Rett Syndrome

I sit here this morning with Pandora blasting some of my most favorite songs. Ones that bring me to the feet of Jesus. They help prepare my heart and put me in a place in which I can worship and converse with God. I don't get to go to church this morning.  I don't get to worship with my fellow believers because of Rett Syndrome. This is the disorder that brings havoc on my oldest daughter. She fights with dignity, perserverance, grace and an amazing amount of will power. She inspires me, her ability to smile in the dark parts of the journey, light fires in my soul. She is a child created for great things. I want to help her do them and I want to give her an environment to succeed.
I also want to kick Rett Syndrome's BUTT. Actually that is a lie. I want to eradicate it, I want to be part of it's demise. So I am calling Rett Syndrome into battle. On February 23 I will run the Disney Princess 1/2 Marathon in honor of my daughter. I will run with Girl Power 2 Cure. I am not a runner but I have to do something that will serve a right punch to this horrible disease.  If you are asking how can running do that well here is how.  First, I needed to do something physical, something that made me feel like I was in physical combate with this disease.  Second, I will be raising funds during this training period.  All of the funds will go to Research for treatments/cure for Rett Syndrome.

This is Rett Syndrome

Beautifully and wonderfully made.

With eyes that peirce your soul

Living in a world that doesn't fit her

Trapped inside her body.

And some how she finds a reason to smile.

Even when she is forced to sleep off a "bad" day.

So I spend the morning here at home watching her sleep and thinking about all the things she is missing.  I will pray over her and pray for a day when here on this earth we get to hear her tell us the things she thinks about.  When I get to hear her say my name or hear her say "I Love You!"  Oh, to see her get to interact with friends the way she really wants to and not confined by the limitations of Rett Syndrome.  She is amazing now but I do want more for her.  I want more of her and less of Rett Syndrome. 

You will find an a link to a jewelry party I am having where some of the proceeds will go to Rett Syndrome.  You will need to put Kara as the party.  Noonday
For the next several months I will be posting on ways that you can help kick Rett Syndromes Butt.  October is Rett Syndrome Month so find some purple and get ready to be bombarded with ways to help, ways to make Rett Syndrome less and Rin more!

While I finish this post this is the song that is playing and I weep.