In the Desert of Rett: October ....

I have been crying a lot the last few days. I have been crying about the enormity of the task that my tiny sweet girl faces, for what was robbed from her, from us as a family, the stress it has put on our family and the countless other ways Rett has touched us. I think that October will always be a hard month. It is Rett Syndrome awareness month and the Facebook pages are blowing up with all things Rett making it impossible to just go about the business of living without thinking about Rett Syndrome and all of the things that it takes away when it finally decides to show itself.

I realized yesterday that by the end of this month a year ago I would be video taping and emailing the neurologist about a "weird hand thing" that Emma started to do in the next week or so. Ironically Rett Syndrome had started to make it's self known during Rett Syndrome awareness month. I wouldn't hear the words Rett Syndrome for another 3 months and then I wouldn't be told that it applied to my sweet baby girl for another 3 months after that .... I keep thinking about it. I wonder if I would have changed anything for Emma if I had requested the test sooner, if I had known. I doubt it would have made a difference. I am tripping over Rett Syndrome every time I turn around this month and yet last year, though I am sure the same diligent awareness work was going on, I heard not a peep of it. Strange how the world changes.

It has been quite a wild ride this last year. I feel like at this time last year I started to lose my daughter and that I was forced to stand by and watch helplessly as she vanished with amazing speed before my very eyes. I don't even have the pictures up from the twins 2nd birthday. I never consciously decided not to put them up, they just never got put up. I hate to admit it but I think they were simply too painful to look at and unconsciously I didn't want to see them. The little girl in those pictures is not my Emma. The girl in those pictures is trapped in some far away place where no one can reach her.

For the past several months I have been watching Emma reemerge. I can see so much of the little girl I knew before this nightmare all started and I am so happy to have her back again. I hope that she will stay awhile.... I love her so very much.

I am so happy to see your smiles and your spunk again. I love you Emma...