Somehow even after being in this game with my little girl for 6 years, it never gets easier. I don't mean it never gets any easier, it has its days. Marginally it has its ebbs and flows. Some days I have tons of hope and feel like all is right with the world, and then there are days like today.
My daughter just got through with 5 weeks of serial casting. She had new casts applied each week for 5 weeks, constantly tweaking and moving her foot to increase her range. It was amazing. She could actually get her heels down when she walked as soon as they were off. And it was fairly quick, and she did handle it with strength and never complained. I did. She was heavy and not super mobile. But she was a trooper.
Then the next week we started Adlei Therapy. It is an intensive suit made from the cosmonauts that has a series of pulleys on it. She wears it for an hour and a half and does some really hard therapy during her time. I watched yesterday and today as her little face just looked completely taxed and exhausted. It was tricky for her and her little legs with all those wires looked so small and so tired. I watch. I bear witness. I cheer her on. But days like today just beat me down. I don't want to watch my child suffer. I don't want to be the Mom and have to cheer her on when I want to cry and sweep her up and run. By ten am I could have collapsed I was so exhausted, and it was solely emotional.
I wish I was stronger, and more like my daughter on days like this.
But here's to faking it in the face of our children!
Patty
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