Saturday, July 21, 2012

Awareness Day

Tomorrow is National Fragile X Awareness Day. It'll be all over Facebook and Twitter.

Well, it'll be all over MY Facebook and Twitter.

You know, I'm trying to be a strong advocate and promoter of awareness. I'm also reviewing a lot lately how I felt and what life was like when we first got the diagnosis, and sadness is catching. I'm writing about it, and it's making me feel it all over again.

Side note - I'm excited to buy the book January First when it comes out next month - the book by Michael Schofield about his daughter with schizophrenia. His blog is excellent, I'm sure his book will be even moreso.

Anyway I remember him saying that when he was doing rewrites and revisions of the part of his book where he talks about the day they had to call the police because his daughter was having a psychotic episode at school, it was painful for him because every time he had to revise it, it was like living through it again.


I'm still sad that the boys have Fragile X. Or maybe, because I'm writing about the discovery of it, I'm sad again.

I wish we didn't have to have an awareness day.

But the only thing worse than having Fragile X in our lives would be having it in our lives, and dealing with it all alone because no one knew or cared.

I know people care.




Next week, around 1000 family members and professionals will converge in Miami, for the International Fragile X Conference. No place or time will contain more awareness.  My dad and I are headed down there to meet people and hear from researchers and professionals, to learn what we can about everything up and coming that has anything to do with Fragile X.

Maybe it'll help me get my head back into the here and now and back to focusing on the future.  I've had about enough of reliving the past.

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