201: Roya's Story | A Diagnosis Without a Map, Learning to Advocate + the Journey Back to Herself

From the moment her daughter was born, Roya had an inkling that something was different. What followed was a long year of uncertainty, endless medical tests, and finally anofficial diagnosis of Schaaf-Yang syndrome... all on top of learning a new language of care no parent expects to need.In this episode, Roya shares the disorienting early days of her daughter’s diagnosis journey, what tending to her own mental health looked like in the midst of caregiving, and how she eventually found purpose in advocacy and community. From becoming her daughter’s “historian” to learning that even the strongest caregivers break down, Roya’s story captures so many of the aspects that shape the lives of disability parents.If you’ve ever had to rebuild yourself in the middle of medical chaos, this conversation will hit home. Links: Listen to Ep. 180: Does Disability Parenting Ever GetEasier?Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Connect with Roya on Instagram @roya.malaekehDonate to the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app