Several years ago I invented Undiagnosed Children’s Day. I just claimed the day, asked people to wear blue, and wrote a little about what it meant to have a child with an undiagnosed disability. Last year, one night before April 13th, I asked Dana to celebrate with me. Nothing like putting another mom on the spot with no time to prepare. She rose to the occasion to continue telling her story.
Honestly, I still run into people that look at me askew when I tell them Aidan doesn’t have a diagnosis, as if I just haven’t been listening properly to the doctors or I haven’t searched hard enough. I get it. So I started this day to feel less alone and to open up this conversation.
Turns out it’s a real thing now. Through this day last year, I discovered SWAN (Syndromes without a Name). I had no idea they existed. Now both the UK and USA branches are promoting my made up day. They have some great ideas for generating conversation here. They are also hosting a Blog Post Award. I mention this now because nominations for any single blog post need to be in by March 3rd. It is primarily for bloggers based in the UK and Ireland where I know I have some readers, but there is also an international category. So get on over there and check it out.
Clean your blue shirts for April 13th and be ready for a blog link up. Writers, get ready to write. But first clean your purple clothing and be ready for Purple Day for Epilepsy on March 26th with another blog link up. In April I’ll address how Aidan’s diagnosis of Epilepsy still leaves him as a child with an undiagnosed disability. Confusing, eh?
Dana’s post The Mom I Would Have Been has been nominated in the international category.
Tomorrow is Rare Disease Day! Undiagnosed definitely falls in that category…check my last post for the links to Rare Disease Day and Global Genes Project.
Things are gearing up nicely in the UK for the 13th, aside from our online stuff there are also about 4 parties being planned (with hopefully a few more in the pipeline) so we will make sure we share the pictures!
The fledgling SWAN Australia have also been in touch and are hoping to join in too!