National Fragile-X Awareness Day was July 22nd, and I didn't say anything. But then I took another look at the statistics. And I feel like I need to say something now.
I am usually not at all shy about telling people I am a carrier of the full mutation of Fragile-X. After all, I'm certainly not alone! And my thought is, if you think less of me for my genetic background, then you're not the kind of person I'd want to be chummy with anyway.
Although I have been very angry with Fragile X in the past, I am actually grateful for it now. I have been very blessed. I have some hard decisions to make further on down the road if I decide to have children of my own, but I still would not change anything. I feel like I can identify, in some small way, with the families who will walk through the door of my clinic.
My thoughts are not coming together well tonight...I'm pretty wiped out, and I need to study. But I wanted to be one more voice chiming up about FXS, to maybe reach one more person and tell them that life with FXS is not so bad.
In fact, it is beautiful.
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4 comments:
Hi, I came here from Michelle's blog carnival. It's so nice to meet you!
Thanks for posting about Fragile X. I'm a gene carrier for Alpha-1 Antitrypsin Deficiency, and I have passed it along to my children, who both have Alpha-1. People with genetic disorders live life, and thanks for reminding your readers of that important fact.
Jen @ Unique But Not Alone
Thanks for sharing that. Like M's chromosome disorder...it is a part of who you are. I sure do get that.
Thanks for joining in this month, Katie -- and thanks for sharing about Fragile X. I know what you mean about the struggle of being both frustrated with a condition, and being grateful for that part of who you are. You are going to be a fresh and welcome voice in the medical community :)
~Michelle @ In The Life of A Child
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