All the Days
Once upon a time and long ago I sat around feeling excluded when everyone was wearing their purple, blue, pink, green, red ribbons to raise awareness for CP, DS, cancer, etc.
I had a kid with no diagnosis, nothing to raise awareness about, no community of people who get it, no actual message to tell people to get.
I had a pity party which turned into an international day of awareness for Undiagnosed Children, because, as it turned out, there were a bunch of SWANS (syndromes without a name) out there. We will be making more noise about that on April 24th.
Then Aidan was diagnosed with Epilepsy and while it was not an overarching diagnosis for all of his medical issues, it has certainly been one of the harder parts of our journey. I quickly jumped on board to raise awarenes on Purple Day on March 26. I’ll be wearing purple again this year and watching pictures on Facebook and feeling included and supported. I believe that’s become an educational day certainly for me and hopefully for you too. I’m having deep thoughts about how I might handle it this year because it still feels incredibly important.
It turns out I’ve gone from zero days to three days. I suppose many kids like Aidan have multiple diagnoses and hence many colors/days/opportunities to raise awareness. This Saturday February 28 is Rare Disease Day. Since Aidan was found to have genetic mutations on his PURA gene, though there is not a lot of scientific study around this, he’s considered to have a rare or orphan disease. I have very little to say to help educate you but blue is the color, saturday is the day, for Aidan PURA is the gene and the 5th chromosome is where it’s at. You know you’ll be wearing blue jeans anyway so just spare a thought for those of us who are raising square pegs trying to fit into a round hole which effects everything from aquiring services to impacting prognosis.
Let me leave you with this cool video: