エピソード
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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
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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
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エピソードを見逃しましたか？
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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
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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
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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
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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
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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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.
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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.
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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.
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