Connecting with others in the Rett community on ‘The Purple Couch’
The podcast allowed me to share my experiences with other mothers
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Earlier this month, I was invited to be a guest on “The Purple Couch,” a podcast sponsored by the International Rett Syndrome Foundation dedicated to all things Rett syndrome, to share how I made Halloween more inclusive for my late daughter, Cammy.
Purple is the color associated with Rett syndrome, and the show is hosted by Megan Ladwig and Vanessa Peace. It was an honor to be part of the conversation, and I walked away feeling more connected to the Rett syndrome community than I had in a long time.
First, listening to Vanessa’s introduction made me feel like a celebrity. She welcomed me so warmly and reminded me of something I sometimes forget: just how many people Cammy affected throughout her life.
Cammy was diagnosed with Rett syndrome in 2011, at a time when there were few, if any, families sharing their journeys on social media. We didn’t have the online community of parents to follow that exists today. In many ways, that was part of the magic of Cammy’s journey. People got to watch our family navigate life with Rett syndrome as we figured things out along the way.
Vanessa has a 17-year-old daughter with Rett syndrome and a 15-year-old neurotypical child. Her children’s ages mirror my own family’s story: Cammy, who passed away on Dec. 13, 2023, would have been 17 now, and her younger sister, Ryan, is 15. Vanessa shared how connected she felt to our family as she watched our journey unfold over the years. Hearing that was a powerful reminder that even when I don’t realize it, our story continues to matter to others.
Next, I was transported back to when Cammy was 3 years old and our family was completely immersed in the Rett world. Listening to Megan talk about her daughter, Dawson, who was recently diagnosed with Rett syndrome, and following their journey on social media feels like watching Cammy all over again.
I encouraged Megan to keep sharing their lives for as long as it felt right for her and her family. I hope she understands the impact she and Dawson are already making simply by allowing others to see their everyday experiences. Life with Rett syndrome is filled with highs and lows, and no two days are exactly alike. Megan and Dawson are doing what our family did years ago: showing the world that, even with Rett syndrome, we find ways to live, love, adapt, and make life work.
Finally, being on the podcast reminded me how much I have missed talking with other moms raising children with Rett syndrome.
Since Cammy died, connecting with parents in the Rett community has been difficult. For a long time, it was simply too painful for me. Everything and everyone connected to Rett syndrome reminded me of Cammy, and those reminders brought an overwhelming sadness. I needed time and space to grieve without constantly being surrounded by reminders of the life I had lost. But grief changes with time. Slowly, I’ve been finding my way back to the community that was such a significant part of our lives for so many years.
Being on “The Purple Couch” with these incredible moms reminded me of the good times. Instead of leaving the conversation consumed by sadness, I found myself remembering the connections, the laughter, the shared experiences, and the sense of belonging that came with being part of this community.
Most importantly, the experience reminded me that I still have something to offer the Rett community. Our family’s story didn’t end when Cammy’s life did. The experiences we shared, the lessons we learned, and the connections we made still have meaning.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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