This morning we were going through all the pictures people are posting from the Disney Half Marathon and surrounding races. Families, friends,siblings and complete strangers running on behalf of our girls. A complete stranger running in my own daughters name. For years the majority if not all of the money raised for research and awareness for our girls has come from their families. Strangers and the public taking a stand and getting involved is something of great relief for all of us.
We were talking about the great costumes, I must have a tutu and a cape....for starters. It was so fun to virtually cheer them on, covered in their GP2C gear. I started feeling it yesterday. I must be there next year. Will I run? Probably not but I will run in my heart and I will fundraise for Team Abby. I will encourage local and others to run in our name. But I will somehow challenge myself.
Looking through it all Abby was getting excited. She started to rock and verbalize, almost never words but sounds and shrieks. We had Dora the Explorer going on in the background, of course.We saw a pic of a girl with her family helping her across the line. I'm almost sure her mother had finished and then grabbed her so she could cross, but it was so moving. I literally just blew snot on the screen telling you about it.
That's when I heard it. Abby was rocking and woo woo wooing and there was a bully episode on Dora and the character said, "Roll away. " Abby shrieked "Row Away!" then turned to me and shrieked.
Big deal huh? It is. For the majority of our girls there is so sound short of a whimper when in pain.
We are lucky when it comes to Rett Syndrome. No, my daughter can't get up from a chair or couch on her own but I know a beautiful girl her age who is just now sitting up on her own. Like most girls a giggle or a whimper is all you get. . No my Abby can't talk but she does. I'm sure of it. In her mind and every once in a while it comes screaming out. When those times come I am reminded that she is trapped, she is there and I need to fight for her more.
I do get fed up and I have times where I just want to live and accept our fate. I don't want to scream Rett from the rooftops 24 hours a day. I just want to be her Mom. It's time for another round and I'm ready to fight.
Roll away Rett roll away.
The half marathon is tomorrow but there have been races and events leading up to. I will leave you with pictures but I am going to lace up my shoes and get in shape.
This is what love looks like!
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