It is a beautiful sunny morning here. We love them, and I am outside writing this blog. My Mom has our small recorder so while I’m typing she’s saying my words into the recorder.
I want to congratulate my friend Tara Reddington in Rhode Island for the fund raiser they did yesterday to support Rett research. They raised a lot of money to help find a cure for Rett Syndrome. Their daughter Grace, is a beautiful young girl who has very severe symptoms related to Rett. She has been in the hospital a lot. Tara has been so kind to me, and respectful and excited to hear of my experience in living in a body that has Rett Syndrome. Please check out their blogpage: http://www.theraceforgrace.com/
I am aware that I am fortunate. I struggle with many things related to Rett Syndrome, but there are girls and women who are so much worse off than me. I am recovering from another bladder infection and the resulting symptoms of many small seizures and exhaustion. If I could prevent myself from getting sick, and all the trouble that comes with it, I would be so grateful. We are working hard to stay healthy. I am writing a lot for the camp that I am speaking at this summer. I have most of my talks ready. We were invited to the camp directors house yesterday. They made a beautiful day for us.
Here are some current pictures of me walking with Gregg, and me with Beau on our new patio.