Archive for May, 2008

In Every Great Struggle

I know in my recent posts-well, let’s face it- in all of my posts I have been rather serious. I’m sure many of you think that I am a sad and rather serious person. I am not at all depressed most days, and I love my life.

I have been fortunate that I have a great family who loves me and has given me great strength and much courage. I am not able to do much in my life without support, so I depend on the involvement of great people. If I knew what I was able to accomplish as an adult when I was a young girl, I would not have been so discouraged with my life. If I was aware that even though I was physically limited, I would be living a great life, I would not have felt so oppressed.

I want parents of young girls with Rett Syndrome to see them through new eyes. We are not so disabled that we cannot have rich lives. I know there are many physical things to be concerned about, but don’t let that stop you from dreaming big dreams about your daughters. It means so much to know that our parents have hope for us.

If we are only given opportunities that are determined by the school systems and therapists, our lives would be very small. I am able to compose music, write for my writing class, ride horses with support, train my miniature horse with my mom, and speak to groups because I have the support I need to do so.

If my Mom didin’t believe in me I wouldn’t have the will to live. I have a purpose for being alive. It is my God given gift to share my life with others because I love life and I know that even though I struggle in my physical body, I have a higher purpose. I believe that one of the reasons I can communicate, is because I am suppose to share my life’s story with others, so that those of us who struggle to be heard and understood can be believed.

I know of many who like me, are silent, and when we get together we understand each other. We don’t need to speak in an audible voice. It helps us to connect to those who are silent. I am capable of having a voice because God has given me the ability to communicate.

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A Great Day

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.”

Karly

 

 

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Giving The Silent Dignity

I am sitting here this morning feeling very content. I have just used facilitated communication with my new friend Stephanie. It gives me hope that we will be able to communicate freely with each other. Without being able to communicate with caregivers I am at their mercy. It doesn’t give me the opportunity to share my thoughts, feelings, concerns, needs or desires with them.I am so happy when I am able to give voice to my needs. It makes me more connected to those who are providing care for me.

For too much of my life, I have tried to connect with the people around me and have not been successful. I have always been able to do so with my Mom and my friend Amy, but I have not been able to do this with most others. I share this because I know there are thousands who are not able to communicate their needs, like me. I am fortunate that through FC I am able to connect with others.

I am going to be speaking tomorrow at a conference for recreational therapists. It is amazing to me that someone like me who is non-verbal is being given the chance to share my story and music with professionals. It is amazing to me because I have not been in the public view for most of my life. Only as someone who has been odd, or different. It is amazing to me that someone like me can be seen as having something to share with professionals. I am hoping that they hear what I have to say. I have my text prepared with lots of photos. I want them to see me- not Rett syndrome.I hope they hear the music I created and start to see others they work with, with new eyes. It is fun to have people interested in what I have to say. I am really eager for their questions. I will update you after tomorrow.

Karly

 

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