Monday, May 30, 2011

"This Stefanie Matters" TO US!

A fellow Rett mom shares her story "Why Girl Power 2 Cure, you ask?" on her blog: THIS STEFANIE MATTERS.


Why did we join Girl Power 2 Cure and why do we love them so much?
Best to start from the beginning.

When we were first diagnosed, we read about the old-school literature of Stages I through IV of Rett Syndrome, which in a not-so-scientific nutshell discusses our daughters normal development, regression, stagnation of skills, and rapidly deteriorating stage until the unspoken happens.

Where was the hope in that? We first brought Anna home from the geneticist and were under the impression that Rett was a death sentence.

Hope and joy were hard to come by. Full disclosure: on Anna's hard days they still can be, but nothing is as black as those darkest days. There are days now that Spring has arrived that I am at the park with the kids and I see a healthy girl Anna's age running, talking, playing... And I think, "Only 1 gene separates my daughter from you." Sometimes I go back to throwing stones at them but other times I can get through it by telling myself their mothers are going to be jealous of me when their girls are 16 and off riding in cars with boys on Friday nights and Anna and me are having a movie night cuddled up on the couch. Ah yes, bargaining! Works every time.

When we found GP2C, the "girl power" confused me at first. I was never a "girl power" kind of gal. But as I perused through their website and stumbled upon "Meet our girls!" I found myself in a symbolic garden of hope with beautiful photos of families and their girls, their moms, their stories, how old they were when they were diagnosed, what has helped them, what hasn't, where they were from.... Not only did I become a believer in "girl power" but here I was looking at these flowers - lovely gals - planted all over the country! How could we not be a part of this? I have become a girl power kind of gal who now has a flower power GP2C bumper sticker on the back of my car. The cynical me is gagging right now. But she doesn't much exist anymore...


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