The Power of Sharing and Listening to the Stories of Others
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
Kristyn shares her perspective on the adventure of being our first season-long podcast guest-host.
Reflecting on how this experience has shaped her, Kristyn provides insight on what it is like to take the reins of your story and share it with others
Welcome back to the final episodes in season two of Atypical Truth .
(Puppy whines in background) Aw, Arlo. I'm sad about it too. I'm your host, Erica Jolene. And I guess we have a guest in the background in the form of a very needy Corgi. So as we approach the end of this season, I asked Kristyn to have a conversation with me, reflecting on her experience as our guest host. For those of you who have just joined us for season two of Atypical Truth. You may not know that this podcast was developed as a part of my honors thesis research. I began working on it about two years ago. And the first official episode of this podcast launched in March of 2021. I believe. Even though this started as a research project, it was something that I had the intention of sustaining for as long as possible. But I knew that I couldn't do that alone. And frankly, I was emotionally exhausted from sharing my own story. as fate would have it, I met Kristyn, just as I was wrapping up my interviews for the first season. And this is when I began contemplating how this podcast would evolve into helping others to share their stories on this platform.
Kristyn and I had no idea what the next year would hold what would become of his collaboration. Nor did we have any clue as to how it wouldn't land with all of you fine listeners. But my goodness, I am so thankful that Kristyn was eager to join me at the helm of this adventure. And I'm incredibly grateful that you have all joined along with us.
And, my friends, it has been one heck of a year. Honestly, I'm so impressed that Kristyn and I have managed to make this podcast a reality through what has felt like very turbulent times that this past year has brought. Times when our kids have struggled through illness, and unexpected hospitalizations that led to new and unexpected diagnoses. We still somehow managed to carve out time, be it late at night, or on a weekend to sit down and have a podcast conversation. Which of course was right before we face a new day of celebrating big milestones like new jobs, new schools, classrooms, teachers and friends. During this season, I have experienced personal loss. And I've mourn the loss of many close friends that we've made in our rare disease community. We've experienced anxiety and grief over the loss of medical professionals who were critical players in the care and well being of our children. These new chapters in their lives, be it retirement or outside promotion, they've given us the opportunity to meet many new impressive people who in my opinion have entered our lives, maybe right on cue, without us even realizing it. This juxtaposition of highs and lows, grief and joy, anxiety and calm sickness and health - This is the nature of life. Not just ours. But everyone really.
I can only speak for myself when I say that there were moments when I had no idea how I would manage to get an episode produced on time. There were many weeks when the podcast felt very, very low on my list of priorities. Moments when we had to cancel interviews, rearrange episode schedules, and even delay publishing by a week. And yes, I am Loki referring to the most recent delay in our episode release. But I tell you what, any ounce of stress that I have felt In the need to produce the show, it completely fades when I listen to Kristyn, as she shares her story, or when she had a conversation with a guest when things got real and vulnerable, when everyone involved, didn't shy away from talking about the hard stuff, and there I am in the background, just getting swept up in the feeling of having others to relate to. And really, that's what I hope this podcast is providing to others. That's the dream that keeps this whole thing going is that it's relatable to others, precisely when they need it the most. knowing just how important this supportive storytelling work has been for me, I wanted to gain perspective on what this experience has been like for Kristyn. Thankfully, she was eager to join me for a conversation about her life for the last year as a podcast guest host.
When I think about my feelings on this project, I'd be remiss not to talk about how this opportunity even came about. That all started, I want to say it was early 2021 felt like winter, I think on one of the regularly scheduled monthly zoom calls for Cardinal Glennon’s patient and family advisory council. It was your first meeting. And so therefore you were being introduced as a new member. And not that I don't pay the closest of attention to every single one of those meetings. But if I wasn't paying attention, I got locked in hearing your story. And it's truly an incredible one, Erica, hearing about your childhood with so many surgeries and uncertainties growing up with a trach. And now here you are using your voice your talents to tell the world your story. It's poetic.
Oh, oh my goodness.
It is I was I was blown away. And I thought maybe I could reach out to you and you know, help you share your podcast. I don't have a gigantic network. But I could help that message reach people that it wouldn't have otherwise. And so I remember being a little bit nervous when I first I think I messaged you on that Zoom call or something. And sent you my I was like, this lady is gonna think I am nuts. I'm just like, hi, I think you're fascinating. Can we can you be my friends are like, I just want to know you more or see how I can possibly help you in your mission. And so. So I'm very fortunate that you took the chance on getting to know me a little bit better.
I remember when we started talking and just learning more about the podcast itself and your ideas for it. Because that was before the first season aired, right? And so you were you were still planning out the rest of the episodes and interviews. And I remember us talking and you bringing the idea that maybe I could be a guest on one of the episodes for your season. And I was so excited. I was like, wow, which part of this wild story that my family has been living? Could I share on this platform. And we started going back and forth and throwing out ideas like maybe my episode would be about open heart surgery, or maybe it would be about being a parent and searching for a genetic diagnosis. Maybe it would be about learning that diagnosis and being relieved to figure it out, but also kind of defeated in learning just how new and unknown it really is. Or maybe we would even start talking about the research and the path that led to IVF with genetic testing so that we could grow our family. So we started talking about okay, how in the world can we smoosh all of these topics together into one episode.
And you can't right? Like, that was the ultimate lesson we learned...and I have you to thank for that because, you know, I think by the time that you came into my orbit, or where I came into your orbit, however that manifested...
...they did. I think I was figuring out, like what I wanted from the podcast. And I realized, in this process, I was having these conversations with my guests during my season. And it was so cathartic it was. So it was really amazing and profound to have these conversations with these people, to intentionally set aside time to just not be talking about necessarily my kids and their health conditions, but moreso, about the people themselves, who are helping us manage those things, and just learn about them and their life story. And that really appealed to me. And I thought, I don't know enough people to continue doing this, eventually, this will expire, because I only have so many people in my tribe. But these conversations are important. You entered my world, as we were talking about different topics that you could include in my season, I just recognize that you like myself had this, what feels like a novel of experiences that could not be condensed into one hour segment, you know, like, there was just such a rich wealth of potential, and conversations, and you met me with this enthusiasm and energy and trust, which I have to say, Kristyn, more than anything, I appreciate that you've trusted me throughout this entire process. Yeah, I was just it was so exciting to have you be excited about the same thing. Because sometimes, you know, I'm a nerd, and I'm used to like nerding out on things privately on my own. So when you meet someone who was like, I kind of want to nerd out on that thing, too. It's the best feeling in the world. So thank you for nerding out with me for the last year. I don't know what I would have done without you.
I couldn't agree more on all accounts, it has been. Yes, you have been my person it was like, I think that's what that's I mean, I am admittedly rather trusting and energetic and, you know, laugh when I'm nervous and things like that. But getting to know you and being able to text you if something like drastic is happening in the world or in you know, our own lives or something. And just like having that instant connection, even though you live in a different state, you have an entirely different story to tell and different experiences and all these things, but perspective and the connection and all of these things. I mean, it was like instant trust and continues and only builds. So, you know, I think about if you were someone else, or if you know the timing was different, or if I you know, didn't take a leap of faith or, you know, any of these factors could have contributed to this not working out or you know, being a non starter in the first place. So, it's really been, it's been such a, I mean, it's been a once in a lifetime opportunity for me to be able to do this same
just as it's been a once in a lifetime opportunity for you, I feel the same. I feel an extreme amount of privilege to be able to have this time with you to get to know your family to get to know Luke and love him without ever actually meeting him in person yet. And yet, I feel like I know so much about him. And I get to like cheer him on. And your entire family who I've obviously fallen in love with. It's it's exactly why we did this right. It was about building a community and connecting to others. So
it's so true. It's so true.
I mean, I guess when we talk about like feelings, or like, how they've changed what was different from onset to now. I was super nervous. I mean, when you threw the idea out of me having an entire season I was nervous, like thinking about, okay, who's my lineup going to be and we're all we want a mix of professional and personal and we want, you know, friends and family but we also want like the hardest, you know, kind of like hard to access or at least perceived hard to access, you know, specialists and doctors and everything. So putting that list together was tough.
And by the way, make sure to add a layer of vulnerable or intimate conversations with those people.
no pressure Right,
exactly. Well, and I was nervous, like, maybe the first one or two, I was nervous to actually have the conversation just because this is new. But really, it became more, I was just nervous to get it right. I was like, I'll never have this again. You know, so really, it's this, this is the hour that you have with this person to be vulnerable and to talk openly, and to share and, and, and listen and absorb what they have to say. And then it will never exist again. So, so that weight hit pretty heavy on me. And I wanted to make sure that I got it right, and that I made them feel right in it, you know, that, that it came across with the genuineness, the the authenticity that I truly have, and believing in this project and in its mission. So that was really like my feelings going into it was more like nervous and super excited. And now, I would say that the nervousness has turned into exceptional gratitude.
I get to share the perspective of this wild and very unexpected type of parenthood, with literally anyone who wants to listen. And you weave it together so beautifully with the music and the narratives. And there's an entire story arc at the end. I mean, seriously, if you're listening to these episodes, and you're like, wow, Kristyn has an incredible first take on all of these conversations. No, no, Erica helps me so much. And helping me to, you know, come out on the other side with these published episodes. And they sound fantastic. And I assure you that they sound like a rough draft when we first record. So thank you for helping me to sound put together. Oh, my goodness, at the end of all of that, when we hear the final episode, and it's it's posted, it's published, all have these memories, these feelings and experiences. They're encapsulated forever. I am overwhelmed with gratitude for my guest, for taking the time to share with me, for you, who has put it together so incredibly. And for every single person who listens. Most of all, I am so grateful that Luke and Ozzy will have these recordings when they're ready, but also forever. I hope these episodes outlive me. And they can share them with whoever is important in their lives.
Well, that's my goal. No pressure or anything,
no pressure, no pressure at all.
I just have to say when you talk about feeling nervous about not getting it, right. That's how I feel every time I press the publish button. At the end of the day, I just want this to be perfect for you, for your family, or Luke, for Oz.
What impact on these conversations had on you and your family? Has it affected your relationship with your guests? Has it changed your perspective in any way? I know that after I did my season, I remember feeling like there was a little bit of a change in the relationship dynamic between me and the providers that had shared time with me and all their colleagues who had heard about this. So I'm curious to know if you've experienced that too.
It is entirely true that whenever you have a really purposeful or meaningful conversation with someone who you're typically having day to day or logistical conversations or pointed, specific q&a type of conversations. I think it just inherently has an impact on that relationship. So you so yes, tremendous perspective change tremendous impacts for the professional guests, like doctors, specialists, therapists. Those are the relationships where I'm very used to having short blips of time during an appointment where I'm reporting on a status update or asking a question or is it okay if we're seeing this when we go home and try it at home or you know, asking about something I read In the, in a, an article somewhere or something, it's all like I'm trying to squeeze as much critical information into a very small amount of time with all these people. So there's not a lot of time for like, so how many kids do you have? Or what got you into this field or what is the rest of your day like outside of this appointment? So, I mean, and there's, there's not only not no time for that, but it's just not the nature of the relationship, you know, up until having these conversations. And I mean, I assumed that my kids, doctors had families and ambitions and like backstories, and all that, but I just never had the time to explore that with any of them. So learning the humanity behind the professionals in our lives, it's been a game changer on perspective.
Now, for the personal guests, it's almost the opposite, right? With my friends who I get to see quite often still, especially the ones that have little kids themselves. And so it just kind of blends. It's easy and convenient with our families. And then, of course, my mom, who I see quite often because she is close by and, and actually, all four grandparents are nearby, and they have a huge role that they play in the boys lives. So I have a ton of time that I'm spending with them. But really, we're not happy. Even with all of that time, we're not having these, you know, deep seated conversations, it's, it's much more day to day and logistics and schedules, or, you know, planning activities or events or anything like that. So, we're not taking the time to share the inspiration that we've had, or the gratitude that we feel for each other, all of the other things are just more convenient and easier to fill the day. So it's not like, it's not like now every time I see Lauren and Alice, we're like, okay, and now let's reflect on the gratitude that we felt last month. And, you know, it's it hasn't, you know, I don't know if that's good or bad. But I will say that when I see them at the, you know, next barbecue or when I hug my mom, as I'm dropping off the boys for playtime at Nana and Papa's. I'll always remember the kind words that we shared on this podcast, and I don't think they'll forget either.
It's almost like this experience provides the time in the place to purposefully and intentionally the title of the show speak your truth.
What would you like the listeners to know about this experience?
I want listeners to know that they are making a difference. You are making a difference. You have stories, you could share just as much as me with the people in your lives. And maybe you should, maybe we should all share just a little bit more. I was amazed at how accessible it was for me to reach each guest. And for them to take an hour to have an open conversation about a shared experience. I can't tell you what a relief it was to organize my thoughts and tell them how much of an impact they've made in my family's lives. Podcast or not, these purposeful conversations, create empathy and perspective. And I'd encourage all of us to make time for them in the midst of our day to day lives.
What impact you hope that your season will have on our listeners?
Regardless of how meaningful making this season has been, for me, the whole point of it was to connect with others. It was to offer a way to access a glimpse of what this perspective on parenting has been like, at least for one person. So to a listener, whether you are finding yourself at the very beginning of being a parent to a medically complex child, or whether you have been that parent for a lot longer than I have. Whether you have someone in your life with a similar experience, or you've never even considered that this is a life some people lead. Whether you know me personally, and this has been a way to seek answers to questions that maybe you didn't want to burden me with asking or whether you don't know me at all. You know someone whose story might resemble mine, this podcast, these conversations. They're recorded for me for all the things that I talked about before. But they're published for you. So I hope you walk away, feeling more accepted, more connected, more validated, and more loved. This life is so short, it can be cruel, and it can be wonderful. So, I think we should actively seek to support each other through the cruel and share relentlessly through the wonder. This has been my way to share with you.
Well there's nothing I can say don't follow that. Oh, just get these goosebumps off my arm.