FOR FEAR THAT MOST PEOPLE WOULD NOT UNDERSTAND
Hosted by Erica Jolene and Kristyn Newbern, with special guest Nichole Rosenberger
If you know, you know! Today we embrace the hard, but necessary conversations that we should all be having but often avoid for fear that people would not understand.
Once again, Nichole Rosenberger has joined Kristyn and Erica to discuss everything from finding solace in the connections we have made with other rare disease families, the change in our perspective regarding our identity as parents of children with disabilities, the burden that mothers feel with the societal pressure of having a "healthy baby," our experiences concealing a second pregnancy, and the challenging decisions we came to when each learned that we were carriers of a life-threatening genetic disease. Finally, Kristyn and Nichole share their thoughts on how they one day plan to explain these decisions to their children. This episode is the finale of this 3 part series which has centered around the subject of IVF and Preimplantation Genetic Testing (or PGT).
[Image Description: Light brown background with a white font that reads, “Conversations We Avoid Having For Fear That Most People Would Not Understand.” Framed in a circle at the center of the image is a photo of Kristyn when pregnant with her second child, and Luke, her firstborn, who is kissing her belly.]
#Genetics #IVF #IVFjourney #PGT #PreimplantationGeneticScreening #PreimplantationGeneticTesting #GeneticCounseling #CHD #HeartMom
Links related to this episode:
National Society of Genetic Counselors
Preimplantation Genetic Testing (PGT)
I think it's fair to say that this podcast is not being recorded in a professional studio and that lends to many background interruptions, which we try to edit out of each episode. This season's most notorious interruption has been brought to you by our unofficial podcast therapy dog, Charlotte Newbern. I want to admit defeat in this episode in that I could not edit out all of Charlotte's snores. So enjoy this lighthearted entry to a very intense episode.
Background I don't know what it is.
I think it's Charlotte (both laughing). Let me try let me try that again.
We are having this really serious conversation and I'm just hearing garble-garble.
She's like, "flabbabla." Charlotte, Charlotte!
She's like, Can I just go to bed?"
Is that Charlotte snoring in the background?
Can you hear her? Hang on one second. Charlotte (whistles), you gotta wake up.
I'm so sorry, Charlotte.
Look at her. She's so mad at me. You're like, you don't want snoring in that like long story?
Shoot Charlotte. Charlotte, wake up! She's like, Oh my gosh.
She's like your own like sound machine back there.
She is! She's like, Oh, she's so loud too. Sometimes I'll have to like nudge her in the bed because she'll keep me up.
What's her dog's name?
What kind of dog is she?
She's brown. My favorite. And cute and big. And I love to play catch with her.
Welcome to Season Two of Atypical Truth. I'm your host Erica. Jolene. My guest-host for this season is Kristyn Newbern. Kristyn's life was transformed when her son Luke was born with congenital heart defects and later diagnosed with a rare condition called Noonan Syndrome. I like to think of this episode as the finale of a three-part series, which has centered around the subject of IVF and Preimplantation Genetic Testing, or PGT. Once again, Nichole Rosenberger joined Kristyn and I for this very important conversation. So I would highly recommend that before you listen to this episode, be sure to listen to the previous two episodes titled, "Rare Friends" and "Genetic Counseling," because many of the topics that are covered in today's conversation, were influenced by the information that was shared in the past two episodes.
The conversation that takes place in this episode is hard. There's no other way to define it. It's just a hard conversation about many different subjects that we don't usually hear, or openly share about, which also makes this conversation a necessary one. And, my favorite kind of conversation. And I think what makes this episode so special, is that it involves three very different perspectives and experiences from three different rare disease moms. I mean, we really get vulnerable in this episode. And we do so with hope that it helps other rare disease parents feel less alone when facing similar difficult decisions. Kristyn and Nichole both have children with a known genetic disorder. And because their children's disorders were known, they both had the option and ultimately chose to pursue IVF and PGT to build their family. In contrast to that, my family didn't really have that option, because our first child's genetic condition was not known, or it hadn't been discovered until we had a second child, born with the exact same constellation of symptoms. Having had two kids with the same rare disease and medical complexities, it's meant that there's been a lot of conversation in my family about the decision to have or not to have more children. So I had a lot of very intimate questions about what it was like coming to the decision of choosing IVF and PGT to build a family.
And I deeply appreciate that Kristyn and Nichole did not shy away from talking about the really difficult aspects of coming to this decision. We discussed everything from finding solace in the connections we've made with other rare disease families, and the change in our perspective regarding our identities as parents of children with disabilities, and the often static societal perception of us as parents of kids with disabilities. We share about the burden that mothers feel with the societal pressure of having a quote-unquote, healthy baby. And you can probably guess what we make reference to. We each share about the challenging decisions our families came to when we learned that we were carriers of a life-threatening genetic disease. And we also talk about our experiences in concealing certain aspects of our second pregnancies, for fear of judgment, or really just out of wanting to avoid conversations that we weren't ready to have. I share about what it is like to grow up with a disability, knowing that there is some risk of passing those disabilities on to my own children. And finally, Kristyn and Nichole share their thoughts on how they one day plan to discuss these decisions with their children.
I am truly so honored to bring this conversation to you today. Thank you, Kristyn and Nichole. I know that we were all very anxious about this episode to release. So I also want to provide the disclaimer that this conversation, it's based on our personal experiences and our opinions. It does not reflect the opinions and experiences of all rare disease families, nor the community of people with disabilities. But again, I just want to state that sometimes these hard conversations are the most necessary ones.
Last week, you had both touched on kind of a theme, which was the phenomenon of comfort that you received from knowing that another person who you knew in your real-life had a similar experience, a similar medical journey. You know, it really got me thinking because I understand that. Health conditions, disability, genetic or rare diseases, and chronic illness, those things do not discriminate. They can happen to literally anyone. I think that was a hard but honest lesson that each of us had to learn in this journey. So I wanted to talk about that more. Specifically how it was comforting to find someone like yourself who experienced this, but also, as a reminder that we're all vulnerable to this, that no amount of money, fame, or education, or even like a devotion to a specific religion, nothing is gonna promise you healthy. Nothing is going to protect you from illness or accidents that could result in disabilities. or just to complicated a medical journey. So I was wondering if you guys want to explore that with me a little bit.
So, I have a thought on this also. I think, yes, you know, there's comfort in having that prior connection with Kristyn. And, you know, those connections, yes, they're meaningful in their own special sort of way. But I've also found that I've met people because of Liam and his conditions. And I have found connections with them and commonality and a lot of respect for the differences in our lives. Whether it's conscious or unconscious bias, but a certain layer of that is really peeled away, when you know that somebody has been through a significant, relatable experience to what you've been through and it really opens your mind to getting to know that person and getting to know their experiences. I think it's just been a really, it's been an interesting experience. Another interesting side of it. One that I, I personally really appreciate.
Yeah, I think it speaks to the, the, like game-changing perspective. I mean, I remember growing up, you know, we have peers or classmates with disabilities and I remember seeing their parents and thinking, "Oh, that, that mom has always been, or was supposed to be, or is that's...
It was the only version of her that you ever knew.
That I that I ever saw. And I think that static assumption that's made, that stuck with me as I grew up and went through adolescence, and even into early adulthood. Where you kind of see parents who have kids with, with any sort of additional atypical lives, and you almost just assume that it was just part of the original assignment. For me, that was so I think that was maybe something that made it really hard for me at first, to even just accept that this was going to be a permanent thing in Luke's life. And so it was almost like, "Wait, No! None of my life has been preparing for this. And I have absolutely no idea how to handle, you know, a diagnosis like this..." or, you know, as we were going through the genetic journey, and discovering that there was so little to actually know about it, that was even more terrifying for me. And it was just almost like this unraveling that happened. And I think with that came a lot of personal growth. And a lot of eye-opening perspective changes, just like you were saying, Nichole, where it's like you're forced to just kind of strip away some of those guarded presumptions that you have about people in these circumstances because it protects you from it. And it wasn't malicious. It was just like, "Oh, what a wonderful family that's so nice that those parents are doing these wonderful things for their kids." And I would tie a bow on it. And I would just throw it away from my daily life, right? And so then now to be in this place, where it's like, "Oh, my gosh, those parents are people. They had a past, they have a future they are, you know, and so does their kid. And how...", you know, I don't know. I just look back and (sigh) I don't know how I would have gained that perspective without going through this or without being, have been close to someone who has gone through it. But it certainly has changed a lot about my own outlook about other people and other parents, and myself as a parent, too.
When you start sharing some of these stories or having these experiences that it's like, "Oh, okay, oh, well, that was unexpected to happen to me. But okay, well, here's other people that happened to." But then you start talking to people about your own expense experiences, and then you find that everybody has their nuanced experiences, and there's a lot that you don't know that's going on with people. Even if you're not having the same experience as someone, it ends up being very relatable.
Yeah, it really does it, it individualizes the human experience, and then kind of takes away the "they" component where it's like, "Oh, that's just, you know, some group off on the fringes," and it's like, "Oh, actually, my co-workers going through something like that, or my...", you know, it just, it does, it connects everyone. Well, and really, like you said, Nichole, even if it's not the same, the similar experience can be very, very connecting. I was just thinking just now I don't think Luke or Liam, I don't think they share any of the same like specific diagnoses.