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 faithfulEps. 49; May 19, 2026If you enjoyed the show, leave a 5-star review!Get my new resource: 5 Practices For Processing GriefClick here if you want to be a guest on the showCarrie’s Facebook or InstagramFind me on SubstackMy book: The Other Side of Special *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.