Archive for May, 2009

My Friend Grace

It is a beautiful sunny morning here.  We love them, and I am outside writing this blog.  My Mom has our small recorder so while I’m typing she’s saying my words into the recorder. 

I want to congratulate my friend Tara Reddington in Rhode Island for the fund raiser they did yesterday to support Rett research.  They raised a lot of money to help find a cure for Rett Syndrome.  Their daughter Grace, is a beautiful young girl who has very severe symptoms related to Rett. She has been in the hospital a lot.  Tara has been so kind to me, and respectful and excited to hear of my experience in living in a body that has Rett Syndrome.  Please check out their blogpage:  http://www.theraceforgrace.com/

I am aware that I am fortunate.  I struggle with many things related to Rett Syndrome, but there are girls and women who are so much worse off than me.  I am recovering from another bladder infection and the resulting symptoms of many small seizures and exhaustion.  If I could prevent myself from getting sick, and all the trouble that comes with it, I would be so grateful.  We are working hard to stay healthy.  I am writing a lot for the camp that I am speaking at this summer.  I have most of my talks ready.  We were invited to the camp directors house yesterday.  They made a beautiful day for us. 

Here are some current pictures of me walking with Gregg, and me with Beau on our new patio.

Gregg and I walking

Beau and Karly on patio

Love, Karly

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My Feelings about Wearing Sunglasses

I am sitting on our new patio with the table that Mom and I found.  It works great because my wheelchair can go right up to the table.  I am typing with my keyboard on the table.  It is a sunny morning.  Beau is getting his hooves trimmed.

 I wanted to share that I am wearing sunglasses.  I usually can’t stand to have them on my face, but today it is great.  I love how they help my eyes.  Here’s a picture of me wearing them.

It helped me in the sun to wear the sunglasses

It helped me in the sun to wear the sunglasses

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I don’t know if other Rett girls have the same struggle I do with glasses on their face, but it has always been something I can hardly tolerate.  When I was very young I wore eyeglasses because my vision is so poor.  But by the time I was five I couldn’t keep them on my face for more than five seconds.  They drove me crazy.  They felt so ticklish on my face that I couldn’t keep them on.  Today is the first day that I’ve been able to wear sunglasses.  Last summer we discovered that a visor is ok and I can usually keep it on for a while before I get restless.  

Our new patio is great for my wheelchair

Our new patio is great for my wheelchair

Karly

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Physical Pain In My Body

I wrote about the struggles I was having for two weeks and how it affected my body on My Rett Body.

Karly

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My Mother

It was a day when God chose a mother for me.  He knew my life would be full of challenges, and looked for a mother who could see past my limitations and see my heart. 

 It was a day when I came into this world,  full of the promise of my new life. 

 It was a day when my Mother knew that our lives would be forever intertwined, because my needs were so great. 

 It was a day, when through sleepless nights, she continued to love me, and determined how to care for me.

 It was a day when we read of a man, who had no audible voice, and learned how he communicated.

 It was a day full of hope when we discovered that same voice for me.

 It was many days since my voice came to be heard, with many challenges in our way.

 But for today, this day, I honor my Mom for all the ways she loves me and carries the heaviness of my life in her heart, and thinks of my needs before her own… seeing the best in me… believing in me when most others haven’t… giving my life the necessary time so I can be all that God created me to be.  That is my Mom and her gift to me. I honor her and love her.

 Karly

 

 

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