I left high school in the Spring of 2007. I was so afraid of leaving, because I had so many friends and a place where I found acceptance. I wasn’t unusual there. I didn’t get noticed because of how different I was. I spent many years there. It was all I knew.
I remember when my sister graduated from high school. It was an emotional time for her, but it also a time for celebration. She had a lot to look forward to. She wasn’t afraid. She didn’t have any physical reason to expect to need care for the rest of her life. She had choices. I was so anxious about graduation that I threw up just before leaving for the ceremony. I knew some of my friends who had graduated and I had never seen them again. I tried to keep up with them, but their lives went in another direction. They moved into grouphomes, went to adult day programs or work programs, and their lives became involved with new friends.
This may not sound all that different than the average persons experience, but for someone who is unable to speak, so I can’t make phone calls on my own and I can’t drive anywhere to get together with friends, it is a huge barrier. My new friend that I met at camp this past summer chatted with me on Facebook yesterday, but it was only because my Mom was here and on Facebook at the time, that I was able to visit with her. She struggles to type easily, and is not able to drive herself so our chances of seeing each other are very few. By the transportation and schedules are considered and our health and energy limitations, let alone all the scheduled appointments to keep us healthy, and our weekly activities to keep us occupied, our lives become pretty predictable.
I sit here smiling today, because with all of the challenges I face to keep in touch with friends and have a life of value, I love my life. It is a life worth living for me. I am with my Mom most days during the day hours, so we are able to go places and I am able to communicate with her help. I am working on helping researchers study Rett, I go places that are interesting, I help others understand people like me who are non-verbal and silent, I speak at events when I am invited, I compose music that I can share, I ride horses at my friends house. I was able to spend the week-end with my sister Leah. I am outside as much as possible. The group that we are starting is expanding into our home town and the opportunities we have to serve others and also have artists and writers work with us, gives me much to be glad for today.
I want to tell others who, like me, live with a body that creates many challenges for them to not be afraid. There is life after graduation and for me it is a great life.
Dream big dreams. Dont’ let others determine who you are by your diagnosis. Your life is so much bigger than the limitations of a diagnosis. When our lives have great things going on, our spirits are free, and we have hope.
I send my Rett friends a big hug today.
Working on Australian Rett Research papers
My sister Leah and I at Pioneer Park