I was asked to share a message this morning at a meeting for ARC. It was a great event with many kind people. There were 300 people who came. Many of them volunteer with people who have a disability and many of the volunteers live with a disability. They make a big difference in this world. I was so honored to be asked to share a message. It adds to my amazing year! I felt great and I had friends and family with me. My mom and step-dad and Ashley and Amy, came to support me. My Mom read my message.
May 22, 2010
This has been an amazing year for me. One year ago, I wondered what to do with my days. I wondered if I would ever have friends who understood me. I wondered if my story could help others. I found out this past year, that my story has opened the hearts and minds of people all over the world and that my diagnosis does not determine who I am, and what I can do with my life. Thanks for asking me to come today. This is a very special honor for someone who is non-verbal.
One of the greatest things that has happened to me in my life is finding a way to express myself through my music. I have a voice that others can hear with their ears. I have never spoken in my life. It’s not because the therapists and my family haven’t tried to help me do that, but because I can’t. What I don’t want to have people believe is that those of us who live without an audible voice are unaware or ignorant of what is going on around us. We likely see and hear most things. The inability to speak does not determine a lack of intelligence.
I wrote this poem, and had my sister Leah read it on my CD.
In My Own Words
I see these things with my own eyes
I see a positive future
I see strength
I see hope
I see journeys yet unknown
I hear music yet to be composed
I see friends who believe
I see life with meaning
I see kindness in stranger’s eyes
I see hearts open
I see you
I see you
If people believe in us the opportunities they offer us are very different. If you believe I am a one year old like the tests determined for me, then you offer me the chance to show my intellect by having me sort blocks and match colors. If I can’t do that correctly because my hands don’t work well for me, then I am offered even easier things to do, like remove my hat. This may seem like a joke to many, but it is my story and I experienced these things when I was in school for many years in a row. My music is what is inside of me. Because my music therapist, who I met when I was in school, knew my family was musical she offered me a chance to compose music. That started something that has been life changing for me and my family.
Before I was able to communicate or compose music, my life seemed way too hard. It wasn’t a life I wanted to live. It was a life full of challenges and loss. I have interesting things to look forward to now. I have a life that I love. I have songs yet to be composed. I have blogs to write. I am one of the chapel speakers at a camp for adults with disabilities this summer. I have been encouraged to write a book, which I hope to get started on this year.
I have hope that this world is beginning to see those of us who live with big challenges as people who matter and people who have talents and gifts that need to be shared. When we are given this opportunity our lives have purpose and we inspire others, not because we are so different, but because we are really the same inside.
I have a group of friends who meet every week. Last year, when I was freer to be with them, we worked one day on poetry. I wrote this poem.
I Am the Flower
I am the flower coming into bloom
I am a tree planted on a hill
I stand in spite of storms
strong and free
I am a fire
Warming the hearts and souls of many
I give comfort in a world of cold stares.
November 16, 2009
Thank you for the ways you do this for others. The little things and the big things we do for each other, make this world a better place for those of us who live with great challenges. Your kindness fills our hearts and gives us hope.