Archive for November, 2008

Thanks for your Kindness

November 26, 2008 · Filed under Disability Awareness, Rett Syndrome · Tagged ,

I can’t begin to tell you how much your kindness and interest in what I have to say, has changed my life. I didn’t know about blogs until this March, when one of my biggest fans, Sandy, told me I should start one of my own. It has been a great boost to my morale to have so many people enouraging me and telling me to keep sharing my lifes story. I have not advertised my blog page to many, other than my closest friends, and yet I have almost 13,000 hits to my site as of today.

I know that my life is not easy, and it is a hard life for my family, but I am so blessed today. I am living my life the best way I can. To be honest with you, I have been very sick lately. I don’t know what it is, but I don’t feel very energetic. My tests all come back normal, but I am not well, so it has been a difficult month for my parents and I .

I am looking forward to Thanksgiving tomorrow. I am praying that I won’t have a seizure tonight so I can enjoy our guests. We have twelve people coming and I love every one of them. We had so much fun last year and I anticipate the same this time. I hope everyone has friends and family with them tomorrow, and that it is a day to be thankful.

Love, Karly

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My Latest Song

November 21, 2008 · Filed under Companion Horse, Disability Awareness, Music & Art, piano compositions, Rett Syndrome

I am sitting here with my Mom this morning trying to find the words to share what I am thinking. I am feeling much better. I have been having a tough time with seizures these past ten days. Today, I feel great!

I am so happy because we finished my latest song yesterday. The notes were done but the tempo and other details needed to be finished. I am so excited about my latest piece, because it is so different than my other songs. I titled it “My Pony, My Beau”. It is a song that came to me in the Fall of 2007 while I was in the paddock with Beau. He was being silly and playful. It was a fun day.

I remembered the song for a long time until Karen and I were able to complete it. It took us 12 months to finish. I was so eager to get it out because it was a complicated song. I held it in my head for it to be shared as I heard it in 2007. I am so eager to share it with everyone on December 6th at a community event. I was able to share it with my sister Leah last weeknd when she was home from Ohio. It was the first time my Mom, Gregg and Dad heard it too.

I will put it on my site after I share it on December 6th. I think it will be a fun day.

I love to share my songs because people can hear my heart through my music.

Karly

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My First Election for President

November 7, 2008 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome · Tagged ,

This has been a great week for the world. The President that was elected was the one I voted for. I did an absentee ballot, which is a good thing because I was too sick on election day to go vote. I’m excited about Barack Obama because I think he will have an understanding of the challenges many of us face in this country.

I don’t know much about politics, but I know that my life is different today than it was a few years ago. For those of us who are not wealthy and are dependent on our government to help meet our daily needs, when we can’t do it ourselves, this is a great week. It seems the funding for some incredible opportunities for people with disabilities has stopped. It may have anyway, but I feel more hopeful today because I have heard the president during his campaign, and how respectful he was, and I feel hopeful for the world. I like the way he listens to people and hears their story. I hope that he is able to do that for people like me, who are not a loud voice. I know he knows what it is like to be judged by his body, instead of who he is as a man. In that way, he understands.

It helps all of us to be united, if we hear each other, because we are not that different. I think anyone who has faced prejudice knows what it’s like for others who face it because of something they cannot control. I heard from a wonderful woman in Michigan who shared with me how sad and difficult her life is because she is noticed and judged and watched and questioned wherever she goes. It is not because she has an obvious disability, it is because she “lives in a black body”. I never thought about it before, but those who live in bodies that stand out in the crowd, understand each other. In her case she works in a place that is mostly white. I live in a body that is noticed because of it’s challenges, but we understand each other.

I want to give hugs to everyone today who has felt isoltated overlooked ignored, underprivileged or judged because of the body they came to this world in. I love this day for the hope it brings to our world.

love, karly

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