Atypical Truth

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 AmiinaEpisode Cover Art by Eric McJiltonAtypical Truth design by Kendall Bell

Kevin Newbern details his experience as a rare disease & heart dad — an intimate look into life, love, and disability parenting. 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 rooted in the profound love for your child. It's that same love that helps us to persevere on. 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 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.

Kristyn Newbern shares her perspective on the adventure of being a season-long podcast guest-host on Atypical Truth. 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

Rare Disease Grandparent, Dr. Donna Cartwright, details what it is like to watch your child enter the world of disability parenting. This episode focuses on the support and perspective of grandparents. Dr. Donna Carthwright shares 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. 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

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. 

Kristyn Newbern provides a storied dedication to those special people who exist beyond the microphone. 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

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.

Inclusive parenting, insightful advice for friends of parents facing a different parenting journey, and a heartfelt thanks to the friends who never stop showing up. Kristyn Newbern 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, which I think will resonate with many parents of children with rare diseases and disabilities. 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 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.

Kristyn Newbern and Jen Schuerman, physical therapist, discuss the importance of PT for children with 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode 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, 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. --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.

Medical moms Kristyn Newbern and Nichole Rosenberger discuss hard but necessary conversations 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). 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

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 AmiinaEpisode Cover Art by Eric McJilton

Genetics, reproduction, fertility, and the role of IVF with preimplantation genetic testing (PGT) as a reproductive option with Kristyn Newbern and genetics counselor Marisa Andrews. Genetics counselor Marisa Andrews joins Kristyn to discuss IVF with PGT, which is just one of many family planning options 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 and the different types of genetic results. 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 Fertilization (IVF) Genetic Testing 101 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 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 CounselorsPreimplantation Genetic Testing (PGT)In vitro Fertilizat ion (IVF)Genetic Testing 101 Into and Outro Music by AmiinaEpisode 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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

Kristyn Newbern and Nichole Rosenberger are two moms of children with rare diseases finding comfort in the permission to get uncomfortable. 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

Two versions of the same story, a story about surgery day. Told from the perspectives of a mother, Kristyn Newber, and a child, Erica Stearns (an adult who had many surgeries throughout her childhood). Unlike the conversations that usually take place on this show, today, you will hear two versions of the same story. A story about surgery day. Kristyn and Erica narrate their time spent preparing for, undergoing, and recovering from high-risk operations through the perspectives of both a mother and a child. 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

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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

Life within and beyond the hospital walls with Pediatric Cardiologist Dr. Chetana Reddy at Cardinal Glennon Children's Hospital. 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

A bit of self-disclosure and a reminder for the busybodies in the world. 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

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

Katie is 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. One day, Katie decided to do a hashtag search for her rare condition. Expecting to find only a few posts about her disease, Katie was surprised to find an entire community of caregivers sharing 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

Once a medical mom, always a medical mom. Kristyn Newbern shares her experience raising two brothers with different abilities and personalities. 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 compelling advice for any parent 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

Kristyn Newbern shares the rarely talked about responsibilities of raising a child with a rare diagnosis and disabilities: trust in strangers, vulnerability with others, learning to let go of control, and helping them to write their own stories. In this episode, we 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 her concerns that come with parenting a child whose medical condition isn't obvious, 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, we have the pleasure of hearing 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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.orgInto and Outro Music by AmiinaEpisode 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. --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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.

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/atypicaltruth/support

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 categoryBe sure to visit our Website or Shop for Atypical Truth swag!Music by amiinaCover-art by Kendall BellTranscription provided HEREResearch 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 categoryFor merch and resources, visit our Website or LinktreeMusic by amiinaCover-art by Kendall Bell @littlebellinTranscription provided HEREResearch 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. 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. 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. 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 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. 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 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.Be sure to visit our SHOP for Atypical Truth swag!Music by amiinaCover-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.VOTE HERE for "Disability" to be a podcast categoryBe sure to visit our Website or Shop for Atypical Truth swag!Music by amiinaCover-art by Kendall BellTranscription provided HEREResearch 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.VOTE HERE for "Disability" to be a podcast categoryBe sure to visit our Website or Shop for Atypical Truth swag!Music by amiinaCover-art by Kendall BellTranscription provided HEREResearch 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.VOTE HERE for "Disability" to be a podcast categoryBe sure to visit our Website or Shop for Atypical Truth swag!Music by amiinaCover-art by Kendall BellTranscription provided HEREResearch can be found HERE