216: Cindy's Story | Survival Mode, Unexpected Grief + Navigating Inclusion and Accessibility

When you’re raising a child with complex medical needs, the early years can feel like one long stretch of survival mode. Hospital stays, surgeries, therapies, and constant uncertainty loom large over everything.For Cindy, that uncertainty started before her son Thoren was even born. After a routine ultrasound raised concerns, her family began a medical journey that would eventually reveal not just one rare condition, but a genetic mutation so uncommon that Thor was one of the first documented cases in the world. In this episode, Cindy shares the story of Thor’s early years: surgeries shortly after birth, years of hospitalizations, and learning how to advocate for his medical needs again and again. She also talks about the emotional side of caregiving: the grief that shows up in unexpected moments, the challenges of navigating medical systems, and the complicated transition that happens when survival mode finally begins to ease. Plus, she shares her thoughtful perspectives on the importance (and difficulty) of including Thoren in as many places as possible and why that can prove to be so difficult sometimes.Finally, a big thank you to our sponsor for today’s episode, Huckleberry Hiking! Learn more about how they can help make hiking more accessible for your disabled kiddo here!Links:Visit Huckleberry Hiking’s website.Listen to Ep 180: Does Disability Parenting EverGet Easier?Connect with Cindy on Instagram @montanareinhard!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.