Wednesday, October 28, 2015


I wrote and rewrote this. I've didn't really debate what I wanted to say, so much as how I wanted to say it. Even now she still she inspires me.  As my condition has worsened over the past  few years I've lost my mobility and have had trouble communicating.  Not only is it frustrating to have one's body betray you, it's immensely embarrassing to have people assume things about you when you misspeak or can't speak at all. I have days that I'm sad to say I refuse to leave the house because I just don't want to deal with it. Honestly I'm ashamed of myself for it. I can still get about on most days. I can still talk. Gabby, for most of her life couldn't. But she still loved going places. She still loved to have people visit. She laughed and enjoyed life.
I'm ashamed because I think if she had suddenly found herself with my physical problems she would have been overjoyed. To be able to speak, even if it wasn't always perfect. To be able to sit up on her own. To read out loud to her mom, instead of Crystal reading to her.  To simply be able to hug her mom and dad and tell them how much she loved them. 
Over the past few years, the times have increased when I really don't want to get out of bed, much less leave the house and I just hide in my room all day.  I turn down invitations because I'm afraid of doing something off, or worse not being able to do something I used to be able to. Those are the times I remember Gabby and her joy for life, even in the simplest of things. I feel horribly ungrateful for what I DO have and what I am able to do.  I remind myself to enjoy every moment I can.  I share Gabby's story, and the stories of the other Rett's girls and their families that I've been fortunate enough to meet.    I pull myself together and take advantage of what I can do.  I go out because if Gabby, or any of the other Retts sufferers, could go they would  and would love every minute of it. I tell their stories because I can and I hope that the more people that learn about Rett's Syndrome the more people there will be that will want to help make a difference for those who suffer from it.  

1 comment:

  1. I want to comment, but I don't know what to say, except, that I can relate.

    These girls make you appreciate what you have.