Atypical Truth: Recent Episodes
Atypical Truth
Humans are storytelling beings. Atypical Truth amplifies the stories of people who identify with the community of rare diseases, disabilities, and complex medical conditions. Not only will you hear from our peers in this community, but you will also hear stories from family, friends, and professionals who advocate with us. Each season features a new guest co-host who shares with us a glimpse into their lives joined by people and professionals within their tribe.
Kristyn Newbern shares her final thoughts, thanks, and hopes for her season's impact on others.
Kristyn delivers an epic mic-drop in this final episode of Season Two. As you might expect, Kristyn departs this season with absolutely stunning grace as she eloquently details her hesitations and motivations for publicly sharing her story.
Join us at the Cardinal Glennon Children's Foundation Sun Run next Sunday, October 16th. There is still plenty of time to sign up to join Luke's SkyWalkers Team!
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
--- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support
Kristyn delivers an epic mic-drop in this final episode of Season Two. As you might expect, Kristyn departs this season with absolute stunning grace as she eloquently details her hesitations and motivations for sharing her story so publicly.
Join us at the Cardinal Glennon Children's Foundation Sun Run next Sunday, October 16th. There is still plenty of time to sign up to join Luke's SkyWalkers Team!
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Atypical Truth design by Kendall Bell
Kristyn is joined by her loving husband and proud father of Luke and Ozzie, Mr. Kevin Newbern. It is incredibly rare to see or hear the father’s perspective on life as a rare disease parent. Kevin shares his story, thoughts, and feelings on life as a Heart Dad. As they explain throughout this episode, becoming a parent to a child with a life-threatening health condition transforms you, and that transformation isn’t always easy. It is full of fear, sadness, discomfort, and uncertainty - all of which are rooted in the profound love for your child. It's that same love that helps us to persevere on.
Kristyn shares her perspective on the adventure of being our first season-long podcast guest-host.
If you have enjoyed this season and would like to share some words of gratitude and a story about the impact it has had on you, I encourage you to send us a recording. HERE you will find a link that will allow you to record a short message. I would like to share these messages in the approaching season finale, so I ask that you please record your message before July 30th.
This episode focuses on the support and perspective of grandparents. Dr. Donna Carthwright shares about the love and pride she feels for her daughter and the family that Kristyn and Kevin have fought hard to build. Prepare to fall in love with this mother/daughter duo.
If you have enjoyed this season and would like to share some words of gratitude and a story about the impact it has had on you, I encourage you to send us a recording. HERE you will find a link that will allow you to record a short message. I would like to share these messages in the approaching season finale, so I ask that you please record your message before July 1st.
A storied dedication to those special people in our lives who exist beyond the microphone, those who have shown up in more ways than we can count, the people we have yet to interview but whose conversations and connections mean the world to us.
If you have enjoyed this season and would like to share some words of gratitude and a story about the impact it has had on you, I encourage you to send us a recording. HERE you will find a link that will allow you record a short message. I would like to share these messages in the approaching season finale, so I ask that you please record your message before July 1st.
Kristyn is joined by two close friends, Alice and Lauren, who share what it was like to support their friends through a difficult prognosis. They discuss how this experience has shaped their approach to inclusive parenting and the challenges they anticipate facing as their children continue to grow up together. They also provide some insightful advice to other friends and family members who may find themselves trying to show support from the sidelines. And finally, Kristyn shares a heartfelt letter to her friends, one that I think will resonate with many parents of children with rare diseases and disabilities.
Pediatric therapists become lifelines in the lives of parents and caregivers, teaching them how to empower their children with disabilities. If you are someone who has had the experience of interacting with an early childhood therapist, you likely already know just how special these people are. Today’s episode will remind you of the hard work these professionals have signed up for.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Today’s episode is dedicated to honoring the beautiful life of our little friend, Josie Fernandez.
Josie’s life was filled with so much love. Love for her family, love for her friends, and so much love for her four-legged friends. To honor all the love that she brought into this world, I put together a montage of love for our little Rapunzel.
Our hearts are with Josie’s family as they navigate the unimaginable. Please keep this family in your prayers. For those who would like to help them through this challenging time, I will be sure to add a link to their donation page as soon as it is ready.
You can listen to Josie’s full story in all of its beauty in the episode “Love Needs No Words” from Season One.
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).
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Kristyn is joined by genetics counselor, Marisa Andrews, to discuss IVF with PGT, which is just one of many family planning options that couples have if there's a known risk of passing down a severe or life-threatening genetic disease. Marisa helps to explain the process you might experience on this journey. First, she touches on genetic testing, the different types of genetic results, and then she explains the process of pre-implantation genetic testing or PGT, and in vitro fertilization, also called IVF.
Helpful Links:
National Society of Genetic Counselors
Preimplantation Genetic Testing (PGT)
In vitro Fertilizat ion (IVF)
Genetic Testing 101
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
This is the story of a very rare friendship. A friendship that has traveled familiar scary paths, faced many of the same medical challenges, had the same hard conversations, trusted the same surgeons with the lives of their children, waited in the same family room, stared at the same hospital walls, listened to the same alarms of beeping machines and blaring monitors. All this, while wondering how to move forward with all that they both came to know. This is the story of Kristyn and Nichole.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Unlike the conversations that usually take place on this show, today, you are going to hear two versions of the same story. A story about surgery day. Through the perspectives of both a mother and a child, Kristyn and Erica narrate their time spent preparing for, undergoing, and recovering from high-risk operations.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Dr. Reddy takes us through a day in her heels as she travels throughout Cardinal Glennon Children's Hospital helping her Pediatric Cardiology patients. In this episode, we get to learn more about the many layers of communication that take place before the doctor ever appears in your room. We also get to learn more about the importance of hearing a patient's story as opposed to reading it in a medical chart - two very different approaches to learning about the medical history, both equal in importance. Dr. Reddy shares with us the unexpected joys she has found in her role in helping older pediatric patients and her hopes for the future of medicine.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Hi there, it's Erica with the Atypical Truth podcast. I am interrupting our regularly scheduled program this week to bring to you a public service announcement of sorts.
I don’t know about y’all, but I am tired.
Here is a bit of self-disclosure that I have hesitated being open about…
Just after the exciting launch of season 2, our kids became sick and they have struggled to recover ever since. Despite having so much of this season already recorded and ready to go for me to edit and produce, it has been a struggle to balance everything while also taking care of myself. And taking care of myself is honestly something I have not been doing a very good job of. I believe my body, my heart, and my mind have reached a non-negotiable breaking point.
And with that said, I have decided to take a short pause from releasing episodes.
Perhaps what I am about to say is really just meant for me, something that I can refer back to and replay when I need the reminder, but maybe there is also someone else out there who needs this reminder too.
So here are my words of advice to everyone, but especially myself.
Take care of yourself.
Don’t be afraid to put yourself and your family first.
Everything that is worthwhile will be there when you return.
You don’t get these moments back somewhere down the road.
These moments are happening now.
So listen to your body when it says - enough is enough.
Don’t be afraid to rest. Take the break. Sleep in longer than usual. Drink plenty of water. Dance. Listen to music that makes you feel nostalgic. Or binge that show that everyone is talking about. You do you, period.
Ok, my public service rant is over and I hope that helps beyond just myself.
We have some very special episodes lined up for you, so please be patient as I try to rest and recover. Meanwhile, no matter how you manifest love into the world - I ask that you make a point to send love and spread kindness to one another right now. I think the world, in general, just needs like one giant warm hug. Be that hug.
Goodness, I sound really cheesy. Sorry, I am just feeling it right now.
Reflecting on last week's episode with Katie Palmer, in this Afterthoughts Episode, Kristyn and Erica spent an evening discussing the power of connecting through hearing a person's story, the lack of disability representation in our society, and how certain privileges influence all these themes - even in the rare disease community.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
One day, Katie decided to do a hashtag search of her rare condition. Expecting to find only a few posts about the disease she lives with, Katie was surprised to find an entire community of caregivers sharing about their experiences.
In hopes of providing parents with a new outlook on their child’s condition, Katie began to share her adult perspective of growing up with Noonan Syndrome. Fast forward two years later and she is helping families from all over the world.
Katie is now an international family and child advocate for those impacted by Noonan Syndrome. Katie touches on her experience of growing up with a rare disease and how that has inspired her to help families navigate a rare diagnosis. Katie answers questions from members of the Noonan Syndrome Facebook group and we chat a bit about the responsibility that comes with sharing our story in hopes of helping others.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
Growing a family does not look the same for everyone. Kristyn 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.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
In this episode, we get to hear about who Luke is today and how Kristyn is navigating parenthood, in a world that isn't always as inclusive as it should be. Kristyn shares about her concerns that come with parenting a child whose medical condition isn't very visible, along with both the internal and external challenges that come with deciding on how to voice those concerns. We discuss the fears that come with relinquishing the care of our children in the trust and new professionals who enter their lives. And I share a bit about how we as parents are modeling for our children how to interact with society, which then influences how they choose to introduce themselves, to their peers and the rest of the world. And just like in previous episodes, once again, we have the pleasure of being able to hear from Luke as well.
Transcription and Merch can be found at www.atypicaltruth.org
Into and Outro Music by Amiina
Episode Cover Art by Eric McJilton
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.
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.
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 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.
Kristyn is a fellow medical mom to her son Luke, 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 the conversations she had 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.
Wrapping up the research bonus episodes, I steer away from what outside research has to offer and present the information I obtained in my examination of utilizing a podcast for disability community-building. I detail the intention behind asking the miracle question at the end of every episode in this episode. You will also hear from our listeners, as some of our audience were participants and might be curious to listen to their contribution to this research. I have also included some vital feedback for disability podcasters, some vulnerable information about myself to consider when criticizing the efforts of others, and how 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.
VOTE HERE for "Disability" to be a podcast category
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Music by amiina
Cover-art by Kendall Bell
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 the feelings amongst caregivers and the importance of physicians not only validating the experiences of caregivers but also encouraging them to seek out resources as valuable members 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.
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.
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.
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.
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.
VOTEHERE 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.
Support this podcast: https://anchor.fm/atypicaltruth/support
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.
VOTEHERE 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
Support this podcast: https://anchor.fm/atypicaltruth/support
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.
VOTEHERE 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
Support this podcast: https://anchor.fm/atypicaltruth/support
The finale of season one.
Please consider voting to help petition for Disability to be a category of its own. By clicking HERE, you will be helping to support shows like this to be more accessible and reachable to those within the disabled community who are searching them out.
Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
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Music by amiina
Cover-art by Kendall Bell
This is a special Afterthoughts Outtakes episode with my husband, Randy Stearns. For time’s sake, there were some really great clips that just didn’t make the cut in last week’s episode. Packaged up nicely into this episode, we reminisce about how we met and how silly we were to think that everything was going to be so easy. Randy shares more about his childhood, his career in veterinary medicine, and how these things intertwine in unexpected ways. We talk about the surprise blessing that came from sharing our home with so many professionals who were once strangers but soon came to feel like family. Randy reveals his reluctance to join the social media support groups I found comfort in, instead, he provides insight into what support looks like for him amongst his friends and the friendships we formed at the start of our journey.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
My opinion of this guest is really very biased because this guest is rather special to me. My husband, Randy, joins me on this episode to share his perspective of life in the shoes of a father, caregiver, and "dadvocate." We often hear a mother's perspective when it comes to these topics, so it was nice to hear Randy elaborate on his experience, his struggles, the things that have helped him cope, the way we have changed, what has brought him comfort, and his hopes for the future.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
To honor this past week’s theme of “Unexpected Healing” I thought I would share with you about the unexpected healing I have experienced thanks to this podcast. In this episode, I share with you two sections of my thesis, two stories that exemplify this process of healing I have experienced. These two stories offer you two very different personal experiences, one representing my entry into this life as a medical mom and one which details where I have landed and where I want to go.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
I am excited and honored to have Dr. Tanios back for another episode. Dr. Tanois is a mother of four, a wife, a daughter, and a sister to many. She is a giver. She is someone who thrives on bringing joy to others and she does this all while working through her own struggles, hardships, and victories. This episode is titled “Unexpected Healing” for a reason. In this episode, we both share how we experienced healing in unexpected ways. For myself, I found healing through the birth of my second child, but it was for opposite reasons than what I had assumed I would experience healing. For Dr. Tanios, she found healing through a scary and unexpected diagnosis.
In the episode, you will hear more about this and the support she found within her own community. I finally got to ask her about the great lengths she went to when she found out that we were sitting in the NICU with Caratacus, fearful that we might never be able to take him home. She tells us more about the role her children play in being a part of her team, and she provides us all with some encouraging and extremely helpful advice when it comes to caring for our medically complex kids, but also caring for ourselves.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
In this Afterthoughts episode, I spend a lot of time sharing more personal details about myself, my struggles, and my childhood experiences. In this episode, Bridget (@bridget.grows) and I discuss at length about our struggles with mental health, my feelings of failure surrounding mental health treatment, and our lack of access to mental health treatment in our rural community.
Neither Bridget nor myself are mental health professionals, we are sharing openly about our own opinions and experiences which may not reflect the opinions and experiences of many others - and that should be okay. We deserve a safe space to discuss these issues that impact us because there might be another person out there who is feeling the same way and I want them to know that they are not alone. So this may not be relevant to everyone, but I do hope it is helpful to someone.
VOTE HERE for "Disability" to be a podcast category
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
I am so excited to introduce the world to my gal-pal, my expert-friend, my sounding-board, Bridget Ryan. We are both lovers of snail mail, handmade tokens of love, evenings spent outside with the company of quality conversations, and moody music. We also differ in so many ways, which has made for a friendship that inspires growth from each of us. I know she has a wealth of knowledge in areas that I lack in, and vice versa. We seek each other's knowledge and insight and invite one another in without judgment.
Bridget (@bridget.grows) has transformed her gorgeous property into a garden oasis where she has tediously been working the land through the practice of natural farming methods. She is always outside, tending her plants, harvesting the rewards, working the soil, and plotting new spots to start more garden beds at Orchard Hill Gardens. She has long been cultivating her herbalist skills and she recently launched her line of tinctures, salves, oils, and more. If you reside in the Southern Illinois region, you can find her products at the Muddy Roots Collective plant store in Murphysboro, IL.
I have always felt so fortunate to have many high-caliber friendships like the one I have with Bridget. I have long been inspired and in awe of her willingness to get vulnerable and openly explore hard topics. She has always done this beautifully and tactfully. I think it was one of her first characteristics of her that I fell in love with. And when I thought about wanting to interview a friend, it made sense that I invited her because we had the unique experience of being first-time moms together, around the same time.
Bridget became pregnant with her daughter Evelyn when I was about four months along with Margot - and by proxy, we became pregnancy pals. It was exciting to share with someone about the things we were experiencing as first-time moms.
In this episode, I asked her a variety of questions that we just never really touched on before. She shares with us what it was like from her perspective to witness her friend experienced a traumatic birth experience and then become a caregiver to a child with disabilities and medical complexities, while also working through her own fears while pregnant. We share about how to show and be supportive when friends are going through really difficult times, but we also share about how we each would have handled it very differently had it not been for timing and life experience. We also discuss how she has navigated the process of unlearning ableism while raising her daughter to have a more inclusive understanding of the world and the people who inhabit it.
This recording actually took place during the early spring, and so many things have changed, specifically us being able to see one another again thanks to being fully vaccinated. We both agreed that we wanted to revisit our conversation about friendship, ableism, and mental health in next week's Afterthoughts episode.
VOTE HERE for "Disability" to be a podcast category
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
In today's Afterthoughts session, we will once again be hearing from our beloved home health Nurse Kaylee as she and I revisit subjects that we kind of glossed over, subjects that are pretty personal and often very difficult to navigate. Kaylee was one of the first people I interviewed, long before the podcast had even released a single episode. After hearing the other guests on my show, listening to her own episode, and then after some personal conversations with her family; she expressed her desire to revisit some of these topics in this afterthoughts session because she felt like she was being too careful, too gentle, and not quite as bold and brave as she wanted to be in sharing her Atypical Truth.I also refer to my experience in sharing a complicated aspect of my own life as a guest on my friend Madeline’s rare disease podcast called The Rare Life which also aired last week. So if you have not yet listened to those episodes, I would highly encourage you to do that. They both contain a lot of details that Kaylee and I touch on in this Afterthoughts session.
There are a lot of sensitive subjects that we do a deep dive into today, but again, that is the point of this show - so please listen with an open mind and an open heart - and enjoy!
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
In this week’s episode we hear from our loveable home-health nurse, Kaylee. As Kaylee describes, her experience living an Atypical Life started at a very young age when her baby brother developed a seizure disorder. She shares with us about her experience navigating this as a proud big sister and how her natural tendency to care for her siblings led her into nursing and then into our home.
Kaylee was one of the first people I interviewed, long before the podcast had even released a single episode. She was delighted to join me but also very nervous. After hearing the other guests on my show, listening to the preview of her own episode, and then after some personal conversations with her family, she expressed her desire to revisit some of these topics in next week’s afterthoughts episode because she felt like she was being too careful, too gentle, and not quite as bold and brave as she wanted to be in sharing her Atypical Truth.
VOTE HERE for "Disability" to be a podcast category
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
This week I will be doing things a little bit differently because I have a lot of announcements that I’d like to share with everyone - some changes and some exciting news for the future of Atypical Truth. Some of you may know this podcast started as a component of a thesis research project that I’m doing. It was my plan from the very beginning to continue to sustain this podcast after my research was complete and I had some evolving ideas on how that would look like. This episode is dedicated to sharing more about what future seasons of Atypical Truth will look and sound like. Podcasts mentioned in this episode: This American Life, My Favorite Murder, This is Love & Criminal
Music by amiina
Cover-art by Kendall Bell @littlebellin
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The last few guests we have had on Atypical Truth touched on subjects like resource disparity, advocacy, and social inequalities. I feel very passionate about these topics and I could literally talk about them all day. But it is different to talk about these subjects with my friends as opposed to on air and in such a public manner. I am not a public speaker and I constantly live with the fear of saying something wrong, but these topics are more important than my fears and I really feel like now is the time to use this platform as a way to educate and hopefully encourage everyone listening to feel as passionately about these issues as I do.
Disability, Ableism, & Racism - Podcast Recommendation: Be Antiracist with Ibram X. Kendra
Ableism - Blog Mention: Rea Strawhill @rea.strawhill
Inspiration Porn: Stella Young
Other Disability Activism accounts to follow: @neurodivergentactivist @theheumannperspective @emilyladau @disabilityreframed @talilalewis @nina_tame @livingwithclarity @chronically_ry @ibramxk @disabilityinsight
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
In this week’s episode, we hear from Dr. Sean Goretzke, who is a Pediatric Neurologist and Division Director of Child Neurology Services at Cardinal Glennon Children’s Hospital where he has a special interest in managing children with concussions and cerebral palsy. Dr. Goretzke is also an assistant professor of Pediatric Neurology in the Department of Neurology at Saint Louis University School of Medicine.
Dr. Goretzke is the father of six kids and I can say with certainty that this has greatly influenced his very relatable style when practicing medicine, which is something he shares more about in this episode. We touch on a variety of subjects ranging from navigating difficult medication decisions, comfort measures and quality of life discussions, and my personal favorite, the social inequalities that impact healthcare and medicine.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found
HERE
In this week’s Afterthoughts episode, I am joined by my friend and fellow medical mom, Shana. We first connected a little over a year ago when she offered her personal insight into the process of obtaining a ceiling track lift for our home. In Shana’s 15 years of providing in-home care to her daughter Hannah, she has fought and prevailed in a number of insurance battles, including the ceiling lift. Shana graciously offers us some extremely helpful information to ensure that families like our own are empowered to fight and prevail in similar battles with insurance/Medicaid.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
In this week’s episode, I am sharing the conversation I had with Amanda Kaufman, MSW, who previously worked closely with our family through an organization called the Division of Specialized Care for Children (DSCC). Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special needs.
DSCC was one of the first organizations to step into our lives, they were some of the first social workers who came into our home and began helping us to navigate our new norm with a medically complex child. The beginning of this experience is actually very difficult as it is occurring during a time when you, as a parent, are still learning how to cope with the acceptance of the unexpected that comes with a complex diagnosis. DSCC has played a tremendous role in helping our family to thrive. Not only have they helped to provide the means that has allowed us to care for our children at home rather than a hospital or an institution, but they have also supported us emotionally throughout this entire journey.
(UIC) Division of Specialized Care for Children https://dscc.uic.edu/
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found
HERE
This is a new version of an Afterthoughts episode. This episode includes four different outtakes of conversations that I had with Jenny Park from last week’s episode “Love Needs No Words”. This episode includes some snippets of our conversation, parts that I edited out not because they lacked in importance. These pieces range from goofy/serious, from light/heavy, and from casual/intimate. We discuss the Disney songs that get stuck in our heads, the difficult decision to pivot careers, the role our kids play in research, medicine, and science, the ability to communicate without words, and the struggle of navigating anticipatory grief. These outtakes were incredibly vulnerable, revealing, and just really stood out on their own. I will simply be separating them with fragments of music between each. If you listened to the previous episode, you will likely be able to tell what topic we were discussing which led to these outtake conversations. Jenny's account on the story and journey of Josie's life can be followed on Facebook HERE
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
Love needs no words.
Somehow those four words have perfectly captured one of the best lessons our children have taught us. I am excited to share this glimpse into the life of my fellow medical mama, Jenny Park. Jenny has a magical way of putting words to the indescribable essence of our children. I cannot think of a better way to honor Mother's Day than to share this episode with you! Jenny account on the story and journey of Josie's life can be followed on Facebook HERE
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
In this week's Afterthoughts episode, my friend and fellow medical mama, Abigail Tanner, has joined me to talk about our personal experiences with home health nursing. There is a lot of laughter and a lot of vulnerability as we both share about the awkwardness and the blessing of having the help of a home health nurse. Hearing Abby talk about her own experiences provided all the reassurance I did not know I needed. It helped me to feel normal in regards to my initial feelings, my first steps, and my expectations. More than anything, this conversation reminded me of just how lucky we are to have two wonderful nurses in our home. I can't wait for us all to learn more about Abby, her family, and her tribe; in a future season of her very own!
Abby's son Lincoln's Facebook page, Lincoln's Road, can be found HERE
Justin and Abby's business, The Board Collection, can be found HERE
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
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If you have ever been faced with the decision to consider home health nursing for a loved one, this is the episode for you! In this episode, I cover all the hard stuff with my special guest Amelia, who just happens to also be our home health nurse. Amelia has been with our family since we first opened the door to the idea of home health nursing. We discuss everything from how to navigate making that decision, what to expect in your first meeting with a nurse, what to expect when the nurse is hired, and important conversations to have with yourself, your family, and your nurse. It is so fascinating to get Amelia's perspective of what it is like to be a home health nurse for families with medically complex children. As I say in this episode, I really wish I had something like this, well, anything really, to help prepare me for this chapter of our lives. I am hopeful that this will help others who may be considering home health nursing for their own family.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
This is our first ever “afterthoughts” episode. I plan to have one of these every other week, following each interview episode. These interviews were recorded at least a month or more prior to being published, so this has given me plenty of time to marinate my thoughts and the feelings I was left with after each conversation. This also gives me an opportunity to discuss current events as they relate to the previously aired interview. Just a fair warning, these “afterthoughts” episodes might contain some adult language every now and again. It wouldn’t be authentic if I attempted to refrain completely.
In last week’s episode, Dr. Tanios spoke to the importance of establishing trust with patients and their families, and I have to say, that is what truly sets her apart for us. In previous episodes, I have spoken to my feelings of distrust, feelings guarded, and communication issues with other hospitals. In this episode, I share with you the events leading up to meeting Dr. Tanios as an example of how my trust was broken and regained, because I think I am not alone in experiencing these issues. I do feel that it is necessary to provide a trigger warning because I will be detailing traumatic events that occurred during my birthing experience and the days that followed.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
Dr. Tanios established the Complex Care Medical Program at Cardinal Glennon Children's Hospital in St. Louis, MO, where she now serves as the Medical Director for inpatient services. Dr. Tanios provides a glimpse into her life as she shares with us what led her to become a physician, her passion for working with children who have complex medical conditions, her approach to establishing trusting relationships with patients/families, and her hopes for how our society can work together to improve the lives of those faced with complex conditions. Dr. Tanios delivers a well-rounded and rarely shared perspective as a physician, a mother, and a friend.
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
Learn more about me, Erica Jolene, as I provide a glimpse into my life, my childhood, my parenthood, and my reasons for showing up to this podcasting platform now! I also share more about what to expect with future seasons, which is perhaps the part I am most excited about!
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Music by amiina
Cover-art by Kendall Bell
Transcription provided HERE
Research can be found HERE
Hello friends, welcome to Atypical Truth. I am your host Erica Jolene.
I grew up with disabilities and I am now a mother of two with complex medical conditions. From suctioning my own tracheostomy at two years old, pretending my g-tube stoma was an extra belly button, countless surgeries, and frequent hospitalizations; I am revisiting much of my childhood with my own kids, managing many of the same things with the addition of intractable malignant migrating epilepsy. There is no denying that my voice and my children are perfectly imperfect miracles, but even the lives of those blessed with miracles are messy. Here on Atypical Truth we explore the spectrum of miracles, messiness, triumphs, and hardships that pertain to the lives of those impacted by disability and complex medical needs.
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Music by amiina
Cover-art by Kendall Bell @littlebellin
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