I was just trying to feel a little less alone and get a little help explaining the myriad of issues around having a child without a diagnosis when I staked claim to an Undiagnosed Children’s Awareness Day two years ago. By asking Dana to join me, what I found was SWAN (Syndromes without a Name) both in the UK and US. Clearly I wasn’t alone.
It may seem ridiculous to have another Awareness Day. I’m already planning for Purple Day next week for Epilepsy awareness (have you washed your purple clothes yet?); and I followed other stories for Rare Disease Day in February; and yet, I still feel the need to keep making noise and drawing attention to Aidan’s issues. Over the years it has become less about finding a name for what he has and more about understanding all of the complex issues involved in his care, though I also believe getting a diagnosis would help the next generation of kids who have similar medical issues.
I’m very excited to say that SWAN UK has some great ideas for bringing attention to this cause. They’re also recognizing blog posts with awards being announced on Undiagnosed Children’s Day (April 13th, have you washed your blue clothes yet?). Reading these posts and seeing people wear blue in solidarity makes us all feel a little less alone.
I encourage you to check out all of these finalists posts. For now, I’d like to share the ones that spoke most closely to me about living with a child with a disability (and yes, my post “When Gratitude is Hard” was nominated in the international category).
What do you Doodle Everyday offers a really interesting graphic of what life entails when raising a child with a disability and comments on living life with both exhaustion and happiness.
Snow is a beautiful post written about the juxtaposition of real life with leukemia and the passing season of winter.
A Letter to My Daughter speaks so much truth about being the sibling of a child with a disability. This one’s a tear jerker.
Top 10 Sentences is a funny post about things heard in a household with a child with Autism.
I Found the Higgs Bosun Particle is a funny post about all mothers’ magical finding powers.
The Gene Team is about Super Heroes and we all know I have a thing about Super Heroes.
The Mom I Would Have Been is about what you miss out on when you’re not raising a “typical” child.