looking back...

As I was watching Sorel today in OT I went back a few years in my head to where we started our journey with Rett Syndrome. I think of all the things Sorel couldn't do, the things she would never do, the overwhelming sadness of it all. She could barely sit on her own, would topple over, could no longer feed herself, constant hand to mouthing, she gagged on food and we were constantly worried about her choking. Being our first child and not knowing much different it kind of became the norm for us and we eventually got into a groove. But outings to friends homes, parks, beaches, wherever there were other children running around doing the typical things children do was like a knife in our chest, sometimes we would come home put Sorel to bed and just cry. Flash forward to today, I'm watching my now first grader in therapy and I am in awe of home far she...we have come. What may seem so simple as a movement of one part of one muscle, a neuron firing that may not have been before is so so so huge! I look at her rolling on the floor with the help of her therapist, throwing her legs and arms with purpose trying to do the things she knows we want her to do. I look at her right arm still braced but no longer needing the left arm brace as her hand to mouthing on that side is gone....again so so so huge! What may seem so simple to most is so grand in our Rett world. So baby....you have come a long long way, you amaze me each and everyday, your strength although not physical is massive, your glow is brighter than the sun and you continue to teach me each and everyday.....I love you!