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Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE


Kristyn and Luke Newbern, 2022 Light blue background with black font that reads “Kristyn & Luke” along the top, and “At The Heart” at the bottom, followed by “Of A Rare Disease With Many Moving Parts.” At the center, frame in a circle is a photograph of Kristyn Newbern, white female with long blonde hair and wearing a red sleeve-less shirt and holding her son, Luke Newbern. They are pictured facing each other, staring lovingly into each other's eyes. The sun is shining in the background and they are enveloped in warm sunbeams.
Kristyn and Luke Newbern, 2022 Light blue background with black font that reads “Kristyn & Luke” along the top, and “At The Heart” at the bottom, followed by “Of A Rare Disease With Many Moving Parts.” At the center, frame in a circle is a photograph of Kristyn Newbern, white female with long blonde hair and wearing a red sleeve-less shirt and holding her son, Luke Newbern. They are pictured facing each other, staring lovingly into each other's eyes. The sun is shining in the background and they are enveloped in warm sunbeams.

Luke is very intrigued by engines and he loves learning how things are built, connected, and the ways in which all the parts work together to function as a whole. Like the engines that Luke loves exploring, his rare condition involves a lot of interconnected and moving parts. Unlike the instructions or manuals that one might receive with engines and lego sets, there are no manuals or instructions for building the best parent for a child with a rare disease. Today we learn more about Luke's complex medical journey as Kristyn shares her experience navigating his rare diagnosis. Not only did Luke's diagnosis involve many interconnected and moving parts, so did Kristyn's evolution into life as a mother and caregiver to a child with complex medical conditions. In this episode, we touch on the challenges of that evolution as we share some of the lessons we have come to learn and some of the beliefs or assumptions that we've had to unlearn.

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Episode Transcription

Kristyn 00:01

What are the parts of a car engine?

Luke 00:05

I don't know.

Kristyn 00:07

There's the gears.

Luke 00:10


Kristyn 00:11

What else?

Luke 00:13

The pipes.

Kristyn 00:15

The pipes...and the pistons.

Luke 00:16


Kristyn 00:17

And what else?

Luke 00:19

The engine.

Kristyn 00:22

The engine.

Luke 00:22

And the gears. More gears in there. There is so many gears in there.

Kristyn 00:29

They're all turning, helping each other to turn.

Luke 00:31

Uhhuh. They're all connected and then, and go go go. Superfast that makes them go go fast. But when they un-connect, all of them un-connect, it makes the car stop and turn and crash!

Erica 01:07

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 last week's episode, we got to meet the Newberns. Well, primarily Kristyn and Luke. Kristyn is a fellow medical mom to her son, Luke, who is that sweet little voice that greeted us today. Luke was born with congenital heart defects and later diagnosed with a rare genetic disorder called Noonan Syndrome.

Erica 02:01

When Luke was asked how he wanted to celebrate a recent trip to the doctor's office, Kristyn expected the stereotypical little kid answer of, I don't know, getting ice cream or going to the park. Instead, Luke stated that he wanted to open the hood of her car to check out the engine and all of its parts. You see, Luke is very intrigued by engines and he loves learning how things are built, connected, and the ways in which all the parts work together to function as a whole. Like the engines that Luke loves exploring with all the gears, pipes, valves, belts, and wires; Luke's rare condition, it involves a lot of interconnected and moving parts. And today, we're gonna learn more about Luke's complex medical journey, as Kristyn shares her experience navigating his rare diagnosis. Not only did Luke's diagnosis involve many interconnected and moving parts, so did Kristyn's evolution into life as a mother and caregiver to a child with complex medical conditions. In this episode, we touch on the challenges of that evolution, as we share some of the lessons we have come to learn and some of the beliefs or assumptions that we've had to unlearn.

Kristyn 03:37

He has a very rare genetic mutation that was caused, actually by a very recently discovered genetic variant. That sounds a bit complicated, and actually, his diagnosis isn't nicely packaged enough to have just a, an independent name, because it was so recently discovered. But most people when they meet Luke, or if they know Luke, they know about his heart journey, because that's been the most invasive and frankly, life-threatening part of his medical genetic diagnosis. So Luke was born with two congenital heart defects. The coarctation of the aorta, which it's a narrowing of that little loop on top of the heart, kind of important, that's the part that pushes all the blood out to the rest of your body. And then he also was born with a ventricular septal defect, or a VSD, which is a hole in the middle wall of his heart. So even though Luke was born with two congenital heart defects, or CHD's, he has had five heart surgeries to date. So two to repair those defects and actually two emergency open-heart surgeries that were unexpected, but resulted from complications from the repair surgeries. And then most recently, he had a pacemaker put in after complications from the most recent open-heart surgery that resulted in heart block.

Erica 05:16


Kristyn 05:16

Whew! So that is, in a nutshell, the summary of Luke's heart journey to date. But that heart journey is really only part of an overall diagnosis. So in 2018, that was when we came to the discovery of Luke's genetic diagnosis after a long and seemingly meandering journey of specialists and tests and inconclusive results. And everyone agreeing that something was going on, wasn't just the heart, the cardiology stuff, it was there was something more. He wasn't meeting these gross motor milestones or some of these fine motor milestones. There were abnormalities that were not consistent with just his CHD's. So in late 2018, we actually ended up doing a whole-exome sequence, which is basically a genetic test that has every single genetic variant known to science. So that test came back showing us the genetic mutation that I described earlier, which was only discovered in 2015. So just three years prior to us doing this test. It doesn't have an independent name for the diagnosis, but it has been associated under the Noonan Syndrome umbrella. So everyone wants to everyone always wants a name, right?

Erica 06:51

Ummmhmm. Yeah. (both laughing)

Kristyn 06:51

We always, we always think that that means that there's the answer. So...

Erica 06:58

We have a very similar situation with both kids and people always ask, "So what is the name?" And I'm like, "Well, it's, it's not so much about the name it is that it falls in line with this other group of known variants..."

Erica 07:11


Erica 07:12

"...that you may recognize." Because even if I had told them a name, since it's so new like for our kids it's the only one that we know of, they wouldn't know the name even if I told them.

Kristyn 07:24

Right. And I think that need....Well, first of all, we love our labels, right? We love to know, for ourselves for others, just so we like all of a sudden you're in this box, we understand you and we know what's what you're going through. So I totally empathize with that, because that's what we were seeking as well. We wanted and not only a label, but we wanted a prognosis. Right?

Erica 07:49


Kristyn 07:50

That's why parents seek out a diagnosis. That's why it's so terrifying to not know. Sometimes even more so than when you get bad news. If that makes sense.

Erica 08:02

Yeah. It's a weird thing to celebrate the prognosis, to celebrate putting the label on something.

Kristyn 08:10

It's so true. So we kind of got a half answer, if that makes sense. I mean, it's scientifically miraculous that we, that Luke was born when he was born. And we were able to come to this diagnosis. But at the same time, since it was only discovered in 2015, there are so few recorded cases, certainly no long-term studies. And so a prognosis really is not available for us. We have kind of an umbrella of different cases and things that we might be looking for or that might come up that are related to other kids and adults with Noonan Syndrome. But since his variant is different than most of the variants that cause Noonan syndrome, it's always kind of an asterisk by his name, if that makes sense.

Erica 09:06


Kristyn 09:07

So, Luke, his other medical challenges include low muscle tone, low muscle strength. He has shorter stature. So if you saw him walk into a room, you might guess he was maybe three, rather than four and a half. Otherwise, really, you might not even know he has a disability if that makes sense. He unless he were climbing stairs or trying, you know, kind of sitting down and standing up again, he does that at his own pace, and things just look a little bit different for him in that category because of the low muscle tone and low muscle strength. Through physical therapy and occupational therapy, that's how we've really been addressing his gross and fine motor delays and development.

Erica 10:12

Diagnosis Day. Diagnosis Day is a term many of us in the medical community use when referring to the day that a diagnosis is received. No one ever expects, nor the prepared for diagnosis day to happen during a routine ultrasound. For many families, that ultrasound and anatomy scan, and marks celebratory halfway mark and pregnancy. It is this very special and memorable moment for many people. One that is often depicted in movies and television, because it's typically the first time you get to see your baby in motion. We all expect to leave this appointment with our hearts full of excitement, our minds racing with ideas for the name, and Pinterest pages, filled with ideas on how to decorate a nursery. What you don't expect is to leave that appointment with your child's life-threatening diagnosis in hand. No one ever expects to leave that appointment with a head full of fear, a heart full of ache, and no idea what the future holds. Kristen and I, we both have children who were born with serious life-threatening conditions and our experiences were drastically different for many reasons, but one prominent difference started at that anatomy scan. It was the difference between knowing versus not knowing about a congenital diagnosis in advance.

Erica 12:05

You learned about part of this diagnosis, that you've previously described in our personal conversations as being like one of many moving parts, one of those more prominent parts being the CHD. You found out about that while pregnant, correct?

Kristyn 12:24


Erica 12:25

Wow, what was that like? Because here's the thing, the grass is always greener, right? Like,

Kristyn 12:32


Erica 12:33

I've often thought things would have been so much better, maybe we would have been more prepared if I had known while I was pregnant with certainty that something was wrong with Margot. Or with certainty that Margot had some atypical developments, you know, something? So again, the grass is always greener. And I'm just kind of curious, what was it like to be given that diagnosis while pregnant? What was that like for you?

Kristyn 13:01

Well, I guess just my initial reaction to your story and your experience with receiving, you know, with all of that hitting you like a ton of bricks after giving birth; I mean, I'll agree with you 100%, that, if I had to pick, I would absolutely pick learning ahead of time and being given at least just a moment when I wasn't a brand new mother to understand or do some research or sob into the steering wheel uncontrollably. You know, I would say with 100% certainty, the more of these diagnoses that we as a society can support, you know, through research and funding and anything like that to give parents more time to prepare. That's something that I don't think there's any, there's any argument against. So I would plug that, for sure.

Erica 14:10

You said a keyword in that which is support, there are things that you likely received that were really beneficial for you in the healing process of this. Things like the Fetal Care Institute and just having a team established and ready and knowledgeable on your history. That is priceless. I mean...

Kristyn 14:30

Yes. 100%. I couldn't agree more. I mean, I will, I will not sugarcoat it. I still remember every single breath of that day that we found out. You know, I remember it being a Friday afternoon. I remember being 29 weeks and two days pregnant. I remember walking into that Fetal Care Institute thinking that we just had to get some more cute pictures from the anatomy scan because he was in a weird position at the 20-week ultrasound. And I mean, you want to talk about ignorance, and not knowing what I was walking into. And I would even say I felt like I walked into that appointment, a different person than walking out of that appointment if that makes any sense. So it wasn't this beautiful, nurturing experience that I felt like, "Oh, yes. And now I have all the tools that I need to continue down this path." 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 it's not necessarily that like being pregnant learning that diagnosis, or at least about the heart, that I was, you know, completely prepared or equipped. But I felt like we were supported. And that's, that's so important, and any effort to help other parents feel supported, going into battle...because it is; I think, I think those are valiant efforts that need to be supported.

Erica 14:54

Wow. I agree.

Erica 17:01

Having support through an experience like this is truly invaluable. But even the best support cannot fully prepare you for your new reality of life as a parent, let alone a parent of a child with a very serious and life-threatening heart condition.

Erica 17:24

That was part two of your life story when everything just kind of transformed for you. What life changes did you and your family have to face, and how did you navigate those, once Luke was born, and you and him, your family as a whole really began the journey of healing?

Kristyn 17:48

It, it was hard. I mean, I would say any parent’s life changes when they bring a baby home, right. And being a parent is a series, or a saga, of lessons in learning that you are not in complete control and that you are supporting this entirely independent other life that you brought into this world. But bringing home a baby, who has had heart surgery at nine days old, who spent a month in the hospital, who came home to recover while still in heart failure. That's a whole other chapter in lessons that I was not prepared for in parenting. We learned in that first year what it was to balance, I guess. And what I mean by that is in the medically complex community, everything is about maintaining this very delicate balance of care.

Kristyn 19:02

You know, prior to Luke, I was blessed to have a very healthy life. My husband is very healthy. We don't have any family history of genetic mutations or anything like that. We were totally unprepared for what it was to be thrown into the medically complex parent's life. I used to think that surgeries or medicines were fixes, right? So you break a bone, you get the surgery, you do the therapy, and you're fixed! That's great! If you have a medical condition or you get sick, you take the medicine you get healthy, then that's it's fixed! That's great! So he even learning about Luke's heart, I thought, okay, there's two defects, there's two surgeries, we get through the surgeries, and we can move on with our totally normal lifestyle...and like our world, and getting back to babyhood and, you know, things like that. So, so really needing that lesson to be just ingrained into our mind that every medication is a choice, you are accepting side effects, you are accepting risks. Every surgery has complications, every surgery has complications. Some greater than others, some riskier than others. And yet, you have to forge a path with your medical team that has a lot of variables. And it's not necessarily all drawn out for you in the beginning, and you're not guaranteed results on the other end. And you might get those results, but you're also giving something up. So I think that was the biggest lesson that we learned. And that was so challenging to learn in the first year of Luke's life, probably because we were coming from the complete opposite end of the spectrum where we lived in this ignorant bliss, of what medically complex needs and diagnoses were.

Erica 21:24

Wow. I don't even know what to say to that, because it was so profound. And so very true. I mean, you were on the side of the field where yeah, you have a heart condition, you have these procedures that they've recommended. I was on the other end of the spectrum where there wasn't necessarily a procedure, but I was convinced there was a medication that would fix this, we just had to find it. Or there was a combination that would fix this.

Kristyn 21:56

I empathize with that feeling. And I don't know if you are coming from it from the same. For the same reason. But mine, I feel like my whole life I was taught if I work hard enough, or if I study hard enough, if I am the most dedicated, then I will find success, we will get the results that we're looking for. And we will find, you know, find the cure or find the medication like you said, or will you know it, it just, it was this release of control and of autonomy, I guess that was so hard to learn.

Erica 22:41

Becoming a mother to a child with disabilities is a completely different and separate experience from growing up with disabilities. I'll be the first to say that while this experience was unexpected and difficult to adjust to, there was a part of me that told myself, I had an upper hand and navigating all of this because I grew up in it. I practically lived in the hospital. Life-sustaining medical equipment, it was always a part of my room decor. Having surgeries on the horizon, that was a frequent experience. And communicating with medical professionals was something that I had been doing long before I even had a voice. So yes, in many ways, I had an understanding of this life that most do not. I was growing up with disabilities, and experiencing life with no concept of it being any other way. Any hardship that I was faced with, was just a part of my life. I had nothing else to compare it to. But my mother did. And what I've come to realize in all of this is that I had very little understanding of my mother's experience as my caregiver and my advocate. Like most other non-disabled individuals, she had a whole life before me of not being aware of, nor being impacted by, the systems within our society that were not built to support people with chronic illness and disabilities. The moment I was born, she was thrust into a world of advocacy, and a lifestyle that required her to provide a higher level of medical care than what she had ever imagined or experienced before. Just like my own mother, in a short amount of time, both Kristen and myself, we had to learn and unlearn so many important lessons. Not only did we quickly have to become self-taught medical experts on our children, you know, researching the diagnosis, learning all the medical terms, understanding the hierarchy of the medical world, and, of course, all the possible interactions and side effects of every medication our children are given. We also had to unlearn beliefs that we had about our society, we had to come to terms with our new understanding of the world. And then we had to learn how to balance interacting socially with these profound lessons we have just learned and this new version of ourselves as protective caregivers. Personally speaking, becoming the self-taught medical expert of my children, it was the easier part. Learning how to socialize again, that was the challenging part. Even when it came to something as simple as having a conversation. Understanding the negative stigma surrounding disabilities, I went into this life of advocacy, ripe with positivity, and a headstrong attitude of finding a cure or fix. With time, and with education from my peers in the disabled community, I learned just how harmful that inauthentic positivity could be, and just how liberating it was to actually accept him talk about the challenges I faced. It was and continues to be a constant struggle to learn how, what, and with whom to share things with. Creating this podcast was a way for me to strike that balance between celebrating all the awesomeness of this life, while also having a safe space to share about the challenges.

Erica 26:45

So I've touched on this in last season, just kind of coming to terms with my own internalized ableism. I did get to experience life decannulated. You know, life without a trach. I was told I never have a voice and now I have a voice. And I worked really hard. And I did all these things. And I had reached all these milestones of achievement in my life. So I too felt, I subscribed to that idea that if you worked hard for it, you'd get it. And I applied that same mentality to my child's diagnosis. I thought if I just research it enough, if I keep pushing, we will cure this. Now, let me tell you, I have changed immensely. Talk about chapters of this life, cure is not a word I use anymore.

Kristyn 27:41

I hear that. It implies that there's something inherently wrong. That's actually a point of conflict, you know, internal conflict that I've struggled with a lot. And Erica, your episodes on internalized ableism and, you know, you want to talk about diagnosing something, like that put a name to a lot of the internal struggle that I've felt, and that I'm sure so many parents have felt over the years. Whether it's, you know, they say "grieving the normal," anything like that, where you know, you kind of... Your first instinct is that you're concerned about your child, and you want them to be safe and secure. But there's also, on some level, a fear or concern that is he ever going to be able to live independently? Is he ever going to be able to make friends? Is he ever going to be able to get a job? Is he ever going to be able to...well, in today's world get health insurance? What, you know, what options in this ableist society are instantly and forever not available to my child?

Erica 28:52

Yeah, exactly.

Kristyn 28:54

Yeah, that's so and that's, that is such a struggle as a parent to deal with because that on one hand, you know, I, I don't want him to have to change or be anyone but himself in order to, you know, have these things that every you know, that so many of us consider just, you know, quote-unquote, normal or expected in our lives. But I also, you know, we also live in this society and so it's it is a struggle as a parent to deal with our abled society and our own internalized ableism and the fears and the, you know, issues that result from that.

Erica 29:37

Absolutely. But the cool thing is, the more that we listen to our children, the more that we listen to people like our children, other disabled people/disabled adults, we slowly learn how to come to terms with these belief systems that we've unconsciously had built up inside of us based on functioning within the societies. And I think that's been, I realized now that it's a privilege when people have a child and they don't have to think about in five years, in twenty years, will they get health insurance because of this thing? It's this like, reality that is just a component of this life and it's one that we don't really talk about.

Kristyn 30:36

No. It's just part of this very isolating experience. And I don't know about you, but I don't I don't enjoy giving bad news.

Erica 30:53

Who does? Ugggh.

Kristyn 30:57

I don't enjoy, you know, and like reliving. And then, you know, you wind up having to comfort the person you're delivering this news to someone...

Erica 31:06

The most awkward dance, I swear.

Kristyn 31:08

So weird. And, you know, on the other side, sometimes you end up having to like or being totally deflected or diminished in your experience. And at the end of the day, those are the well-meaning people too, you know? I mean, there's no right answer to these conversations that are so difficult. And that's why, if you're like me, you oftentimes just avoid it entirely and that's also a disservice. And so I think that's why this platform is so important.

Erica 31:43

I agree. We're all learning how to exercise this muscle of difficult stuff that is our life. And so yeah, there's no right or wrong way. I mean, so long as we're not causing harm, right?

Kristyn 31:59

Yes. Well, and Erica, that's why I was so drawn to your podcast in general, and the concept and the way that you have woven in the professional interviews and the personal conversations, because, you know, that's something that spoke so directly to me. I find that my life is kind of split. I feel like I often have one foot in this professional, corporate, everything's fine world. Right? And, you know, I kind of keep that like high-level glossy version of, you know, if they even know anything about Luke's story or our medical journey, it's very nicely packaged, and, you know, wrapped in a bow. And then I have one foot in this medically complex, you know, community where we're all searching for answers. And we're all dealing with this uncertainty. And we all have these struggles, you know, related to all of the not only diagnoses but the daily struggles and the insurance struggles and everything else that we, as medically complex parents deal with. And I often feel like I'm doing the splits, to try to balance both of them, and do it appropriately and don't do a disservice to either side and keep everyone happy. And so I feel like that's so difficult to do. And that's why I think, one of the many reasons why I think this podcast is so important, and what I hope to accomplish in maybe giving some of that insight to people who would be too nervous or anxious to even ask in the first place. That maybe you're giving this perspective to people that they can absorb it privately and, you know, gain some perspective without having to face it, or make someone else relive it, or be confrontational in any way. And then they can take that and learn and improve and grow. I suppose.

Erica 34:04

I hope so. I think we will.

Erica 34:08

You've stated that you're someone who really didn't have a lot of medical experience. So what things did you do to prepare yourself for this new life?

Kristyn 34:20

So you are entirely right in that statement, where I, my medical knowledge was, like, Grey's Anatomy. I mean, I have zero medical education experience. I…you know, my hospital visit prior to Luke included, you know, visiting grandparents when they were sick and in the hospital. It was kind of that natural life cycle that you would expect and so I really had no idea what I was getting into, for as far as a life change with this diagnosis. I am however I do have an engineering background. And so I'm very analytical and I enjoy research. And I enjoy information and data and statistics. And so, so research became my coping mechanism or my preparation tool. So I looked into medical publications. We were actually able to meet Luke's heart surgeon and tour the pediatric intensive care unit at the hospital where Luke will be having his surgeries. And so being able to do that, while pregnant. Again, talk about support, talk about giving you just an ounce of confidence or courage that we would not have had if we had not known this diagnosis prior. 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 2020. 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 or something that I could accomplish, or I could, again, fix right? But I wasn't...

Erica 36:40

Oh, my gosh, mean, you are so alike.

Kristyn 36:42

(laughter) Oh, that's so comforting, Erica. Because sometimes I feel so, I don't know, o non-maternal, in reflecting on this, and that that was my response. Because one thing I deliberately did not do was seek out other parents. And I did not seek out, I did not go to the Facebook groups, I did not look for emotional support or social support of any kind. We told our parents, both my parents and my in-laws, and we told, you know, immediate family, and then a close group of friends. But really outside of that I don't, my coworkers didn't know what was coming in my, you know, our mutual friends. It really wasn't something again, because of that. I didn't want to deliver bad news to them. If that, gosh, that sounds awful to say out loud. But I didn't know how maybe is what I should correct that as. I didn't know how to deliver bad news of that nature to them. I didn't know how to answer the follow-up questions that they might have. I didn't have the emotional maturity to communicate that message yet. And I viewed it as such a temporary hurdle for us. So it was almost as if I took that step that was really acknowledging that we were in this forever and that we needed support.

Erica 38:16

Mm-hmm. Damn. I think that's gonna resonate with a lot of people.

Kristyn 38:24

I just poured my heart out for you. There. (both laughing) I honestly, I don't know if I've ever said that out loud. Yeah. But it's true.

Erica 38:36

I think I think we can all relate to that in some capacity. I think they're the people who do the data collection. You know, I was creating spreadsheets at the NICU bed. That was my way of coping. And you're right. I don't know that I did a whole lot of I mean, it took me...I think Margot was almost a year before I was like, "Oh, Facebook groups. I should check those out." Life-changing. What a wonderful new chapter of my life. But I think I was forever in that mindset of, I just need to, I need to do the data part. I need to do the research. I need to fix this. Yeah. And then there are people who maybe do the opposite, you know, I'm sure there's no wrong way.

Kristyn 39:28

Yes. I think you're right. I would agree with you. And you said it in such a glass-half-full because I was about to say "I don't think any way is right." But yes, I think there's probably no wrong way to approach it. It's all just a matter of, you know, coping. It's how your body and your psyche approach eminent trauma. You know, I talked about all of this in the past tense, but I still deal with trauma in that way. When, you know, the past heart surgeries for Luke have been unexpected and emergency. And I have had to, on both occasions, drop everything. From a professional standpoint, from a personal standpoint, from a social standpoint, you know, I essentially disappear from the world and hope that everyone's okay with picking up the pieces. You know, it's very, very difficult for me when we are in the moment, we are inpatient, I kind of default to isolation and to disconnecting. And then when we approach a point of stability, that's when I have the security, I suppose, to really figure out how I bring others into the fold if that makes sense. And it's not, by the way, that is not how anyone should deal with this, or should not, it's just how I do and I, you know, I've had five different times of experiencing this, and I do see that pattern for me. It's very difficult for me to carry everyone on the journey when we are in the heat of it.

Erica 41:15

There's also the whole component of you giving 1,000% of your energy to your child in those moments.

Kristyn 41:25


Erica 41:26

Who has the capacity in that time, to do anything but isolate? It takes everything out of you and more. Like suddenly, I know, there are times where I'm like, I didn't think I had anything left. But somehow I'm still going because they need me to.

Kristyn 41:41

Yes. It is, it's so true. You just have to there's no other choice.

Erica 41:45

So you shouldn't have too high of expectations of yourself in situations like that, I think is what I'm trying to say.

Kristyn 41:50

I appreciate that and so far I have been met with nothing, with really grace from everyone else in my world to have understanding and knowing that they'll catch me on the other side.

Erica 42:08

We refer, we use a lot of words about like battles and stuff like that. And I don't love that. But at the same time, I think that is the most tangible way of describing things because a lot of the same emotions and chemical responses occur in our bodies from that fight or flight response, that survival mode that kicks in, it's a very primitive thing that occurs and we have, for the most of us, we have zero control of it. We are just on autopilot. And when you talked about putting the pieces together later, we're not just putting together the pieces that fell apart when we were gone. We're putting together ourselves because everything is drained from us in that time.

Kristyn 42:53

You're so right. That's such a good way to put it too because it is. I don't have any, I don't have anything to give anyone else if that makes sense.

Erica 43:02

Mm Hmm. Yeah.

Kristyn 43:04

So it is that visceral response, of shutting down everything that's not critical to the system.

Erica 43:13

Exactly, yes!

Erica 43:30

In many ways, this chapter of Kristyn's life is what writers would describe as the call to action or the call to adventure. It is the part in which a drastic change forces a character to experience separation from the ordinary world. A separation from everything that makes us feel comfortable and safe. This is the part in which the main character descends into a world of unknowns, risks, danger, both physically and emotionally. Unlike a story, with a character arc all mapped out, this is real life. This is happening in real-time to real people. There's no option to skip past the pages of hard and get straight to the good stuff. For the Newbern family, many challenges still lay ahead and they have to face those one day at a time. There are many lessons to be learned and many mentors along the way, who serve as guiding voices to help them confront the uncomfortable and adjust to their new norm. Armed with the most powerful force of all, their unconditional love for Luke, the Newberns have embraced this journey, and all the ways in which has transformed them.

Erica 45:06

Next week, we get to hear all about life with the Newberns now. We get to hear more about who Luke is today, a full blown pre-ker, and a big brother. And of course, all the challenges and fears that come with that. We will also learn more about Kristyn's evolution, most prominently the evolution of her being a mother of one to a mother of two, and just how vastly different those experiences have been.

Erica 45:42

If you love the artwork for Season Two, head on over to our online shop, where you can find a variety of merch options. I personally love the tri-blend T-shirts and the midweight sweatshirts. If you love what you hear, and you want to support this podcast, you're welcome to donate even just one dollar an episode helps sustain the future production of this show.

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 Or you can also find me Atypical Truth on Facebook and Instagram.

One way to help promote this podcast more widely is by sharing it with as many people as possible. By taking a few minutes to subscribe rate and review. It'll become more visible to those who are searching it out.

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.

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