This Unexpected Life

When You Feel Alone: Finding God’s Provision and Presence in a Rare Diagnosis with Brianna Johnson

37 min · 9. juni 2026
episode When You Feel Alone: Finding God’s Provision and Presence in a Rare Diagnosis with Brianna Johnson cover

Description

When Brianna Johnson's son was diagnosed with Bainbridge-Ropers Syndrome, a rare genetic condition affecting only a few hundred people worldwide, her family entered a journey they never expected. Faced with uncertainty, unanswered questions, and the reality of parenting a child with complex needs, Brianna discovered that even the rarest diagnoses don't have to be walked alone. In this episode of This Unexpected Life, Brianna shares how finding community across state lines and even across oceans helped her family feel seen and supported. She opens up about raising three boys with different needs, navigating school supports and IEP meetings, learning to celebrate "inchstones" instead of just milestones, and embracing the grace to parent one day at a time. As part of our There Was Jesus series, Brianna reflects on the unexpected ways God has shown up throughout her family's journey—through teachers, doctors, friendships, and the small moments that reveal His faithfulness. If you've ever felt isolated by your child's diagnosis, discouraged by slow progress, or wondered where God is in the middle of the unknown, this conversation will remind you that you are not alone and that God's presence is often found in the people and provisions He places along the way. Eps. 51; June 9, 2026 Resources: Brianna’s Website [http://www.briannajohnson.com] Instagram [http://www.instagram.com/bcjinsights]Spotify Playlist: There Was Jesus [https://open.spotify.com/playlist/2wtRR5GLvkDViEtKUto10d?si=dzIPwyuKQcGS4ehOv9K5QQ] If you enjoyed the show, leave a 5-star review! * Get my new resource: 5 Practices For Processing Grief [https://share.hsforms.com/1WC85N-GRTCmZT0cNOmU-7Asw7e4] * Click here [https://share.hsforms.com/1lPdJHmkuS1-jwV2-6hRogAsw7e4] if you want to be a guest on the show * Carrie’s Facebook [https://www.facebook.com/carriemholtwriter] or Instagram [https://www.instagram.com/carriemholt/#] * Find me on Substack [https://substack.com/@cmholt] * My book: The Other Side of Special [https://www.amazon.com/Other-Side-Special-Navigating-Joy-Filled/dp/0800742117]  *This podcast features honest conversations with special needs parents and faith-filled guests. While I deeply value the stories and insights shared, the views and opinions expressed may not always reflect my own. Any resources listed are shared for reference, not necessarily a personal recommendation. I invite you to listen with spiritual discernment and ask the Holy Spirit to guide you in what you hold onto and set aside.

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53 episodes

episode The Autism Caregiver's Journey: Finding Jesus in Perfectionism, People-Pleasing, and Isolation with Sarah Mays artwork

The Autism Caregiver's Journey: Finding Jesus in Perfectionism, People-Pleasing, and Isolation with Sarah Mays

When Sarah Mays first heard her newborn son cry, she knew something wasn't right. What followed was a long journey of medical appointments, therapies, genetic testing, autism, ADHD, and learning how to advocate fiercely for her child. In this heartfelt episode of This Unexpected Life, Sarah shares how caregiving has been woven throughout her entire life—from caring for her younger sister as a child to raising a son with complex medical needs and autism as a single mom of five. Together, Carrie and Sarah discuss the grief that accompanies every stage of the special needs parenting journey, the church hurt many disability families experience, and the importance of finding safe people who will simply sit with you in the pain. Sarah offers powerful encouragement for caregivers struggling to see Jesus in their suffering, reminding us that God's greatest work isn't always found in deliverance—but often in His presence as He carries us through the hard things. Through honest conversations about perfectionism, people-pleasing, isolation, and grace, Sarah invites listeners to embrace the messy middle and discover that they were never meant to walk this journey alone. If you're navigating a diagnosis, caregiving, autism parenting, disability, chronic illness, or the ongoing grief that comes with raising a child with special needs, this episode will remind you that God's grace is sufficient for today Eps. 52; June 16, 2026 Resources: Spotify Playlist: There Was Jesus [https://open.spotify.com/playlist/2wtRR5GLvkDViEtKUto10d?si=dzIPwyuKQcGS4ehOv9K5QQ] If you enjoyed the show, leave a 5-star review! * Get my new resource: 5 Practices For Processing Grief [https://share.hsforms.com/1WC85N-GRTCmZT0cNOmU-7Asw7e4] * Click here [https://share.hsforms.com/1lPdJHmkuS1-jwV2-6hRogAsw7e4] if you want to be a guest on the show * Carrie’s Facebook [https://www.facebook.com/carriemholtwriter] or Instagram [https://www.instagram.com/carriemholt/#] * Find me on Substack [https://substack.com/@cmholt] * My book: The Other Side of Special [https://www.amazon.com/Other-Side-Special-Navigating-Joy-Filled/dp/0800742117]  *This podcast features honest conversations with special needs parents and faith-filled guests. While I deeply value the stories and insights shared, the views and opinions expressed may not always reflect my own. Any resources listed are shared for reference, not necessarily a personal recommendation. I invite you to listen with spiritual discernment and ask the Holy Spirit to guide you in what you hold onto and set aside.

Yesterday43 min
episode When You Feel Alone: Finding God’s Provision and Presence in a Rare Diagnosis with Brianna Johnson artwork

When You Feel Alone: Finding God’s Provision and Presence in a Rare Diagnosis with Brianna Johnson

When Brianna Johnson's son was diagnosed with Bainbridge-Ropers Syndrome, a rare genetic condition affecting only a few hundred people worldwide, her family entered a journey they never expected. Faced with uncertainty, unanswered questions, and the reality of parenting a child with complex needs, Brianna discovered that even the rarest diagnoses don't have to be walked alone. In this episode of This Unexpected Life, Brianna shares how finding community across state lines and even across oceans helped her family feel seen and supported. She opens up about raising three boys with different needs, navigating school supports and IEP meetings, learning to celebrate "inchstones" instead of just milestones, and embracing the grace to parent one day at a time. As part of our There Was Jesus series, Brianna reflects on the unexpected ways God has shown up throughout her family's journey—through teachers, doctors, friendships, and the small moments that reveal His faithfulness. If you've ever felt isolated by your child's diagnosis, discouraged by slow progress, or wondered where God is in the middle of the unknown, this conversation will remind you that you are not alone and that God's presence is often found in the people and provisions He places along the way. Eps. 51; June 9, 2026 Resources: Brianna’s Website [http://www.briannajohnson.com] Instagram [http://www.instagram.com/bcjinsights]Spotify Playlist: There Was Jesus [https://open.spotify.com/playlist/2wtRR5GLvkDViEtKUto10d?si=dzIPwyuKQcGS4ehOv9K5QQ] If you enjoyed the show, leave a 5-star review! * Get my new resource: 5 Practices For Processing Grief [https://share.hsforms.com/1WC85N-GRTCmZT0cNOmU-7Asw7e4] * Click here [https://share.hsforms.com/1lPdJHmkuS1-jwV2-6hRogAsw7e4] if you want to be a guest on the show * Carrie’s Facebook [https://www.facebook.com/carriemholtwriter] or Instagram [https://www.instagram.com/carriemholt/#] * Find me on Substack [https://substack.com/@cmholt] * My book: The Other Side of Special [https://www.amazon.com/Other-Side-Special-Navigating-Joy-Filled/dp/0800742117]  *This podcast features honest conversations with special needs parents and faith-filled guests. While I deeply value the stories and insights shared, the views and opinions expressed may not always reflect my own. Any resources listed are shared for reference, not necessarily a personal recommendation. I invite you to listen with spiritual discernment and ask the Holy Spirit to guide you in what you hold onto and set aside.

9. juni 202637 min
episode There Was Jesus: Knowing God’s Presence in Trauma, Loss & Disability Parenting with Becky Davidson artwork

There Was Jesus: Knowing God’s Presence in Trauma, Loss & Disability Parenting with Becky Davidson

This month kicks off the new podcast series entitled, There Was Jesus. In this deeply honest episode of This Unexpected Life, Carrie M. Holt sits down with returning guest Becky Davidson to discuss recognizing God’s presence in the middle of suffering, trauma, grief, and caregiving exhaustion. Becky shares how years of hospital stays, caregiving stress, widowhood, and parenting her adult son with profound disabilities shaped her faith journey. Together, Carrie and Becky discuss how trauma impacts the way we see God, the healing power of EMDR therapy, imaginative prayer, attachment wounds, anxiety, and learning to recognize the presence of Jesus in painful memories. This conversation offers hope for special needs parents, caregivers, widows, and anyone walking through grief or chronic stress. If you’ve ever wondered where God was in your hardest moments, this episode is a reminder that Jesus was there — even when you couldn’t see Him. You’ll also hear encouragement about: * Processing trauma safely in community * EMDR and Christian counseling * Learning spiritual rhythms of remembering God’s faithfulness * Healing attachment wounds and anxiety * Finding God’s presence in caregiving burnout Eps. 50; June 2, 2026 Resources: Register for By The Brook or Purchase it for Later! [https://www.risingaboveministries.org/bythebrook]Rising Above Podcast [https://www.risingaboveministries.org/podcast]Spotify Playlist: There Was Jesus [https://open.spotify.com/playlist/2wtRR5GLvkDViEtKUto10d?si=-UTRfqRkSLKp_-y7f-nwLA] Becky on Episode 9: Worst-Case Scenario [https://www.buzzsprout.com/2453184/episodes/17091811]By The Brook: Restore Retreat Experience [https://www.risingaboveministries.org/store-page/restore-retreat-experience-idv]By The Brook: Flourish Retreat Experience [https://www.risingaboveministries.org/store-page/flourish-retreat-experience]John Eldredge’s Podcast: Wild At Heart [https://wildatheart.org/podcasts/wild-at-heart/?gad_source=1&gad_campaignid=23480648607&gbraid=0AAAAADqA04Vmn79kVl76LE-38ip2SfDA9&gclid=CjwKCAjwnN3OBhA8EiwAfpTYekdV1r5l7JyzSuCH_4x9y9EGR2amgc6Fvxt0hdlvaF09U5lgwSh0iBoC9fIQAvD_BwE]John Eldredge’s Books Mentioned: Get Your Life Back [https://wildatheart.org/books/get-your-life-back]Resilient [https://wildatheart.org/books/resilient]Experience Jesus Really [https://wildatheart.org/books/experience-jesus-really]One Minute Pause App [https://wildatheart.org/pause] Healing Care Center [https://www.thehealingcarecenter.org/]Adam Young’s Podcast: The Place We Find Ourselves [https://adamyoungcounseling.com/podcast/]Allender Center: Story Work [https://theallendercenter.org/offerings/workshops/the-story-workshop/] If you enjoyed the show, leave a 5-star review! * Get my new resource: 5 Practices For Processing Grief [https://share.hsforms.com/1WC85N-GRTCmZT0cNOmU-7Asw7e4] * Click here [https://share.hsforms.com/1lPdJHmkuS1-jwV2-6hRogAsw7e4] if you want to be a guest on the show * Carrie’s Facebook [https://www.facebook.com/carriemholtwriter] or Instagram [https://www.instagram.com/carriemholt/#] * Find me on Substack [https://substack.com/@cmholt] * My book: The Other Side of Special [https://www.amazon.com/Other-Side-Special-Navigating-Joy-Filled/dp/0800742117]  *This podcast features honest conversations with special needs parents and faith-filled guests. While I deeply value the stories and insights shared, the views and opinions expressed may not always reflect my own. Any resources listed are shared for reference, not necessarily a personal recommendation. I invite you to listen with spiritual discernment and ask the Holy Spirit to guide you in what you hold onto and set aside.

2. juni 202642 min
episode When Your Child Asks Difficult Questions: Navigating Faith, Medical Motherhood and Rare Disease with Katie Seelig artwork

When Your Child Asks Difficult Questions: Navigating Faith, Medical Motherhood and Rare Disease with Katie Seelig

In this heartfelt episode of This Unexpected Life, Carrie sits down with homeschooling mom of six, Katie Seelig, to discuss raising a child with a rare neuromuscular condition, navigating medical uncertainty, and learning to trust God in the unknown. Katie shares the emotional journey of discovering her son’s scoliosis at age three, pursuing answers through specialists and genetic testing, and eventually learning he had a rare FLNC gene mutation connected to congenital myopathy and cardiomyopathy. Along the way, she opens up about medical motherhood, grief, postpartum anxiety, advocacy, sibling dynamics, homeschooling, and the challenge of carrying heavy burdens while trying to stay strong for everyone else. Together, Carrie and Katie discuss what it means to steward a child’s care faithfully, how to respond when your child asks hard questions like, “Am I going to die?”, and why vulnerability, therapy, and community support are vital for special needs parents. This conversation is filled with honest faith, practical encouragement, and the reminder that even in sorrow and uncertainty, God remains faithful Eps. 49; May 19, 2026 If you enjoyed the show, leave a 5-star review! * Get my new resource: 5 Practices For Processing Grief [https://share.hsforms.com/1WC85N-GRTCmZT0cNOmU-7Asw7e4] * Click here [https://share.hsforms.com/1lPdJHmkuS1-jwV2-6hRogAsw7e4] if you want to be a guest on the show * Carrie’s Facebook [https://www.facebook.com/carriemholtwriter] or Instagram [https://www.instagram.com/carriemholt/#] * Find me on Substack [https://substack.com/@cmholt] * My book: The Other Side of Special [https://www.amazon.com/Other-Side-Special-Navigating-Joy-Filled/dp/0800742117]  *This podcast features honest conversations with special needs parents and faith-filled guests. While I deeply value the stories and insights shared, the views and opinions expressed may not always reflect my own. Any resources listed are shared for reference, not necessarily a personal recommendation. I invite you to listen with spiritual discernment and ask the Holy Spirit to guide you in what you hold onto and set aside.

19. maj 202640 min
episode When Your Yes Is On The Table: Trusting God Through Disability Parenting, Adoption, and Trauma with Johnna Hensley artwork

When Your Yes Is On The Table: Trusting God Through Disability Parenting, Adoption, and Trauma with Johnna Hensley

What does it look like to keep saying “yes” to God when life feels chaotic, exhausting, and completely unexpected? In this heartfelt conversation, Carrie Holt sits down with author, disability mom, and “coordinator of chaos,” Johnna Hensley. With six children—including a son with complex medical needs and three adopted children—Johnna shares what it really means to live a life of unexpected yeses. From navigating disability parenting and biracial adoption to processing trauma, grief, and the reality of “forever nesting,” this episode dives deep into the everyday surrender required to follow God in the hard places. Johnna offers honest insight into: * Letting go of control and trusting God’s bigger story * The shift from big, visible “yeses” to small, daily obedience * Advocating for disability awareness and belonging * Parenting through trauma triggers and emotional overwhelm * Reframing expectations around independence and adulthood * Finding peace in the questions instead of rushing to answers This conversation is a powerful reminder that faith isn’t about having it all figured out—it’s about being willing to be willing and trusting God one small “yes” at a time. If you’re a parent navigating disability, adoption, or the unexpected turns of life, this episode will meet you right where you are—with honesty, hope, and grace. Eps. 48; May 12, 2026 Resources: Johnna’s Website [http://johnnahensley.com]Her Book: Reckless Yes [https://www.amazon.com/Reckless-Yes-Exchanging-Worldly-Adventure/dp/1951350073]Children’s Book: HP and the VIP’s [https://www.amazon.com/dp/B0G5GW9MC2?ref=ppx_yo2ov_dt_b_fed_asin_title] Social Media: IG [https://www.instagram.com/johnna.hensley/], FB [https://www.facebook.com/JohnnaHensleyAuthor/], YouTube [https://www.youtube.com/@johnnahensleyauthor] Listen to This Podcast [https://podcasts.apple.com/us/podcast/listen-to-this/id1845164365] If you enjoyed the show, leave a 5-star review! * Get my new resource: 5 Practices For Processing Grief [https://share.hsforms.com/1WC85N-GRTCmZT0cNOmU-7Asw7e4] * Click here [https://share.hsforms.com/1lPdJHmkuS1-jwV2-6hRogAsw7e4] if you want to be a guest on the show * Carrie’s Facebook [https://www.facebook.com/carriemholtwriter] or Instagram [https://www.instagram.com/carriemholt/#] * Find me on Substack [https://substack.com/@cmholt] * My book: The Other Side of Special [https://www.amazon.com/Other-Side-Special-Navigating-Joy-Filled/dp/0800742117]  *This podcast features honest conversations with special needs parents and faith-filled guests. While I deeply value the stories and insights shared, the views and opinions expressed may not always reflect my own. Any resources listed are shared for reference, not necessarily a personal recommendation. I invite you to listen with spiritual discernment and ask the Holy Spirit to guide you in what you hold onto and set aside.

12. maj 202645 min