I want to write today about my dreams for this year. I have had a hard week. My body is doing some things that it has not done before. I am not ready to write about them today, but I wanted to let you know that I am eager to feel better. I am getting a massage today. They always help me.
I was meeting last week with my CD producer, Barbara McAfee. She is so respectful of me and has asked me to do some writing for my CD cover. We are dreaming big dreams together. I know there are many things that need to happen for my CD to be done, but it will be very soon. I am trying to be calm about these things, because it doesn’t help me to get anxious. For those of you who are not familiar with some of the struggles of Rett Syndrome, I will tell you that anxiety and stress are big challenges for us. I am sure that most people would be excited and nervous if they were creating their first CD, but what they don’t feel is the struggle we feel in our bodies when we get excited. I know that most girls don’t have the ability to communicate like I do, so they don’t release their stress through communication like me. But what become very hard is that as my body starts reacting to stress, I stop being able to sleep well, my breathing gets so rapid that I am hyperventilating most of my day, I hold my breathy more, I am not hungry, I struggle to drink, and when all those things happen, I usually get a bladder infection or illness. It is a hard job for my Mom to keep me well, so we have been struggling. I share these things because I want my silent friends to know that I appreciate their private struggles so much. I understand how hard their physical challenges are. I also know that my CD will be very important to share with this world because so many girls with Rett and people who have other disabilities that make them silent, are often not believed in. I know that the people who have heard my music are so touched in their hearts. I know that my music can give them a message that my presence cannot.
To my Rett friends, my dream for this year is to have you hear my songs and find hope in your hearts that you have value in this world, even when things are really hard: that your life is not just a private struggle. I will have my CD ready in a couple of months. Barbara will have a better idea of the amount of time, but I am sure that it will go pretty fast, when we get the music recorded.
I am dreaming of the time that my sister Leah and I can play music freely together. I am thinking of all the photos I have of Leah and I together by the piano when I was younger. I hope they can be inside my CD cover so you can see that music has always been very much inside of me. I am eager to get my songs done. I feel so fortunate because even when my days seem impossible I have much that I am glad for. I have a great family and I am so glad for my Mom and Gregg everyday. Even the hard days are better than what some girls live with, so I feel blessed today. Those are my thoughts, and this is my first blog of this New Year.
I send you peace and love.