BROTHERS DANCING TO THE BEAT OF THEIR OWN DRUM
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
Growing a family does not look the same for everyone. In the fourth and final personal episode with Kristyn Newbern, she shares about the difficult decisions, obstacles, and challenges they faced in their pursuit to grow into a family of four. Kristyn details the stark and perhaps even painful acknowledgment of the differences between newborn-Luke and newborn-Ozzie. We discuss how eye-opening it is as parents to see our children developing with two distinctly different personalities. Kristyn opens up about learning to trust that Ozzie is healthy and she shares the differences in her worries for them both. Finally, Kristyn leaves us with some really powerful advice for any parent who is facing a complex medical journey.
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Are you ready? Here we go. (Ozzie bursts with belly laughter)
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.
Those amazing bursts of giggles were brought to you by Ozzie Newbern. Not only did he make a special guest appearance on this episode, but so much of this episode is about him and all the excitement and new lessons that he has brought into the lives of the Newberns. My guest host for this season is Kristyn Newbern. Kristin 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. In today's episode, Kristyn touches on some of the decisions that are her and her husband Kevin had to navigate when deciding how to grow their family. And I just want to say from the top that this is not an episode where we go into a deep dive regarding IVF and Preimplantation Genetic Testing. That is something that will be discussed in more detail later in this season, as we have conversations with clinical professionals and professionals who have this lived experience. But I do ask that you please listen with an open mind and an open heart. I know there's a lot of varying opinions about reproductive choices. And I believe that these are private matters and personal decisions that everyone should be respectful of. Kristyn has chosen to be vulnerable and to share about their experience in hopes that it helps others who may face similar decisions, obstacles, and challenges in their pursuit to grow their family. She also chose to share about this in hopes that it does provide some perspective regarding the very difficult decisions that families navigate when they learn that they're carriers of a life-threatening genetic disease. So again, we only briefly touch on that in this episode.
Our main focus today is on the evolution that baby Ozzie has brought to each of the Newberns lives. Kristyn shares about the stark and perhaps even painful acknowledgment of the differences between newborn-Luke and newborn-Ozzie. We discuss how eye-opening it is as parents to see our children developing with two very different personalities. We also share just how naive and wrong we were to think that we had this parenting gig all figured out, until of course that second child came along to prove us completely wrong. I also get to ask Kristyn this question that I've often found myself wondering about, for families who go on to have children without medical conditions, which is: how and when do they ever trust that everything is okay? And as expected, it is not an easy, cut and dry answer. And finally, to wrap up this wonderful time that we have spent getting to know Kristyn, I get to ask her about her Atypical Truth. And she shares some really powerful advice not just for parents of children with congenital heart defects, but for any parent who is facing a complex medical journey.
We became a family of four, 18 months ago. But about a little over three years ago, we found out through Luke's genetic testing, that becoming a family of four might not be a possibility for us. And I know there are a lot of families who face that same difficult news, maybe in different for different circumstances, or because of different causes. And some for similar, where they are learning about their child's genetic condition being inherited recessive trait where both parents are the asymptomatic carriers, a very specific gene mutation. So we were just starting the journey in 2018, of learning what the path forward looks like, we knew that we wanted to be a family of four. But of course, not everyone gets everything that they planned on or anticipated in growing and creating their families. So we were dealing with some of these realities and I think really, every single step felt like well, this, this should be it right, we should be able to, to get there now. Or, or maybe even with a glass half empty approach. Not another step, not another test, we have to do not another appeal, we have to write, you know, or organization we need to bring into this, this journey that was so easy for us the first round, right? So with Luke we, we didn't incur any of the medical intervention that we did with Ozzy. And we are so fortunate in that, but it I think it made that experience, it gave us so much perspective, and so much empathy for so many of these families who are going through that. So we did, we went through this gigantic, long journey before as he was born. And then he was born. And I remember, I remember he was, you know, first handed to me in the delivery room. He was trying to eat my chin. And I have video footage because of some wonderful nurse in the delivery room, grabbing my phone and capturing this footage. You know, he was trying to eat my chin and I remember eating is such a big deal for our medically complex kiddos and feeding when they're newborns and infants and Luke not being able to eat by mouth for his first month and even then still struggling through really the next year trying to eat, trying to put on weight try not to have reflux, all of these issues that we dealt with and struggles that he had. And then here comes Ozzie just ready to go. And and you know I can't even explain, you know the difference that you feel as a parent, just this like flood of this variety of emotions, right? You feel relief, because you want it to be that easy for all of your kids, you want every step to be easy. And then this this kind of angst, or this remorse, or this grief, realizing just the wide difference in what that one milestone or that one step in Luke's life, what he had to endure and go through and overcome just to hit this.
So I would say that was kind of the first example, you know, minutes into Ozzie's life. That was the first example where I felt that kind of flood of emotions that I'm sure many parents of kids who are physically and medically healthy and kids with medical complexities have. I will say, that is a very common question that I am asked is, "What is it like to have Ozzie to have a healthy baby and, you know, compared to having Luke who had so many medical challenges?" And I've had, so I've had a lot of reflection time on this. And I will say that physically, it is exhausting to be a mom, to be a new mom. It doesn't matter what's going on with your kid medically. I mean, we were so fortunate. I don't think Ozzie had doctor visit other than his regularly scheduled ones. I don't know maybe not even to this day. You know, he's been in such good health. But he doesn't like to sleep. He never has. He doesn't like to miss out on anything, I suppose. Physically, it's exhausting to be a parent, doesn't matter if your kid is healthy or if there are medical complexities. But the emotional, the mental strain, the constant stress, and second guessing and moments of panic, and, you know, true, warranted moments of panic and these traumatic events. When you are the parent of a baby with these medical diagnoses, these complexities, there's just this constant dull roar in the back of your head, this pit in your stomach that I at least did not experience with Ozzie. You still worry about things, you still have anxiety about your kid, you still have the sleepless nights, you still struggle with some feeding or you struggle with other things. But for my experience, I think that was the biggest difference, just kind of in this high level objective view, was that that piece did not exist with Ozzie because he had his health.
I will also say that Ozzie has brought this tremendous personality to our family, this independence and this audacity to push the limits, to not even recognize the limits! There are so many things that Ozzie has introduced into our family, that I am, I am just done, I am grateful, I am impressed, I am consistently challenged by. So whether it is trying to push his entire body through the gates at the top of our stairs, whether it is not even not worrying about or recognizing the distance between the top of the bed and the bottom of the floor, you know, when he's testing out just how fast he can crawl or run. So many hilarious and amazing things that he has brought into our family that I think has, it's made Luke, a very, a very vigilant and watchful older brother. And I think it fits, their personalities fit together so well. They are entirely different, but they fit together in such a beautiful way that I just truly, I am so happy that...I mean, obviously I'm happy that he's here. But I'm so grateful that it's him. And that we we did Ozzie in our lives and as part of our family, because he's just he's just the perfect piece to our puzzle.
I really appreciate the message that Kristyn provides here, which is that parenting is hard. Period. It's hard. Okay, can I get an Amen? Everyone, and I mean, everyone has their own version of hard. But I do feel that it is important to acknowledge that there are different versions of hard and each comes with varying degrees of short-term or long-term physical and mental distress. I especially love how Kristyn mentioned "the constant dull roar of worry" that many parents experience when they have children who've been diagnosed with a complex or chronic medical condition. And I think it's really helpful that she distinguished the very real difference of that, from the more typical worries that parents experience when raising a child who was born without any sort of medical conditions or complications. And also think that there's another important theme to take away from this. And that is the fact that every child is different, each born with their own unique personality. And that difference, it transcends all others and it also shapes our experiences as parents raising those children. In this next clip Kristyn and I share pretty vulnerable examples of just that.
I can't discern whether he did or didn't get the memo that he was entering a family who may have some anxiety issues.
(laughter) He, I don't know. Maybe?
Did he get the memo and "He's like, Okay, well, the best way to solve this problem is to just go full speeds, they just, they give up on worrying." You know?
It is so funny, because I think as you challenges Kevin more than he challenges me, because Kevin is very neat and organized. And he really likes order in like, his space and his things in a way that I respect, but it's not inherent to me. And Luke also shares that quality that Kevin does, and he enjoys his order, and his, you know, neatness in space. And Ozzy, he will rip open a drawer, he will empty entire toy boxes, and throw things just to see how far they can travel. And it's an it's not a destructive, it's an exploratory adventure for him. And he's happy, and he's laughing the whole time, which makes me happy. But I will , (laughter) I will say that Kevin, and he would agree to this, has has really had to learn a lot in the patience department when it comes to just the destruction that is our second child.
I tell you, I'll tell you a story that kind of puts me in my place a little bit here. When Luke was two, we went to a baby shower, and I've been to a million baby showers or a million events or parties with Luke, throughout his growing up, if you kind of bookend COVID, right? I remember, there were other party attendees there too, with young kids probably about Luke's age, or maybe even a little younger. And these moms spent the entire time chasing their little kiddos around and saying, "No, no or no hands or no touch," and pulling things out of their mouths and pulling things out of their hands and apologizing for messes and cleaning up spills. And I remember sitting there with kind of this total superiority complex, where I thought, I must be the world's best mom, because here's my child behaving perfectly at this baby shower was with all these adults, and he is just sweetly offering to help you know, the the mom to be open presents. And, and I remember that and it's one of those times of of just sheer ignorance, right? And I fully call myself out on having those feelings and then now realizing that that was just me, benefiting from the natural demeanor of my very responsible and calm and orderly first child and not anticipating the fact that that was not a result of my wildly superior parenting skills.
That was a not a reflection of you.
That is just one time that I am admitting to having those thoughts and feelings so I am sure I fully fully reaped what I've sown there.
You know what though? I feel the same thing about Margot, and I didn't realize for so long I thought Margot's personality - her calm demeanor, her just totally laid back, doesn't it really make a sound really never cried unless something was truly wrong. She laughs and she smiles, it comes in these spurts. But like overall, she's just really laid back. Not attention seeking. Just chill. I think there's no other word for it. She's just chill. In hindsight, I actually feel bad because I thought that was a part of her disabilities. I'm willing to admit it and doesn't make me feel great, but I thought she was so calm because maybe cognitively she wasn't able to do certain things. And then her brother came into our life. And I think I've seen my daughter eye roll now more than they ever have!
Cognitively, physically, all the things, they are practically a carbon copy of each other, with exception to their personalities. Margot is laid back because she is an angel set from above, whose personality has nothing to do with me or her disability. Caratacus, on the other hand, he came into this world, letting everyone know, that Caratacus has arrived, and that personality trait in him has never subsided. It's so interesting, it may just be that second child thing? Or the youngest?
I agree with you. I think so because I do... It's funny, because do I...(stumbles with excitement) Okay, so I'm going to ask you a question. Do you hold on to some of the, like, parents of "healthy kids," the like, conversations or topics that you can relate to them on? Do you hold on to those as closely as I do.
UmmHmm. And this is one of them, right?
That's one of them. And I so I love being able to talk about that with any parent. Because it is it's so true. It transcends, you know, parenting approaches, and it transcends ability and disability and diagnoses and everything like that, that like, these kids are their own people. And they, and they do they act accordingly. And despite your best, you know, efforts to be in control or anything like that. It is something that's so I think it's just so wonderful about just the natural progression of life and of families. And it's one of the topics that I I just love being able to talk about with pretty much any family.
I'm so glad we got to talk about it.
Earlier I mentioned how everyone experiences varying versions of hard. And just as they are varying versions of challenges and difficulties, there are also very diversions of comfort and support that come with each experience, both raising a child with special health care needs, and raising a child without this constant health care support. For parents of newborns who require medical intervention and support, our children are born into this world where a vast and knowledgeable care team is awaiting them. From day one, us parents, we have nurses, therapists, nutritionists, and doctors guiding and supporting us. And while I know this is going to be an unpopular opinion, because this style of parenting, it feels so very unconventional and unexpected. But it is important to acknowledge that there's a certain degree of comfort and support that we gain from having so many professionals involved in the well-being of our child, especially as a new mom, even if it does require a major readjustment of our own perspective. But here's the thing, I can't speak on the experience of raising kids who do not have complex medical conditions. So I did take this opportunity to ask Kristyn, about that and the mental adjustment that is required when parenting a child without the same degree of health care needs as the firstborn. And as I mentioned at the top of this episode, as one might expect, there's no cut and dry answer. It's more complicated than that.
How long did it take you to adjust or to trust that Ozzie was healthy?
I am so glad that you asked this question. Not only was pregnancy, just a different experience, and, entirely of course because of IVF and the genetic testing components, but at every month every ultrasound milestone, I was waiting, right. Waiting for the news, especially that 20 week anatomy, ultrasound. And you know, would kind of question every time that it came back and things were looking good and in a way that I think it was kind of not met with confusion, but met with kind of this patience. It was met with patience from the medical professionals that were giving me news and giving me reassurance and all that. When Ozzie he was born, so Ozzy was born during COVID. So we were, you know, in the room, he was in the room the entire time, everyone who came in, was fully geared up, and no visitors just Kevin and me. Which I would, frankly, I was totally fine with that. I'm I know, there are many different experiences from women who have given birth during the pandemic. But I remember any medical professional that came in, any nurse that came in any time that the hospital pediatrician came in any tests that were run, I wanted to know, every detail. I was asking every follow up question. And anytime there was anything off the typical chart or results or anything, I was ready for that to be, you know, the start of the story, right. And there were small things that would happen. I think the first day, Ozzie didn't pass his hearing test. And I thought, "Oh, here we are, you know, this has got to be it." And, you know, the, the medical team, I forget if it was a doctor or nurse that told me that. And I, you know, saw they saw my heart kind of sink, right? And they said, "Oh, it's not a big deal. Many kids, we'll just retest tomorrow." And I'm like, "Yeah, okay. I'm sure." And so then, you know, spiraling down a terrible web of Google searches, and, you know, becoming medical mom, that that sleepless night, and only to find out that Ozzie passed his hearing test the next day. So, you know, lots, there were every time there was an inconsistency, or an abnormal result, I was immediately ready for the worst case scenario, because we've had the worst case scenario.
I bet you were already learning ASL by day two, right? Like, you're like, "How am I going to learn how to sign now I need this needs to happen before he even opens his eyes the next morning."
Yes, it you are so entirely right. And there were there, there have been so many times where I think that inpatient hospital stays should like censor your ability to Google certain medical paths that you should not be going down any, anytime soon. So, so yes, I remember that specifically. And then anytime that I've, you know, in those first few weeks, especially, where there would be something off or whatever, I will admit that I have pulseox'd Ozzie. Which, to anyone who doesn't know, that is just the little like, heart beat monitor and oxygen level reader that you can get from Walgreens that just kind of sits on your thumb, and tells you what your numbers are, you know, just if he was breathing a little bit heavier, or seemed a little bit sweaty or something. So there have been, certainly been times where I have been a little bit too nervous with Ozzie, but I will say after those first few weeks of the shoe not dropping, I sort of started to started to trust it. Started to feel a little bit better about things and and really, since then have have not really had those instances, which I kind of feared that I would all the time. And I really have not. And I think it's just been the sheer difference in both of boys experiences throughout the first year and a half of their lives.
Do you find yourself getting as anxious when Ozzie becomes sick? If he even has had that experience in the short lifespan? I mean, we are living in the middle of a pandemic. So that doesn't help matters. But when you compare that anxiety to how you feel when you see any sort of symptoms of illness emerging in Luke, how does that compare?
Oh, it does compare. There is there is a definite difference. I will say that especially when Ozzie hits two, I think I will worry that much less about him getting sick. I don't know how you felt with your kids as they grew up, but I remember feeling like, "Okay, let's just let's just get loot to one. Let's just get Luke to this next age milestone or this next weight that will make him you know that much more viable, or let's just get through this medication that has all these risks if he catches something or..." I remember, I remember having, which, you know, this might not be the healthiest thing in the world. But I remember having these kind of mental countdowns or milestones of you know what that will be so much, then he can get this medicine or if something bad happens, or then he'll be eligible for this procedure if he needs it. So I remember those kinds of milestones. And I think I have those in a very, very condensed version with Ozzie where I just, it just isn't that big of a concern to me, because I know that I've just seen how much he bounces back. And, and to be fair, we haven't really had to travel that path yet with him, just because he's my pandemic bubble baby. And so he hasn't really been exposed to that many germs or illnesses. And so, but with injuries, I can relate and compare those. Because he has had, he has fallen, and he has had head bumps and he's had, you know, things like that. And to see just how just how much his body prepares him to heal from stuff, like in that category. It does give me a lot of peace and relief that I didn't get to have with Luke, because his body did not do the job that it was supposed to do, in a lot of cases.
Yeah, wow. I'm sure it must feel really humbling. It almost seems like you kind of always toeing the line of keeping anxieties in check. And also, like remaining grateful that you don't have certain worries with Ozzie that you do with Luke. And...
I couldn't agree with you more, I think, and I hope I'm going to communicate this clearly. I've seen, or read the articles on on fairness versus equality, right? And it's not that I have less concern for Ozzie if he bumps his head, or if Luke bumps his head. It's that I know that a different response is required.
If that makes sense?
It does. Yeah.
I want to talk about your Atypical Truth. If you could go back and tell your past-self, anything, what would it be?
I think about this question a lot in the context of, "If I knew then, what I know now..." And it's easy to jump to that conclusion of, oh, I would just give myself all the information. I love information and always seek out the most information before making a decision. So part of me thinks that I would have so much to tell my past-self. And then again, part of me thinks maybe I would say nothing at all. There's no way to really describe what this world is like to someone who hasn't lived it. So part of me is almost grateful that we weren't told everything that we'd be living through right away. I don't know. I don't know if I would, or how I really would have handled it. And truly now, I think about what if I could peek into the future? And I don't think I would.
It'd spoil the surprise.
Yes. So if I were to tell someone, which 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 early day, medical complexity journey 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. So you are the only one who's 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 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.
(loud thump from slapping her hand to her heart) Oh, my gosh.
If only I had such clarity, such an earlier time. It is something I still need to remind myself of a lot.
I'm speechless, but I still have questions for you that I have to get through. I don't even know how I'm gonna do that. Oh, so much of that rings true. I don't think you have to be a heart-mom, or heart-parent for those words of advice to be very meaningful. They very much resonate with me. So thank you. Where were you? We were going through it at the same time where we? Practically!
We were! We were in like different hallways going through the same trenches.
I guess this is just proof that like, I needed this back then. I needed to hear something like this back then.
So thank you for that.
If there was one thing that you could share with other complex needs, families, or maybe specifically, even CHD families, to help them in their journey, what would that be?
I think this would probably be more on the universal side, for medically complex families or families that find themselves to suddenly become medically complex families. And it's something that I had to realize very quickly. But I know growing up, I thought doctors were flawless. They just they knew they were the experts, they had everything under control. They did all of the school that I couldn't even imagine taking all or going through that, that level of rigorous education. I think that through this experience, I would share with maybe those newer families that realizing medical professionals, even those big names and those intimidating titles, that at the end of the day, they are humans. And at first, that realization might be scary, because you you do acknowledge that they are humans with flaws, and that they make mistakes, and that they don't know everything. And that is a very scary realization. But there's also the very comforting side effect to that realization. And that is that they are passionate, and that they do have emotions. And they do relate to you on a personal level or that they can if you open up to them in that way. So I think that really helps in my communication with medical professionals and my advocacy for Luke, is just knowing that every single person regardless of education, or title, or how many letters are after their name, that everyone performs better when they are supported, and that everyone can provide support.
So true, including the parents. You know? It's a two way street. You know, it took me a long time to come to that realization. I held these professionals on such a high pedestal, and they deserve it. But I also needed to see them as humans. And when I saw them as humans, the dynamic in our relationship changed. And it improved drastically. So it's probably one of the biggest beneficial changes or dynamic shifts that we experienced in our medical journey. Not going to include this. I just wanted to tell you personally, that was such a powerful answer. So thank you.
Oh, I think you should I mean, it truly because it is it's, it becomes mutually beneficial. I don't know how long it took me to think of the perspective of being the specialist that see so many kids in clinic, and that's all that they see. Or they only have seen Luke at his worst medical experiences, right. And so they don't know. They don't know all the, the awesome, hilarious parts of him. Because they're, they're only seeing him when he is sick, or when he is in pain, or when he is recovering.
And then they're going to the next room and seeing that kid at their worst. And then the next and the next, next. And then their going home. And they're trying to just be people like you and me. Probably getting frustrated with their spouse or tripping over the toys or stepping on a Lego. Like, they step on Legos too!
Yes, it is so true!. And so I think about that. I'm like, if I can well, first of all, I never turned down an opportunity to like share pictures or funny experiences with Luke, or Ozzie. And so if I can bring something like that, if I can bring a picture that he colored, or actual photo of the boys doing something fun, like blowing bubbles or playing in the pool or something like that, right? Then I try to remember to do things like that. Not every time, right because my goodness. But every so often, I try to just like have that human element be part of Luke's medical team and their communication. That way, they just they see Luke as this brilliant human being that he is, that I see him as we're at least, you know, just a step closer to that.
And that, my friends, is our amazing guest host for Season Two, Kristyn Newbern. I typically try to end each episode with some sort of eloquent words to wrap this up. But I know full and well, then nothing I say will touch the powerful messages that Kristyn just left us with. And I really don't even want to attempt that. So I just want to say thank you all for listening to these first few personal episodes with Kristyn, where we got to learn more about Kristyn and her life story, both before and after she became a mom to Luke and Ozzie. And it's been an absolute honor to produce this season with her. We have some really amazing conversations lined up for you. Next week, you'll be hearing from Katie Palmer. Katie is a fabulous young woman who I have had the pleasure of getting to know since Kristyn invited her onto the show. As an adult living with Noonan Syndrome, Katie is an international advocate for families and children who are navigating this same rare disease. And I have to say, this conversation with Katie was everything I didn't know I was in need of. It truly helped to shift the wind in my sails. And I just can't wait for you to hear it. So stay tuned for next week's episode with Katie Palmer.
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