I have written a lot lately about the things that are happening in my life. I can’t imagine it being any better than it is right now. I have had so many great things happen to me in the last few weeks. I have had contact from a local TV newsperson. He wants to do a story on me this week. I asked him some questions on the phone. I asked him what he is going to do with my story. I wanted to tell him that the most important thing to me is that people understand that those of us without a voice that can be heard with people’s ears, may be intelligent and aware of everything going on in our presence and around us.
I have been so fortunate that I have people around me who have given me a chance to be who I am and not get stuck on my limitations. It has freed me. It has opened up my heart and my health challenges have gone. I don’t need to tell you how hard some of my days are, because it will always be that way with Rett Syndrome, but if the purpose of my life is not just to struggle with those challenges, it gives me meaning. It allows me to have hope. It allows me to be seen for my talents, not just my struggles. I have heard that the Rett research group from our state will be interviewing me this weekend too. They are going to share my CD story with the Rett families in our state. I hope that other families can help their girls find their purpose in this life. It is not an easy life. It takes a lot of work. Sometimes it is really scary, but I hope that my story can encourage others to believe in their girls. It took my Mom and I a long time to find a way for me to communicate. I was ten years old before I typed my first word. It wasn’t fast or easy for me, but it opened up the possibility that I was intelligent, and I could eventually share more.
It is hard sometimes for me to become visible when my body and movements draw attention to me. It makes others uncomfortable. They don’t know what to do with someone who is turning blue! It makes them think I am dying! It is hard when I chew on my bandanas because it makes me appear like I am a child. But, that’s just my body, it’s not my mind. I was asked by Jeff Dunn if I would be willing to help him with a training video he was working on for photographers and people interested in hiring him for their photos. I think it was an honor that he wanted to interview me. Unfortunately when they came with their cameras it was a day when I was hyperventilating constantly. It was frustrating for me but I can’t control it. He said he wanted to come anyway because he wants to deal with real life, not false life. I told him during the interview that I was so glad that he saw me! That he made me look beautiful. That he wasn’t uncomfortable with my movements or my drool. It was wonderful to become visible. That’s what he made me. I became visible in a beautiful photograph.
I will be getting my CD in the next 10 days!! It is so beautiful. I am so happy with the way it sounds. I have a chance to help my Rett friends I my music. I want this world to know we are here. We are here and we are intelligent. I send you courage today.