For the last couple of weeks or so I have watched my newsfeed transform into this advertisement for rare disease day. I suppose that is my fault for having the majority of my friends from the world of rare. Maybe that in itself isn't the fault, maybe the fault is that I haven't snoozed them? It has been a day on the calendar I have always felt conflicted over since 2016, never sure whether it was a day to celebrate or berate. The purpose I suppose is to have a day to give recognition to all of the rare that is a part of the world. Another day to raise awareness over various disorders that might not have the recognition that is needed to find cures or monetary assistance to conduct research. For many families, it is a way to bring to light that despite the struggles that their children or family member face daily they are strong, they have prevailed, and yada yada yada. However, for me, a year and 25 days after I had to bury my rare, I feel like it is just another day to slap me in the face.
This year specifically the CDKL5 community in America decided to post pictures of their kiddos with signs that say "CDKL5 is..." The first word that came to my mind to complete that phrase, "CDKL5 is death". Probably not the cute # that the community was or is going for, but the truth and reality for SO many nonetheless. I didn't bother to submit my picture of Sonzee's gravesite or of a picture of her from when she was actually alive holding a piece of paper that was photoshopped. I am fairly certain it wouldn't have been shared, you know since it could be too depressing, or possibly make others afraid. You know, as if pretending makes the harsh reality somehow not exist? Or as if not talking about the reality of rare and the potential of life after rare makes it so other families don't join this dark side of rare!
I understand better than anyone how challenging it can be to have the fear of death hanging over your shoulder when it's your child who is still living and breathing with the same rare that took away Sonzee. I understand that maybe posting #brave or # some other positive word is just a way to try to focus on the bright side, to try and remove the haunting bad Joo Joo that hangs over your head every day. Or maybe, parents really do think that what happened to Sonzee is the rare of CDKL5. Maybe they aren't ready to acknowledge that CDKL5 can actually be the sole cause of death. But, today on February 28, 2021, when everyone is doing their best to get the word out about rare, just remember, to many, CDKL5 and other rare diseases are #death.