted with how much I just wanted to talk about how incredible my kid is. I stumbled my way through some high-level medical summary restrictions and red flags to watch for. I explained that PT and OT would be coming into the classroom every week and that we'd often be pulling Luke out of the classroom for appointments and outpatient physical therapy. Mr. Dillon listened, asked questions, and smiled wide. When Luke popped onto the camera. They instantly started talking to each other. Luke shared his favorite color brown, and Mr. Dillon said he was so excited to have him in class. When I dropped off Luke for the first time, Mr. Dillon came out to walk him in smiling under their masks. I have a picture of them standing in front of the school on Luke's first day that I will keep forever. After
talking to the front desk though. My heart sank. As I heard that the students in Luke's class had all attended school together since they were babies. I have been so consumed with medical concerns with Luke's physical safety that I didn't even consider the social dynamic he was entering added another layer of worry to the bucket. But throughout the year, Mr. Dhillon sent pictures of the kids and links class playing together. We heard from him regularly about class projects or activities. And he always gave a thorough report for parent-teacher conferences. We started to come home telling jokes, reenacting skits and scenes, and telling funny stories. He'd say, J K at the end and crack up. He started giving us math problems to solve at the dinner table saying, Okay mom, here's a really tricky one. He would tell us about months in the year and how living things grow. When we asked him where he learned these lessons, he'd simply say, Mr. Dillon, of course. But what has impacted Luke and us the most about Mr. Dillon is not how focused he was on the academic curriculum.
Now, what Mr. Dillon teaches in his pre-K class is a skill set more valuable than math or science. These kids will carry these lessons with them forever. It's compassion. Kindness inclusivity. Let me explain with a story. The week before Easter, Luke was excited for his school's playground Egg Hunt scheduled for that Wednesday. But because of bad weather, it had to be rescheduled for the following day. And Thursday mornings, Luke had outpatient physical therapy. So Wednesday night, we talked about how he might miss the hunt with this class, but he was still hopeful and brought his basket. As I walked to drop him off at school after physical therapy, I saw that the pre-K playground didn't have any eggs and realize they had already had the hunt. I went back to my car with a twinge of disappointment but reminded myself how lucky we were. Having to miss out on certain things just comes with the territory in the medically complex world -that every once in a while, he has to miss something that he's really excited about. I do get momentarily sad. He will be fine. And we would do a family egg hunt that weekend. No big deal. I answered a couple of emails on my phone before pulling out of the parking spot to drive to work. When I heard cheering coming from the pre-K playground. I turned to drive past the playground on my way out and saw Luke's entire class of four and five-year-olds gathered around cheering, “Go, Luke! Get those eggs!” AndLuke is running around victoriously collecting eggs and holding each one triumphantly with the biggest smile. They had stopped what they were doing in the classroom and created an entire second egg hunt for Luke cheering him on all the way. The whole class was jumping up and down, and then everyone started running and playing together. Mr. Dillon, who was leading the cheers, turned to see me in the parking lot and waved with a smile and a nod. I don't know if he realizd what a gesture like that means. It was probably a five or 10-minute detour from the regular schedule of the class, but seeing Luke's face, watching the kids cheer, I can tell you right now, that's a moment I'll always remember. And I bet I'm not the only one. I'm so grateful for Mr. Dillon. And I'm so excited for Ozzie to be in his class soon.
Teachers hold incredible purpose and responsibility for our children. As parents, you just want your kids' teachers to love them as much as you do, to see how strikingly brilliant and spectacular they are, to challenge them out of their comfort zone, but also make them feel safe, physically, emotionally, sociall, to inspire curiosity and yet engage their strengths, to innovate, empower and encourage them to be the very best versions of themselves. Also, multiply that by every single student in every single class that they have. No small task, perhaps no greater triumph. So thank you, to the many impactful people in my family's life, from the moments of interaction to the lifelong relationships, all parents need support. And parents in this world need a support system on a personal, social, emotional and professional level. They are safety nets ti trust, the security and stability that we do not have in our kids medical lives. And for the kids who are in your life, know they are watching. They are listening, and they are counting on you. You can give them confidence. Show them patience. Teach them compassion with the words that you say and the actions that you show. Imagine if every child had the benefit of adults like this in their lives. We just might be able to build an entirely better future.
And now, for my special audience request, I would like to put together something special for our guest host Kristyn. It has brought me a great deal of joy to hear from many of you about the impact that this podcast has made on your life. And I would like to forward that gift to Kristyn in honor of all the time that she has spent with me for this very special second season. If you've enjoyed this season, I would like to share some words of gratitude, and a story about the impact it has had on you. I encourage you to send us a voicemail. If you head over to our website, which is linked in the show notes, you will find a link that will allow you to record a short message. I would like to share these messages in the approaching season finale. So I ask that you record your message before July 1.
And thank you all for your support. for sharing this podcast and the kind messages and reviews you've left. We appreciate knowing that this labor of love is cherished by you, as much as it's cherished by us.
The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collectiveAmiina. The cover art for Atypical Truth was designed byEric McJilton.