Atypical Truth

Kristyn Newbern explains Luke’s complicated diagnosis and details her transformation into life as a complex medical mom.

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, but 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 learned and some of the beliefs or assumptions we've had to unlearn.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton

Meet Kristyn and Luke - lovers of space, music, and a very special dog named Charlotte. We will be spending an entire season traveling through the story of Kristyn and Luke’s life, but I first felt that we deserved an episode dedicated to getting to know the Newbern family.

For those of you who have been with me since season one, you will know that I like opening every conversation with a set of random personal questions. I call these questions the “humanizing questions” because they allow us to connect simply as people - complete with our unique set of likes and dislikes. 

These were initially designed to be answered rapidly, but I quickly learned that there was always a story to accompany the brief answer - and it is in that story where the real magic of connection happens.

Today, we will be spending our time learning more about the Newbern family - and the origin stories that lend to their rapid-fire answers.

Be sure to visit our Website for transcription and our Shop for Atypical Truth swag!

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 www.atypicaltruth.org. Or you can also find me at 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.

Eric McJilton designed the cover art for Season Two of Atypical Truth.

Preview what will come in Season Two with the special guest co-host, Kristyn Newbern. 

Kristyn is a fellow medical mom to her son Luke, who was born with a congenital heart defect and later diagnosed with a rare genetic disorder called Noonan Syndrome. 

Throughout this season, Kristyn shares her journey into life as a heart mom and her conversations with many people who have made a lasting impression throughout their complex medical journey. Together, we will learn more about living with Noonan Syndrome, the life of a cardiologist, “sci-fi-style” family planning options, the importance of early childhood therapy services, the beautiful evolution of friendships, the power of love, and the strength of Luke’s tribe.

Be sure to visit our Website for transcription and Shop for Atypical Truth swag!

Music by amiina

Cover art by Kendall Bell

Wrapping up the research bonus episodes, I steer away from what outside research has to offer and present the information I obtained in my own examination of utilizing a podcast for disability community-building. In this episode, I share about the intention behind asking the miracle question at the end of every episode. You will also get to hear from our listeners, as some of our audience were participants and might be curious to know how their contribution to this research was used. I have also included some important feedback for disability podcasters, some vulnerable information about myself to consider when criticizing someone’s efforts, and the ways in which this entire experience has transformed me. Getting a bit vulnerable, I share about challenges I have faced in the process of podcasting and my concerns about how those same challenges might present barriers to others. Finally, I share about the future of the podcast and the suggestions from listeners on what our community would like to hear more of.

VOTE HERE for "Disability" to be a podcast category

For merch and resources, visit our Website or Linktree

Music by amiina 

Cover-art by Kendall Bell @littlebellin

Transcription provided HERE

Research can be found HERE. 

Part Four of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Free of Judgment,” “Layered Lives,” and “Humans First, Labels Later.”  Erica shares validating data, confirming that she was not alone with her feelings of social isolation. Using current research and scholarly work, she shares about feelings amongst caregivers and the importance of physicians not only validating the experiences of caregivers, but also encouraging them to seeks out resources as a valuable member of the team. Early episodes from Season One are referenced in this episode.

VOTE HERE for "Disability" to be a podcast category

For merch and resources, visit our Website or Linktree

Music by amiina 

Cover-art by Kendall Bell @littlebellin

Transcription provided HERE

Research and References can be found HERE. A list of researchers, scholarly work, and authors referenced in this episode is provided below.

References:

Green, S. E. (2003). They are beautiful and they are ours: Swapping tales of mothering children with disabilities through interactive interviews. Journal of Loss and Trauma, 8(1), 1–13. https://doi.org/10.1080/15325020305875

Currie, G., & Szabo, J. (2018). “It is like a jungle gym, and everything is under construction”: The parent’s perspective of caring for a child with a rare disease. Child: Care, Health and Development, 45(1), 96–103. https://doi.org/10.1111/cch.12628

Currie, G., & Szabo, J. (2020). Social isolation and exclusion: The parents’ experience of caring for children with rare neurodevelopmental disorders. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1-10. https://doi.org/10.1080/17482631.2020.1725362

Rupert, D. J., Moultrie, R. R., Read, J. G., Amoozegar, J. B., Bornkessel, A. S., O’Donoghue, A. C., & Sullivan, H. W. (2014). Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Education and Counseling, 96(3), 320–326. https://doi.org/10.1016/j.pec.2014.05.015

Part Three of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Need for Connection” and “Our Stories Matter” - Erica shares validating data, confirming that she was not alone with her feelings of social isolation. Using current research and scholarly work, she describes common and contradicting societal expectations of parenting that impact caregivers to children with a rare or undiagnosed disease. Early episodes from Season One are referenced in this episode.

VOTE HERE for "Disability" to be a podcast category

For merch and resources, visit our Website or Linktree

Music by amiina 

Cover-art by Kendall Bell @littlebellin

Transcription provided HERE

Research and References can be found HERE. A list of researchers, scholarly work, and authors referenced in this episode is provided below.

References:

Keir, A., Bamat, N., Hennebry, B., King, B., Patel, R., Wright, C., Scrivens, A., ElKhateeb, O., Mitra, S., & Roland, D. (2021). Building a community of practice through social media using the hashtag #neoEBM. PLOS ONE, 16(5), 1-8.

Stearns, E. J. (Host). (2021c, March 16). Atypical introduction [Audio podcast episode]. In Atypical Truth. 

Stearns, E. J. (Host). (2021h, June 22). Announcements (No. 11) [Audio podcast episode]. In Atypical Truth. 

Stough, L. M., Sharp, A. N., Resch, J. A., Decker, C., & Wilker, N. (2015). Barriers to the long term recovery of individuals with disabilities following disaster. Disasters, 40(3), 387–410. 

Sweet, K.S., LeBlanc, J. K., Stough, L. M., & Sweany, N. W. (2019). Community building and knowledge sharing by individuals with disabilities using social media. Journal of Computer Assisted Learning, 36(1), 1–11.

Tufekci, Z. (2018). Twitter and tear gas: The power and fragility of networked protest (Reprint ed.). Yale University Press. 

Part Two of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Atypical Motherhood” and “Rare Reality” - Erica shares the unexpected reaction to sharing her daughter’s birth story. Using current research and scholarly work, she describes common and contradicting societal expectations of parenting that impact caregivers to children with a rare or undiagnosed disease. Early episodes are referenced in this Part Two episode.

VOTE HERE for "Disability" to be a podcast category

For merch and resources, visit our Website or Linktree

Music by amiina 

Cover-art by Kendall Bell @littlebellin

Transcription provided HERE

Research and References can be found HERE. A list of researchers, scholarly work, and authors referenced in this episode is provided below.

Currie, G., & Szabo, J. (2020). Social isolation and exclusion: The parents’ experience of caring for children with rare neurodevelopmental disorders. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1-10. https://doi.org/10.1080/17482631.2020.1725362

Lin, E., Durbin, J., Guerriere, D., Volpe, T., Selick, A., Kennedy, J., Ungar, W. J., & Lero, D. S. (2018). Assessing care-giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review. Health & Social Care in the Community, 26(5), 613–634. https://doi.org/10.1111/hsc.12546

Germeni, E., Vallini, I., Bianchetti, M. G., & Schulz, P. J. (2018). Reconstructing normality following the diagnosis of a childhood chronic disease: Does “rare” make a difference? European Journal of Pediatrics, 177(4), 489–495. https://doi.org/10.1007/s00431-017-3085-7

Over the next few weeks, prior to the release of Season Two, I will be releasing some bonus episodes for you. From the top, I just want to say that these may not be everyone’s cup of tea. However, if you are a caregiver to, or an individual with a rare disease, disabilities, or complex medical conditions, you may find these episodes to be very comforting and informative. I also feel that these episodes will be extremely relevant to any and all professionals who work with the community of people with disabilities - including my fellow disability-podcasting peers.

In line with today’s bonus episode, I would like to share a little more about academic Erica turned to podcast Erica. I was a first-generation, non-traditional, undergraduate student - meaning I felt very old when I finally had the chance to complete my college career in psychology at Southern Illinois University Carbondale. I had the hard-earned privilege of being an honors student and last year I was honored to have the chance to complete an undergraduate honors thesis. This was a unique opportunity in which I was encouraged to take many creative liberties, which I feel I absolutely did. I was responsible for creating and conducting the research myself under the guidance of a thesis advisor and I have to say that I struck gold the day Dr. Sandy Pensoneau-Conway excitedly agreed to be my thesis advisor and has now become a lifelong mentor, I hope she’s ok with that.

VOTE HERE for "Disability" to be a podcast category

For merch and resources, visit our Website or Linktree

Music by amiina   Cover-art by Kendall Bell @littlebellin

Transcription provided HERE

Research and References can be found HERE. A list of scholars and authors referenced in this episode is provided below.

Cunsolo, M. (2019, June 14). Podcasts vs traditional media: What’s the difference? Podcast.Co. https://www.podcast.co/inspire/podcasts-vs-traditional-media

Ellis, C., Kiesinger, C. E. & Tillmann-Healy, L. M. (1997). Interactive interviewing: Talking about emotional experience. In Rosanna Hertz (Ed.), Reflexivity and voice (pp. 119-149). Sage.

Langellier, K. M. (1989). Personal narratives: Perspectives on theory and research. Text & Performance Quarterly, 9(4), 243–276. 

Podcast. (2021, June 21). In Wikipedia. https://en.wikipedia.org/wiki/Podcast

Season One Finale - a reflection on the experience and plans for the future of Atypical Truth.

Be sure to visit our Website for transcription and Shop for Atypical Truth swag!

Music by amiina

Cover art by Kendall Bell