TRUSTING OTHERS AND HELPING HIM TO WRITE HIS OWN STORY
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
In this episode, we get to hear about who Luke is today and how Kristyn is navigating parenthood, in a world that isn't always as inclusive as it should be. Kristyn shares about her concerns that come with parenting a child whose medical condition isn't very visible, along with both the internal and external challenges that come with deciding on how to voice those concerns. We discuss the fears that come with relinquishing the care of our children in the trust and new professionals who enter their lives. And I share a bit about how we as parents are modeling for our children how to interact with society, which then influences how they choose to introduce themselves, to their peers and the rest of the world. And just like in previous episodes, once again, we have the pleasure of being able to hear from Luke as well.
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Hey Luke, how long do you think it would take to fly to the moon?
I, I don't know. A long time.
A long time. How many stars are in the sky?
Soooo many! Like thousands of stars! (giggling)
Welcome to Season Two of Atypical Truth. I'm your host, Erica Jolene. Humans are storytelling beings. I created this podcast to amplify the stories of people in my community, the community of people with rare diseases, disabilities, and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear the stories from family, friends, and professionals who advocate with us. In the previous episode, we heard Kristyn's moving account of what it was like to learn about Luke's very serious and life-threatening congenital heart diagnoses. She also shared with us the story about how this entire experience of not only becoming a first-time mom, but also a caregiver to a child with a rare diagnosis, how this transformed her and their entire family.
And I have to say, as I listened to that episode, I just couldn't help but to think about how crazy it is that such a powerful transformation comes with the simple three-worded titles, MOM and DAD. For those of us who experience this kind of emotionally turbulent entry into parenthood, for those of us who pick up honorary titles along the way, such as nurse, therapist, doctor, pharmacist; we tend to wear the titles of MOM and DAD as a huge badge of honor. So in this episode, we get to learn more about being just that Luke's mom, and we get to hear about who Luke is today and how Kristyn is navigating parenthood, in a world that isn't always as inclusive as it should be. Kristyn shares about her concerns that come with parenting a child whose medical condition isn't very visible, along with both the internal and external challenges that come with deciding on how to voice those concerns. We discuss the fears that come with relinquishing the care of our children in the trust and new professionals who enter their lives. And I share a bit about how we as parents are modeling for our children how to interact with society, which then influences how they choose to introduce themselves, to their peers and the rest of the world. And just like in previous episodes, once again, we have the pleasure of being able to hear from Luke as well.
So it's interesting, as you don't kind of reviewing this arc of time. From that, like those early days of not knowing up from down and not really even knowing we were in the thick of it, and not really understanding the just the stakes that we were even up against. And then you know, kind of moving through and up until now. And I mean, here we are talking as if we're like - woooosh- we made it work through all that right. And I mean, everything is such a function of time and the present in this world and in this, you know, medically complex world where if you asked me two years from now, I might have an entirely different answer for you. Or two weeks from now I might have an entirely different answer for you. You know, so I, I really just want to point out the emotional strain and sometimes the frustration of, and sometimes the celebration of, the lack of permanence in this world, on this journey. That now for Luke, he is the most stable medically that he's ever been. He has no physical restrictions. We are on no prescription medications. He gets to go to school, which is huge and a really big new step in our lives right now. He is in person with other students his age, and with a teacher and he is, you know, still having multiple therapies a week still checking in with his different specialists at regular intervals. But at this time, we are in a really good place medically. So life usually looks like chaos in the morning of getting ready, drop off for school, and pick up from school, and talking about our days, and trying to get through dinner with a picky toddler who enjoys chicken nuggets. And you know, let's see, what was the latest one? Oh, yes, Pizza Lunchables is another favorite for him. And then playing games and getting ready for bed. So really, I mean, life is really great right now, for Luke. And we're in a spot where we really get to appreciate that stability.
He's got some really refined tastes, doesn't he? (laughter)
Oh, yes, he's very particular about the number of pepperonis that are required on each pizza, the number of seconds in the microwave that it needs to be not too warm or not too cold. So he's got a whole recipe plans.
I love it, the autonomy in that, it must be very liberating.
We have seen our children endure the unimaginable, and continue to thrive despite the odds that are stacked against them. We have notebooks filled with pages and pages of documents to attest to the obstacles that they have had to overcome. And with impressive accuracy, we can recount important details from any point in their medical journey. In many ways, we have come to know and care for our kids better than we do for ourselves. In addition to providing the life-sustaining care that our little medically fragile babies require, as their parental caregivers, we're also responsible for maintaining the relationships with the professionals who enter their lives. I think that instinctively, we want to make a good impression to ensure that each person looks forward to helping our children and provides them with every opportunity to grow and thrive. So we try our best as their parents to introduce them to the world in a simple but nicely packaged way. This process starts intimately with family and close friends. And we soon learn that multiple versions of introductions are required. And as our children continue to grow, we build this arsenal of responses to use in any given situation. You have this simple explanation that you've constructed for those who are outside of the medical world. You have the detailed medical version for the professionals who enter their lives and need to know their detailed history. You have the fragile explanation to ensure that they receive the support that they deserve. You also have the relatable and fun interpretation for their peers who want to get to know them. And you also have the inspiring story for those who cannot see the child beyond their limitations or their disability. And as parents, we begin to learn how to weave together the medical terminology that we have picked up with the basic language we used before, so that people who have never met our children, they leave with a synopsis of understanding. And really, you hope to God, that is enough. But you know, deep down that it only ever just scratches the surface.
While this is so very necessary for their survival throughout the first few years of their life, and in some cases forever, it is hard to balance those relationships, knowing that at the end of the day, you are their parents, and for the professionals - it is their job. It is their professional career that they do, or have done for years, not just with your kid, but with many, many others. So yes, it is so very hard to relinquish the care of our children and our trust to new people who enter their lives. It's hard to trust that teachers, therapists, new specialists, and nurses will ever fully comprehend what your child has been through what they've had to overcome to get to the point when these new people get to meet them. And you want I hope that every person who needs your child will advocate for them just as fiercely as you do, and will love them just as compassionately as you do. Because when you look at your child, you simply think, how could you not?
With Luke now being in school and participating with his peers in this inclusive setting, what does it feel like for you to relinquish the care and the control to people who don't have that same history and knowledge that you do of Luke?
So I wish for everyone out there who is either experiencing this or who is overthinking the future for when they will experience this, I wish I could give you this peace and clarity of saying, you know, "I's great, and everyone just rises to the occasion. And there will be, there will be no struggle or nor no anxiety!" And unfortunately, that's just not true. Luke has only been in school for a short period of time, in person with peers in this inclusive, but I would say probably for the most part, typically developing peers without physical disabilities. He's only been in that environment for a very short time. And even in that short time, I find myself wanting to check in more than I'm sure other parents or other caregivers are checking in, or wanting to question every photo that I see where Luke is maybe on the outside of the group that's running, you know, in the field, during recess, or maybe, you know, I see that he's maybe not participating in a group activity. But am I just perceiving that or is that you know, just the placement of where the kids are in the picture? So I, I find myself actively trying to not overthink, trying to be open, I have the privilege of Luke being able to communicate with me, even on a four-year-old level. So sometimes it's a little, you know, ambiguous, but he can communicate. And so I try to just ask questions about how things are going, and kind of feed off and listen to him openly. And then I do talk to his teacher into his therapist, pretty consistently, and probably a lot more beforehand than maybe the other parents. But I would imagine that what I feel during this time is a lot like what other parents feel, but maybe just to a grander scale because I realize the difference is that Luke, and perhaps the people around him in this school, maybe haven't realized yet.
In our private conversations, you've talked about your concerns about how the world does perceive him because many of his disabilities are not visible. That there's a part of you that worries that people aren't able to see what he has overcome, see him for his strengths, but also see him where his weaknesses are, and work with those. How do you find yourself navigating that in his social settings, but also in the school settings?
There's a lot of considerations that I don't think I ever would have realized, being the parent of a kid who has medical complexities like this. A lot of times, I struggle with introducing new people into Luke's life because of his diagnosis, his medical history, and his physical disabilities. And I think one thing that makes it a little bit more challenging for me is the fact that I'm explaining something that I know, or I'm fairly certain, the person on the other side of the table has never heard of before. And communicating that not only do I need to communicate details that are completely new information to this person, but I also need to validate myself. I have to make sure they understand that what I'm saying is accurate and that it should be taken seriously. And I think that might be unique to those of us with kids who have a rare or newly discovered diagnosis. Because all of this information is brand new to that person, even if they have the best of intentions, the most open minds, all of this information is brand new to them. I've had almost five years to sit and absorb and learn and watch and experience, everything that Luke goes through and all the support that he may need. But these people, anyone that I'm introducing into his life, be it a therapist or a specialist, or fellow students and their family, I'm asking them to absorb a lot of information very quickly, believe it, and recognize the importance of their interactions based on that information. So I think that is a point of, or that's a struggle for me, and then, therefore, a point of anxiety as I anticipate introducing new people into this life. So especially, I guess, being that is not immediately visible on him as well. That also kind of introduces a bit of a challenge of credibility as the mom. Even though Luke's challenges and his medical history aren't immediately visible, when he is in a setting with his peers and you watch the physical interactions, you know, physical play, I would say that it's easier to understand the explanation that I give beforehand to help those caregivers help those teachers, best support Luke. So that's something that I try to include in that explanation, or things that would be helpful for them to watch out for, like, elevation changes on a playground or times where he has to support his own weight with his hands and things like that. Right? So I think that's really the biggest challenge for me, from the point that his challenges are either rare or newly discovered. And then the fact that they're not as immediately visible as some of our other kiddos.
There are real safety concerns, right?
And that's where your heart is. That's where your mind is. You've worked this hard. And Luke has worked so hard. What he has survived, you don't take in vain. You know?
It's so interesting to hear you talk about that because I struggled with that - I still struggle with that. As a parent, I struggle with how do I introduce my kids, as my kids not as their diagnosis? Even though people are going to notice that they're disabled...
...and their question about my kids' disability is something that I anticipate. And I'm constantly reformatting and reformulating - how am I going to explain this in the most simple terms possible?
While not losing the important components that are necessary in their understanding of, really, again, the safety concerns, right?
Yes. I struggle with that all the time, and especially now with thinking about his education, like his school life, where you do want to balance it, because Luke is so much more than his diagnosis. He is the coolest kid ever. And he has all these awesome hobbies, and he is so hilarious, and he has the best dance moves. And he is just, you know, he's, he's a rockstar. And I'm not biased in that category. Like I I objectively evaluate him as...
Sure you do...(laughter)
...the coolest. Yeah. (laughter) But, but I, I kind of regret that so often, if I am having these initial conversations with people who are in charge of his safety, I don't even get to those parts.
Yeah. Yeah, I think a lot of parents are gonna resonate with that, Kristyn, I really do
Yeah. And it is it's so tough. And then, you know, always like, again, with the overthinking of you know, did I don't want them to be so careful that they don't include him in activities and that they just bypass him for certain, you know, events or something and, you know, out of this abundance of caution, and yet, he should, we should push him to his full potential and we should make sure that he has every opportunity, you know, to try new things and to find new hobbies and interests just like any other kid. And so, you know, kind of trying to walk that line. And again, I feel for these people on the receiving end of these conversations because imagine the pre-Luke Kristyn, trying to hear and absorb all that information. And like, "What in the world am I going to do about this?" So it is it's a struggle all around. I will say, if there's any piece that might bring comfort to, as someone listening to this, and you know, now being given all this added anxiety to consider...I will say that, so many, and perhaps because well, first of all, because Luke is the coolest like we said before, but also because of these, these extra pieces that he has, I will say that the teachers who have responded, the therapist who has responded and really truly seen Luke for the kid that he is, and worked with him with the challenges that he faces, those relationships have been so bonding, and so close for our family, that I don't think a lot of parents of typically developing kids really get to experience. So perhaps there's that potential for that really incredible closeness and trust, that that might not be there. Otherwise,
You're right. And you know, Luke is watching you he's absorbing this. He is learning from you how to introduce himself to the world too.
In being both very proud of his battle scars, but also cognizant of his limitations, and trying to figure out how at 4, 5, 6, 7, 8 - as he ages, how to communicate those to his peers.
As if we as parental caregivers need any more responsibilities, it is important to know that our children are watching us, they are listening to us, they are absorbing the information we share, especially when it is about them. In doing so, they're learning from us how to communicate for themselves, and learning how to compose their own story for various social situations in which they may find themselves in. I think it's important to know that even in families like my own, with children who do not communicate with words, it's important to know and be mindful of the fact that they too are watching and listening to us, as we share about them and who they are. It can be easy to forget that when a relationship lacks verbal communication, but it is so very important for us to not forget this.
Having been a child who grew up in the medical world for many years without verbal communication, resulted in many adults rarely filtering themselves when around me. My medical history, the possibilities, and the limitations were discussed openly and frankly. And I'm not saying this as wrong. But I will say that medical terminology, it became a foundational part of my early language development. I very quickly had the ability to explain my condition to complete strangers, as though I was reading straight from a textbook. And this explanation, it was one that I borrowed from my mother. And it was one that she had worked and reworked as my caregiver and advocate.
In borrowing her words, I learned that while adults and medical professionals were very impressed by my ability to articulate my own medical history, this same explanation did not fly with kids my own age. Nope. I learned through many failed attempts. Then this adult explanation left my peers very confused, if not just completely uninterested in the medical details that really must have sounded like a foreign language to them. So as I grew up, my story about my trach, my disabilities, my scars - it evolved into one that was admittedly very embellished and far from the truth. So yes, I told elaborate tales to the gawking kids at the skating rink and the bullies at the swimming pool. And you know what? I had had them all sitting at the edge of their seats, as I dramatically detailed, a riveting, but completely fabricated story about how I acquired my trach and all of my scars. I did this out of survival, social survival. I knew from personal experience, that the medical story, would result in crickets and confusion. You see throughout my life, and specifically, my childhood, disabilities, especially disabilities like mine, have not been portrayed in mainstream media. Without that representation, these kids had no idea of what a childhood like mine consisted of, nor did they have any concept of the terminology used. And I knew, even at a young age, that the real story about my disabilities would set me apart in a way that, I don't know, didn't carry as much clout as the idea of me surviving something very dramatic, that my peers had maybe seen or heard about on TV or in the movies. Through hearing my mother communicate about me, and by creating my own elaborate stories, I was learning more about myself and how to identify who I was in this world. Growing up and maturing in general, I grew up proud of my scars, my disabilities, and what I had been through, and I no longer felt the need to embellish my story, or really even share it if I didn't feel like it. All these steps, including the words I had borrowed from my mother, they were critical in helping me to learn how to communicate my origin story. Just as the work Kristyn is doing is hoping Luke to develop and communicate his own origin story as well.
I totally see parallels between kid-Erica and kid-Luke. So if I get a phone call from whatever the equivalent of Roller Skating Rink, is, in eight years, and Luke is telling wild tales about what his pacemaker actually is, and Ummm, and I have to come and help explain the situation, I will think back to this conversation. I will smile and be very proud of his imagination, and then figure out how in the world to help him write those stories accurately.
I do anticipate some sort of engineering gearing also maybe a spaceship ride to be involved in that story? Probably
Probably, Probably, Absolutely, he like he gives those vibes just in the same way. So I can see that something like that happening in his future.
It's so interesting, though, too, because like, I had to rewire what was happening to me in a way that worked for my brain and my peers. And I could see any kid doing the same thing.
But so eye-opening too, because I was a parent, and fully, you know, ugh Gosh, I don't know if I'd say I was fully mature. But you know, I was a full adult, when I had to start accommodating my story to my audience. And to hear your perspective, and consider what it's like, for a child who is coming of age who is hitting all these very normal, but very challenging social encounters. Like, not only is that challenging for every child there, but it's, there's this added layer that they have to navigate and they have to accommodate that story to their audience. And it doesn't necessarily have to be a, you know, an action thriller a plotline to be packaged in a way that is considering the audience responses or how they're able to handle that. And so wow, that's, that's something that we add to the list of burdens or have responsibilities on these kids that already have enough.
You know, it's, I don't think it's that different from what may be typical kids experience, too. It's just maybe more complicated content? I do find it interesting that we as parents feel like we need to package their story into this box of fragility. And then you put that same box into the hands of your kid, and they are going to package it into action and thrill and like, just totally opposite most likely. And isn't that just a kid though? There's going to be a point where maybe, maybe us as parents and our kid's stories, our two versions are going to intertwine. And that's really going to be probably one of the best parts of this, is when we get to start telling their story from their terms.
It is. I can't wait. I mean, I can. I'm excited about the whole the whole journey of it. But it will be so neat to hear how Luke develops his story.
His non-packaged, authentic story.
Where do you think balloons go?
What's out there in outer space?
Planets, what planets do you know?
Well, Mercury. Saturn! Venus. Neptune. Pluto. and Juuuupiter. He's GIIIIIIIIANT!
Yeah. Can you name all the planets in order?
Oops, what about that first one?
Mercury, Venus, Earth - and its moon. And Juuuuupiter.
What's after Earth? The red rocky one.
Mars!!! And there's GIANT Jupiter.
And then what?
Wait, wait. You forgot the one with the riiiiings.
Saturn! Uranus. And the teeny tiny Pluto.
Which planet would you live on? If you could pick any of them?
Because I like Pluto.
Yeah. Is it little and cute?
Can you name one thing that you would like to do or provide for Luke if you had no limitations of money, destination, accommodation? What would that be?
Okay, I'm going to test your, your lack of conditions on this, on this question. So besides what might be the obvious answer of giving him a fully healthy heart, of discovering a treatment that cured his physical disability, or simply guaranteeing that he wouldn't have to face any new medical challenges in the future...Okay, so we're gonna take all of those, put them in a box, and say that that's our only restriction or limitation to this question. So all those aside - which I would take all of those pretty much at whatever cost. But all those aside, I would take Luke to space.
I should have known that would be your answer! (laughter)
(laughter) You might have guessed that!
Tell me more!
As, as our amazing season artwork demonstrates, Luke has always been fascinated with space. He even talks to the moon.
...and he has since he started talking, in his car seat on evening drives. Anytime he could see the moon he would point and say "Moon." This is one of his very first words. And ever since then it has evolved into conversations like, "Hey, Moon, what are you doing up there? Come on down. Why are you, why are you up but daytime?" ...or you know, things like that. And he loves to see it and he always asks about when can we look at the planets or, "When can we see the stars mom? I want to stay up late enough to see the stars." And honestly, he might not know more facts about the planets than I ever So, if If anyone deserves a space mission, it is my Luke.
I grant that. If I had the power to grant that I would in a heartbeat. I would be at the launch pad cheering both of you on because if I remember correctly, that is a dream of yours too. And I don't think you'd let it slide for him to go alone. Right?
Well, there's a reason why I chose to be the chaperone. So it's self-serving too
Oh, I love it! He talks to the moon. Ooooh...
I think he could do it, too. He's got that mental stamina to just, you know, he, he always wants to know, how the buttons work, how the gears work, how we put the machine together what's in the engine, so I think he would be a great commander on his mission to the moon.
I hope that happens. NASA. Are you listening? I love it.
Love it. Let's go to the moon.
If there was one thing you would want people to know most about your role as mom to Luke? What would it be?
Okay, so if you can't get this already, from my...(laughter)
blushing, you're absolutely glowing right now....
I just love this kid so much. So if you've listened to this conversation, and you cannot tell already, how much joy I take in being Luke's Mom, I don't know what's going to convince you. So I would say the one thing that I would want people to know about my role as a mother to loot is that being mom is is the best title I've ever, ever held. And I know people say that. But for me, it feels so powerful to say that because growing up, I honestly did not anticipate having children. It wasn't something that was assumed in my family or even really expected, let alone kind of required like a lot of families I feel like, So I was planning a lot more for my career than parenthood by any means growing up and through adolescence and into my early adulthood. Yet, after deciding that we wanted to have kids and be parents, through this journey, through all of the chaos and the quirks, and the triumphs and the struggles; being a mom to Luke and to Ozzy has brought me more happiness, more perspective, and more peace than I could ever have anticipated.
Kids man, I tell ya!
They do get you!
They do something to us!
I wouldn't be the least bit surprised if I one day hear about Luke Newbern, launching into space. And perhaps with that little brother Ozzy by his side as his co-pilot. Speaking of Luke becoming a big brother, next week, in our final one-on-one introductory episode with Kristyn, we will learn more about what life looks like for the Newberns now that they are a family of four. We get to hear more about the difficult decisions that were made when deciding to become a family of four, and how those decisions led to Luke becoming the incredible big brother that he is to the fearless little Ozzy. Kristyn also shares about what it is like to raise two children with vastly different newborn experiences. And how once again, this has shifted her entire perspective on parenting. And spoiler alert, we also have a guest appearance in this episode that I am sure will provide you with a good hearty chuckle. So stay tuned next week for the fourth and final one-on-one episode with Kristyn Newbern.
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