Archive for January, 2011

My Friend and I

January 30, 2011 · Filed under Companion Horse, Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

We played a card game.

I had a good friend to my house yesterday.  We have known each other for many years.  We were in a dance class together and we were in the same class at school.  I’m so glad she was able to come over.  We hardly ever see each other anymore because she is in a day program and I am at home or in the community, so I don’t get to see her.  We like some of the same things. We both have horses so when we got done watching a movie we had Beau come in the house for a visit.  He loves to be inside and was trying to show us his tricks.  He did really good.  It was fun to have Sonia see him.

Here are some pictures of our day.

Beau lifts his left leg and then bows.

Beau wearing Sonia's scarf

Beau next to my chair at the table.Love, Karly

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Rett Family on The View

January 27, 2011 · Filed under Rett Syndrome, Understanding Rett Syndrome

My Mom and I just found out that there is a cameraman that works on The View, a TV show, whose daughter was just diagnosed with Rett Syndrome.  They are going to share their story on The View tomorrow morning, on January 28th.  I will be watching it with my mom.  I hope you can see it too!!

I am excited right now because I am going to send him one of my CD’s for their daughter.  I hope we can find his address.

Love, Karly

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Waiting for Summer!

January 27, 2011 · Filed under Composing for piano, Disability Awareness, Music & Art, piano compositions, Poetry, Understanding Rett Syndrome

It has been a long time since I have written.  I have been sick this month with bronchitis and I have not gotten healthy very fast.  I am frustrated because I love to be active and I am too tired and weak to go places.  I’m sick of Dr appointments being my only outing.  I feel better today, but I don’t have a lot of energy.

I love this garden fairy on our patio

Sunrise out my bedroom window

 

I wanted to let everyone know that I am listening to a lot of books.  I am in a book discussion group for the camp I speak at, online.  It is The Land Between.  I like it because it’s an honest book about how hard life is when we are just waiting for good things to happen.  I know there are many people who have much worse situations than I do, so I am glad for my life and my family.  But it is hard to have so little happening each day because of my health.

My Mom and I want to go someplace warm with Gregg each winter but it’s too hard to do that.  Maybe take a long road trip.  It isn’t easy for me ot travel without help so it’s a good dream, but I would love it if we had a motorhome with a lift for my chair.  We would leave today!!  It would be such a good thing to be by water and have sun on my face again.

Bloom from the vine on our patio-it helps me to remember

 

I am trying to listen to my heart and know that I will be able to get out soon.  I could use some encouragement today.  I have an appointment today with Karen, my music therapist.  I am working on another song.  It has taken a lot of effort to get it out, but I feel really excited about it.  I have been listening to my CD and trying to not forget my poems….I am More Than my Body.

Here is my song, Ever After with my poem I AM, read by my sister Leah. 10 Track 10

It was one year ago tomorrow that we went to the recording studio to begin recording my songs.

I hope you are well today.

Love, Karly

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