Archive for August, 2008

To a Young Girl with Rett Syndrome

I am thinking of you today because I know you are in school now. I think of you because I know your teacher has a great big wish for you. I know it is so important to have people believe in you. If you keep on believing in yourself you will be able to communicate soon. You are very anxious to let everyone know who you are because you have been silent too long.

Don’t lose your will to live a good life. It will happen for you. You will notice others your age who are doing what you want to do. It can be very sad. It helps to remember you will be different from them, but your life will have great value. Your life is difficult sometimes, but you have gifts and a story that no one else has. It is a story that only you can tell. I think your story will be a very interesting one because you have a great family and teacher.

I can’t wait to hear directly from you.

Your friend


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Message to a Special Teacher

I am writing today to give honor to a very special teacher in my life. If I hadn’t met her and had her for my teacher the last seven years of school, my school years would have been a very painful memory. It was a difficult choice for my mom to make to have me transferred to another school district for my education. At the time my health was very bad, I was so sensitive to smells, dust, mold and many foods. We didn’t know how to keep me healthy yet so I was sick and weak and unhappy.

I was 14 years old when I met LuAnn, she was so kind to me and spoke to me like I was intelligent. I met students in her class that became close friends while I was in school. It was so different in her class because she believed in me just like my Mom did. If I didn’t have her I can’t imagaine how different my life would have been. I became eager for school, I looked forward to seeing my friends. I became known in school for my special talents and interests. My Mom had worked so hard trying to get me music therapy in school, but for the first years of my education the school blocked her efforts. I had it at home but not at school. It soothed me so much.  What I couldn’t share was that I heard music in my head. It was so beautiful that I needed to share it. When I started in LuAnns classroom she and my Mom had me start working with the music therapist that continues to work with me to this day. She gave me a voice through my music. She helped me find a way to share my songs. LuAnn encouraged me and set up a gathering at school so my first song could be heard. I was so filled with joy . My Mom heard it for the first time that day. LuAnn was so excited for me and found ways for me to share my talents with others at school.

She is so much a part of me. I miss her greatly. My Mom and me wish every student who needs extra support have a LuAnn in their lives. For the teachers who are reading this and are open to the possibility that their students who are silent are very capable, I honor you. You are making a huge impact by first believing in them. If you are fortunate to be part of that students life when they discover a way to communicate with you, you will have changed their world and those around them who have not heard their voice. If LuAnn had not believed my Mom, and had read all the reports carefully prepared for her by other teachers, I would not be writing this in her honor today. The reports are not who I am. They are not helpful to those of us who are silent. I am so greatful for those who have given me love by their belief in me.

I am attaching my seventh song to this blog. I titled it “For Strength”. It is to honor my family. It is because of their support of me that I am able to share my talents with others. Their love gives me hope, strength and courage to face my life. I hope you enjoy this song. It was played by my friend Karen, who is my music therapist.

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Everyday Olympics

I love to watch the olympics. It is so inspiring to hear their stories. I think my favorite events are gymnastics and running. I want to tell everyone that my heroes are not the ones that make it to the olympics in China, but the ones who in their own way struggle to acheive their own personal goals everyday. They are not noticed by most of the world for their acheivements because they happen in the privacy of their own homes and lives. If the world knew what it takes for many of us to walk and communciate, eat independently and in my case even to breathe, we would have a huge audience cheering for us.

I have had more seizures than usual lately, so it has been very difficult to write. It often takes me 2 days to recover completely. I have been told that seizures take as much energy from our bodies as running a marathon does. Sometimes I am so exhausted I can’t lift my head. In spite of all that I still have the desires of everyone else to acheive my personal goals. I’m moving ahead with the documentary. I hope to be filmed today riding a horse named Rebel at my friends’ house.  I continue to try and stir up interest for an arts program in our community. I love hearing from people in response to my blog entries. It has made me so happy to hear how much my sharing has helped families all over the world. Please check out my new page of questions and answers and my picture of me typing with my Mom. I hope to add one of my songs to my page soon.


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When People Get Together

I am so amazed at what can happen when people get together and combine their ideas. I am so excited about a group my mom heard about in Ohio who are doing some amazing art.  I think it can happen here in our state too. The group is called Passionworks. They have found a way for adults who have challenges and artists to work together to create beautiful art. It has helped all of them have a better life.  It has made them noticed in their community. They are respected for their talents.  It is beautiful because I know most of the adults were ignored before they found their gifts.

I want to be noticed for the gifts I have, not for the things that are considered wrong with me. It is hard to have people notice me for all the wrong reasons. It is something those of us with visible disabilities want to see changed. If everyone who had some personal challenge be visible to the world, it would change how we interact with each other. It is incredible that adults and children stare at me. I see myself as extrordinary and others as ordinary!

I am really not all that different from others.

I laugh, I love, I eat, I eagerly wait to see friends, I feel sad, I hurt sometimes, I have great days and hard days.


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