It is snowing in Minnesota again! Last week it was beautiful and we lost a lot of snow because it melted. But today we are suppose to get about 15 inches again. It is not what we wanted, but we are lucky that we have a warm house.
I wrote something last week for the Minnesota Women’s Press. My music producer, Barbara McAfee told me that the theme of the newspaper for April is Women and Voice. I had 450 words that I could write, so this is what I sent in. I don’t know if it will be chosen, but it was fun to put my story into that many words. I love to write. It helps my body calm down to get my thoughts out. I remember how hard it was before I could communciate, so I really feel the struggle in my heart for those who can’t communicate.
In My Own Voice
I have lived for 25 years. Only my mother has heard me speak. I was nine months old and I said “meow” when we were reading a book together. It was the first and last word I ever spoke. I tried really hard to speak, but it has not been possible for me because of Rett Syndrome. After years of therapy and questions, we got that diagnosis. Many things changed. It was a burden to be a young girl with Rett Syndrome because little was expected of me by everyone but my mom. She knew I was in here. She believed when others talked about her behind her back. I heard them. My story is one of great joy and happiness because, in spite of all the things that have been taken away from me in my life, I have had many great gifts.
I began working with my music therapist when I was 14. She believed in me and gave me a voice by developing a way for me to compose. I didn’t know if it would be possible for anyone to hear what I heard in my head. But with much effort a song came out. It was heard by others for the first time. I cannot use my hands to play piano. I cannot hum the song I hear in my head. I cannot write it down, so each note is slowly and carefully chosen by me from cards that my teacher places in front of me. Somedays it’s impossible for my hands to work. After many months of effort, my song comes to others’ ears.
It’s been many years since we finished my first song, but that song changed my life. I was no longer just the young girl with the diagnosis of “profound mental retardation”. Those who believed, heard my voice and saw me in a more loving way as someone who had lost so much because of a disorder she never chose. I have finished nine songs. The best day of my life was when I sat with my family and producer in the recording studio, surrounded by people who felt my voice needed to be shared. I heard my songs performed by a wonderful, professional pianist. They brought my music into the world on a beautiful CD, that I titled, “In My Own Voice.” My sister’s viola added depth. I hear more music yet to be composed and I feel content.
I hope when you meet someone who is unable to speak that you assume they are intelligent. It may change their life to have just one person believe.