I am happy about what took place yesterday at the conference. It was my first opportunity to share my story with a professional audience. It was so exciting to hear their feedback. There are many people who haven’t met someone like me. I think because of my gift of composing I am able to offer something they can hear.
It was a beautiful place with lots of sun, plants, and even trees indoors. The piano was a baby grand and it sounded great. Those who spoke to me said they were inspired by my story. It gives me courage to keep trying to share my story, thoughts and my music. It seems to make a positive difference. I want to have that be my gift to the world.
I am so honored that the audience gave me a standing ovation. That has never happened to me before. That was the first time. I am overcome with joy that they were impressed enough that they honored me by standing to their feet. It wasn’t because they felt sorry for me, but because they enjoyed my music and my story. It is something that most of us who live with a silent body never experience.
I am so inspired to continue composing and sharing my story.
Here is part of the text that I wrote for the conference:
I, along with many others my age, am trying to find my purpose in this life.
I am so glad to share my story because it helps me know that my experiences can be inspiring to others.
I have many interests that have added joy and purpose to my life. Some of those are:
· Therapeutic horseback riding
· I train my miniature horse with my Mom
· I love being outdoors and having picnics and going for walks on the trails-Sometimes Beau comes with us. It is fun to see peoples’ faces when they discover that he is a horse and not a large dog.
· I am discovering a love of painting
· I love to write about my experiences on my blog page
· I am in the process of writing a script for my documentary. A filmmaker that has met with us is very eager to share my story
· And of course I compose music for piano. It has changed my life to be able to share the songs that are in my heart.
· I am interested in history & cultures other than my own
I have Rett syndrome, but it does not define me. I may be a surprise to you because you were informed that women with Rett syndrome are not able to communicate. I am here to bring hope to others who, like me, are silent.
We were introduced to the method I use for communication when I was nine years old. I wasn’t diagnosed with Rett syndrome until I was twelve years old. Most doctors were not aware of Rett syndrome until the mid-nineties. I was born in 1985. I had Rett syndrome before most people knew about it. It has kept me from being restricted by the belief that others have about what girls with Rett syndrome can do.
It all starts with belief. Believe in me and I will fully become who I am. I understand how limited I can be by others understanding of what I can accomplish. If you believe I can only function at a certain level, the goals and activities you have for me will limit me. I cannot prove to you that I am capable of more, if I depend on you to give me activities that will challenge me. I cannot walk away from situations that are unbearable, to demonstrate that I am not interested. For those who can walk away, they are labeled, as well.
“I have been amazed at the interest people have shown in my music. I love to share it because it gives me hope that you will believe in the silent people who though they cannot share their thoughts directly with you, have talents that have yet to be discovered.
“Music gives me a voice that others can hear. I have a way to touch people through my music. When I compose songs I feel so alive. It is from these songs that I can reach peoples hearts.”