I have a very big week coming up and I have not been feeling good for a long time, so I am going to ask you to help me by praying for me. It is next week that my sister is coming from Ohio and we are going to be recording my music in the studio on Thursday and Friday. I was suppose to have my photo taken in a studio this week for a CD cover, but I had seizures on two days so I was not able to go. I was exhausted. It is unusual for me to feel this bad for so long. I have a fever and so far the doctors have not helped me at all. I want to get better so I can be involved in the studio because the songs are the ones I composed and it is my input that is important to make sure they sound exactly right. I am excited and I have been waiting for this week for a long time.
Here are some pictures my Mom found of my sister and me when I was much younger. I have always played around the piano. It has been part of my life since I was born.
Here is what I wrote to put on my CD cover.
I have lived for 24 years with a rare and often misunderstood disorder called Rett Syndrome. For most of us living with this disorder there is little chance to share who we are. Most of us cannot speak to share what we are thinking, let alone demonstrate that we have intellect. Our bodies are often very difficult to live in because of the effects of our disorder. But I don’t want to have you focus on what we cannot do; I want to have you believe in us for who we are as people. I am able to communicate, unlike many of my friends all over the world with Rett Syndrome, who are not able to freely express their needs and dreams. Because of this I am able to tell you that there is far more intelligence in each one of us than you can see. We are eager for you to see our gifts and talents and give us opportunities to express who we are.
When I was born, my Mom played piano everyday. She would hold me on her lap in front of the keyboard and play. I loved how it sounded, and tried for many years to reach my hand towards the keys, but it was so frustrating for me because my hands weren’t able to play.
I was fifteen years old when my music therapist, Karen, was inspired to see if I had songs held inside of me that needed to be shared. She found a way for me to communicate my songs so she could write them down. It is because of her persistence and hundreds of hours of us working together that these songs have come to your hearing. I am so glad for her belief in me and my talents and the hours we worked without a lot of accomplishment. She gave me a voice that others can hear, because she felt that my songs were meant to be heard. . To have my music performed by someone whose hands are not challenged to play the correct notes, has changed my voice in this world.
I hope that when you listen to my music you believe in girls with Rett Syndrome and their hidden gifts and talents. We are waiting to be seen and heard and have our own unique voices in this world. For my friends who have very high physical needs but are without an audible voice, I gift this music to you. We live our days on earth in silence, but I want you to know, that I believe each person has great value and with the right people to surround us, our lives will be seen as the light that they are in this dark world. Thanks for hearing what I have to say through my songs.