158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now

Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought. But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis for a disease that will eventually kill them. In this episode, I sit down with Serena Murison, SLP and owner of Play Spark, as she shares the story of discovering that her son Rudy has Lama2 Muscular Dystrophy, a disease that is progressive and life-limiting. Serena walks us through the emotional rollercoaster of her son’s first few months, as well as the conflicting feelings that have come up for her in the way that she both embraces her son’s disability and grieves the pain of knowing his disease will likely take his life. This episode is SO REAL and raw. It’s one you can’t miss! Links: Get a copy of “The Power of Now” by Eckhart Tolle. Get a copy of “Demystifying disability” by Emily Ladau. Get a copy of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman. Listen to Ep 97: Melissa’s Story. Listen to Ep 77: To those who cannot say I wouldn’t have them any other way. Visit Serena’s website, Play Spark. Follow Serena on Instagram @play_spark! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me 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 us a rating or review in your favorite podcast app!