129: Maddison’s Story | A Delayed Diagnosis + Painful Comparisons

Have you ever felt like you just don’t quite fit in this community of medically complex parents, because your life isn’t “hard enough” or your child’s disability or diagnosis isn’t “severe enough?” Maddison has been living within this feeling of imposter syndrome for years now, as she’s navigated the long and winding road to finally receiving her daughter Eleanor’s rare diagnosis. In today’s episode, Maddison shares with me how, despite her family’s struggles, she’s still had trouble feeling like she belonged in the medically complex community, and how she eventually came to terms with that reality. We also dive into the trickiness around overcompensating with our children who have disabilities and what it feels like when the people around us seem to be over our children’s recurrent medical issues. If you’ve ever felt like you’re still finding your place in our community, this is one episode you can’t miss! And a big thank you to our sponsor GeneDx for making this episode possible. Check out their website for more information on genetic testing if you’re still searching for a diagnosis in your family. Links: Check out our generous sponsor for this episode GeneDx! Follow Maddison on Instagram @maddisonjhall! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!