Peace, Contentment and Hope

 
 

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A peaceful day with Beau. He was standing on a step to get behind me.

I am so content today.  I am struggling with breatholding and hyperventilation today, so it’s not that kind of contentment, but I have had an amazing week.  I was asked if I would sit on an advisory committee for an arts program for adults with disabilities in our community.  It is called, Art St. Croix.  I am so happy to be asked. I don’t know for sure how I can help, but I can give my insights into what I have experienced in being able to express myself through writing, composing and painting.  It is so incredible that I have been asked because I don’t speak.  I never expected being thought of as someone who could be helpful in this way.  Here I am in my living room today, listening to our water bubbler, chewing on my bandana, breathing like Rett makes me do sometimes, and yet I am doing things that help my community and the world for Rett Syndrome.  It makes me so content. 

 I have had a number of people leave messages for me on my blogpage today.  It makes my heart so happy and made my Mom cry with joy.  I know I am doing what I was created to do and that brings me peace.  I was asked a while back by a Mom whose daughter was recently diagnosed with Rett at 14 years, if I would be able to help them raise peoples awareness of Rett Syndrome.  The mothers’ got together and decided to find a way to help bring attention to Rett Syndrome.  They asked people to write letters to Oprah, asking her if she would do a show.  Researchers feel they are close to finding a way to reverse Rett Syndrome.  They need more money to continue researching.  The mothers hope Oprah can help with their mission. I was asked if I would write a message for Oprah because they are in contact with her people that help her.  I did that this morning.  I hope she hears what I have to say. 

 For those who are still struggling today and have Rett Syndrome, I’m sending you the message to hold on!  There are many people who are trying to help, and I’m one of them.  I’m trying to give hope to those who live without an audible voice yet. 

Here’s a big hug for you. ((( : )))

Love, Karly

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3 Responses so far »

  1. 1

    Susan said,

    Thank you. You are beautiful! My cousin’s daughter was diagnosed with Retts two years ago at age three. She is in therapy and has become a bit more verbal. She will be six in January. You are quite an inspiration for her, me and the rest of our family! The cure is around the corner. We just need some help with the bend in the road. You are thoughtful writing to Oprah for all the girls who are challenged by Retts. Oprah has people buying whatever book she likes. With influence like that, she is SURE to spread Retts education and awareness. Thanks again for all you do. -Susan

  2. 2

    Uninvoked said,

    Beau looks like he’s contemplating the tastiness of your shirt. My horse does that sometimes too. It’s sooo cute ❤

    Hope Oprah does that show. Let us know what she says.

  3. 3

    Jennifer said,

    Thank you so much for writing this blog. Your words brought tears to my eyes. They have helped me see so much I didn’t see, and I have shared this blog with all of the people who know my daughter.

    My daughter, Ciara, is 6, and has Rett Syndrome. I hope that one day she too may have a voice. She cries so much in frustration, and I want to give her what she wants. We’re learning to work together to figure out what is needed. She’s able to communicate using her eyes, and pointing to objects or pictures.

    I have been reading your words to her. She’s been smiling while listening. 🙂


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