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Tuesday, December 11, 2012

Tonight is one of those nights when the tears just come.  There is so much heartbreak in life. And when I stop and realize that there is so much more than my own, it is sometimes too much to take.  Im used to mine.  It is sort of getting comfortable here in my lap-- this living with rett syndrome--this life as a special needs mom that I never expected.

I realized today that my two favorite moments of the day are waking Avery up and watching her fall asleep.  Typically she wakes us up with her yelling but every now and then, like today, I have to rouse her from her quiet and calm sleep.  I hate to do it, knowing Im waking up all the stuff that drives us nuts-the teeth grinding, the hand wringing, the yelling.  But for those first few moments, before her brain switches into overdrive, she is smiling and sweet and quiet and there. This morning I couldn't help but just get in under her covers with her for that brief moment and whisper to her how much I love her. I do the same as the clonidine starts to take effect at night.  I brush her teeth while she lays in bed and let her chew on her toothbrush instead of grinding her teeth and watch her eyes get heavy and her hands stop moving.  It is so precious to see her still.  To see the girl she is supposed to be.  The one she would be without those 23 nucleotides missing on her damn mecp2 gene. I imagine the conversations we might have and I miss my daughter.

But she is here.  She is healthy.  She is alive and living it up.  She yells when she feels like it.  She trots around when she is happy and she laughs like no one I know.  It is the best laugh-hands down.  She faces what must be the most frustrating way to live with a smile nearly 100% of the time. Really.

We have lost too many girls this year to Rett and the complications that come along with it. Too many.
One just today.  A 30 year old woman who lived nearby.  I never met her or her family, but I didnt have to. I know them. I read the news and cried at my desk.  A month ago a 5 year old in Maryland passed away from Rett complications.  In September, an even younger little girl passed away after a tough battle in the hospital.    In August,  another.  Karly, whose blog you can read here-inspires me still-reminding me that my goose  is in there.  So in there.

It is hard and it is sad.  But she is here.  And she is happy and Im working on trying to be more like her.

1 comment:

Colleen said...

Funny how with time we focus less on helping them to be like us and try to become more like them. Love you, good job going with the tears and the joy, that's not easy. Xx