More Memories


The first picture we have of me wringing my hands


Me with a book. Sometimes I could get my hands to work for a short while.

I have been thinking some more about my memories from my childhood.  I was so tired after I wrote my last memory blog, that I slept for a long time that night.  It makes me glad for where I am now in my life, but it is hard to remember the life I had before.  It wasn’t because of my family. They loved me and most of them believed in me, but it was schools and doctors and therapists and people in general that have given me the most sadness. 

I couldn’t imagine doing what I am now even five years ago, so I want to write about my child days because there are many other girls with Rett who can’t imagine their life being worth living sometimes.  I haven’t always had so many wonderful things happening in my life as I do now, but it’s because of the willingness of my family, especially my Mom to keep on trying, to keep on believing in me, that things changed. I have said so many prayers asking for a way to help others, a way that was believable. 


My Mom says I always looked closely at letters and numbers from the time I was a small baby.

I want to write today about how I was trying to communicate with others before my keyboard.  I had no method to communicate until I was ten.  My Mom saw things in me that made her believe I was intelligent and that I needed a way to express myself, but she couldn’t get the schools to agree.  Since they had all the speech therapists they made many decisions.  They made decisions that kept me locked up inside my body.  I went to see a team of therapists to work on a communication system for me before I was ten.  We had over 20 visits at a hospital.  They were trying to help me but because Rett Syndrome has a mind of its own, I couldn’t show them each time that I went there, that I could independently touch buttons or a keyboard or a screen.  On my good days when my movement was more controlled, I could do really well, but they needed more proof for us to get the money to buy the equipment.  Even with my best days, it was really hard for me to touch the screen just right.  

I was screaming inside. I knew what they were thinking.  I heard what they said.  I gave them my best efforts to show them I was in here, but it didn’t happen.  Even after all the appointments and all the trials I still didn’t have anything I could use.  I know the therapist was trying which was different than what I got at school, but I felt so lost.  This was before I had a diagnosis of Rett Syndrome.  I doubt that it would have helped me for them to know what I have. I have written about this on my communication page. 


My first walker. I couldn't walk much but I could stand for a while.


My Aunt Martha was my first caregiver starting at age 5. Here we are together at 6 years

I just wanted to say here that if others had believed in my intellect when they did their evaluations, I would have felt more calm.  But because I was stressed hearing what they were saying and how they assumed I was a small child in my mind, it made me want to cry. Instead of being free I was stuck trying to show them I was capable, and that it was just my body that was not working for me. 

When I am stressed I do more chewing, so my hands are constantly grabbing for my bandana or whatever I can reach to chew on, and I hyperventilate more.  It’s hard to focus when I’m hyperventilating.  It’s not something I’ve been able to control.  Just thinking about those days is making me do more chewing, drumming and hyperventilating as I write this.  It’s hard for me to type without lots of stopping.  I don’t like it!!  It’s hard for my mom or any other person trying to facilitate my typing.  The more stressed I get, the more I hold my breath, so I am going to quit today.  But I wanted to share this memory because I know other people who have Rett Syndrome struggle with these things too.


My sister Leah and I with my first keyboard in December 1995


It was a great Thanksgiving. I had just been given a way to communicate that worked for me. I was thrilled. My life changed in one day!

I will write more later.

Love, Karly




This was at my grandparents cabin when I was 18 months old.



5 Responses so far »

  1. 1

    Brian said,

    Thanks for posting the old photos Karly, they are awesome!

  2. 2

    mj said,’ve really been bloggin alot Karly! I hope you’re feeling better…one day at a time!

  3. 3

    Lynn said,

    Thanks for sharing, Karly. Especially since it is a stressful thing to do. It encourages me to believe in Lily.

  4. 4

    Michelle Wahlin said,

    Thank you so much for sharing, Karly. I love understanding you better, and am thankful that you have the courage to share your feelings and your experiences.

    Michelle (Ryan’s wife)

  5. 5

    Heather said,

    You are a very inspiring young woman! Thank you for sharing your insights with us. My daughter Hannah is 4 and has Rett. We are getting ready to trial an eye gaze communication devise for her and have very high hopes. We can’t wait to hear what she has to say! Please keep sharing with the world! You are making a huge difference in the world.

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