I Am Here


Orange is my favorite color.



I haven’t been writing much this time of year.  I enjoy being outdoors and I love the leaves that are turning many beautiful colors.  I can’t see them unless I am close but I can see their colors.  My Mom and I have been going on drives and using my Flip Video camera to record the leaves changing colors.  It’s been great to watch those videos on my new computer.

One of the things that I love is being near water.  It makes me feel so peaceful.  I don’t hold my breath or hyperventilate as much near water.  I live in a state where there are thousands of lakes and rivers and ponds, so I can be close to water in the warm months.  But when it is cold I can’t be outside, because my body can’t handle the cold.  I can’t stay warm then.  We decided this summer to video water so I could watch it during the winter.  My Mom has gotten about 12 different videos for me to watch of water.  Some of it is calm and peaceful and others are waterfalls that I need on days when I am hyper.

I have had a hard time with my anxiety.  I feel so restless.  In the Rettgirl brochure they talk about Rett Syndrome being a combination of five disorders.  Parkinson’s Disease, Epilepsy, Autism, Cerebral Palsy and Anxiety Disorder.  Many days I feel calm, but lately I have felt so anxious that I can’t relax.  I sleep good, but I feel so hyper in my body and mind during the day.  I hate days that feel like that, because I don’t feel like writing, or being around people.  I even have shredded my bandanas with teeth.  I feel so frustrated that I can’t just calm down.  We have done many things that have become difficult to manage like exercising in my walker, and standing an hour everyday, and going for drives and being outside listening to calming music and being in my swing.  I want it to stop because it’s not me in my mind, it’s what my body does that I can’t help.  If there was a cure for this part of Rett Syndrome I would be very happy.

Here are some pictures of our state in the Fall.


On a road near our house



My Mom says this bridge reminds her of England...it's near our house too



Our friend Theresa helped push my chair to the bridge. We had a picnic by the waterfall.



This bush is right beside our deck.



Sitting on the dock by one of my favorite lakes. Being near water calms me.



This is so beautiful! I can see it on my computer after my Mom takes the picture.



Love, Karly


3 Responses so far »

  1. 1

    Bethany Crossley said,

    That is so beautiful! I love those pictures and I understand EXACTLY that feeling of being restless and of wanting to enjoy the calm and the beauty of nature and to accomplish things. I miss you!

  2. 2

    Andrea said,

    Dear Carly, I’m mother of my Rett doughter Tony (three y.o). She does not know letters so far, we communicate with pictures. No one of our family has had doubts, that Tony is clear mind and able to talk with the others. I understand your unrest and tension inside your body, Thanks for your courage to present your feeleings here. Best wishes!!! From Czech republic, Europe.

  3. 3

    P said,

    That’s some awesome pics, thanks for sharing! Water also calms me, I don’t know why. I’ve been really enjoying your blog.

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