As a parent of a child with a rare disease, I've found that although my child may have a diagnosis that few others share, I have much in common with other "Rare Parents." Many of us face similar experiences, whether that be when dealing with insurance challenges, navigating educational resources available to our children, or breaking down the latest medical research that may provide glimmers of hope. I've found that Rare Parents, as I, want to feel a sense of belonging and to make connections with people who understand their world. This journey is the most difficult but also the most inspiring aspect of my life, and there are other caregivers out there that feel what I do--grief, frustration, and overwhelm, but also joy, pride, and awe.
Before having my son, I believed that becoming a new mom would be the most fun (and tiring) job. Although that is definitely how my parenting experience started, that reality came crashing down when my son had two strokes, on Christmas Day in 2015. He was only nine months old.
As I've navigated this terrifying road, I have come to understand that I am not alone. I have met so many wonderful parents who supported me and lifted me up when I was drowning. I joined Facebook groups hoping I could meet other people who could answer all of my questions and make me feel better about Buster's future--I have learned so much about Buster's condition that I could probably have an honorary degree in neurology. Wrangling insurance representatives has become a new hobby. Advocacy is a new strength. Tears in the shower are a common occurrence and therapeutic.
With all of this on my shoulders it is crucial for me to have a support system. I implore you to do the same. Find your common ground with other Rare Parents and reach out. Share your celebrations, fears, questions. I created this space to help others connect, learn and grow...together.
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