I Live With Hope

I woke this morning and while I was praying I felt so much joy.  I didn’t realize how much other Rett families needed to hear from those of us who live with Rett Syndrome and can communicate.  It is with great excitement that I share with you that both of my other friends with Rett are interested in sharing their experiences with you.  It take us longer to write together, so I can have their approval before I post.  I don’t want to include anything that doesn’t make them comfortable.  Much of it is personal but it has been so encouraging to me to discover how much we are alike. 

 Our experiences as young girls, and even now, are similar.  The feelings we have in our bodies and the acts that we do are very alike.  It is so exciting to me to have them willing to share, because for us even, it has been miraculous to find out about our similarities.  It makes me feel less alone.  I know that other families with Rett girls are struggling  to find out how to help their daughters.  I think we can offer some insights that might be helpful to you.  We will be writing as we are able.  I am meeting with my friend Elizabeth on Monday to ask for her help on writing an entry about nighttime feelings

Love, Karly


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