I have not felt like writing this week because I’ve had some seizures, but I feel good right now so I have something important to share.
I had a great thing happen last week. I had two visitors come to my house. One of them I had never met before. I felt so honored because these two women are mother’s who have daughters with Rett Syndrome. They heard about me a while ago because of my blog and they have felt so encouraged by my words. They believe in girls with Rett Syndrome. They assume the best about us. They understand something very important. They understand that Rett Syndrome is very difficult to live with but they also know that we have not lost our intellect along with all of our physical limitations. They feel so encouraged by the research that is being done to help cure Rett Syndrome that Ingrid (Harding) started girlpower2cure so they could help raise money for Rett research. That is exciting! But the most exciting thing to me is how much they try and help us right now, even before there is a cure. They are always wanting to find new things that help our quality of life. They inform families and teachers and therapists and caregivers and doctors.
I felt so happy that I got to meet Kelly Butler when they came to Minnesota last week. I got to meet Ingrid a couple of years ago. We hope to help them raise some money as well as awareness in Minnesota. There are so many girls with this disorder who are not diagnosed yet. They assume we have something else. I wanted to share this on my blog because I have lived with Rett Syndrome as long as I can remember and even though I can’t imagine life without it I feel so honored to help people understand some of my experiences living in this body. Ingrid Harding and Kelly Butler are my friends and my heros and I feel so glad they came to see us here in my home.
I am praying that there will be a cure for Rett girls and I hope that it gives us a chance to live free of struggles. I am praying for strength for the girls I know who are suffering greatly in their bodies and need a break. I hope they don’t have to die before they are free from their suffering. Rett Syndrome causes so much pain and so much of our effort is spent to do almost anything. I send my love and peace and hope into the world, and ask that God sends it to the girls and their families who need it most tonight.