I want to tell you today that I have so much hope for my life. I remember when I was younger and how hard my life was, and how much pain was in, and how sad I was. Nothing seemed hopeful. Before I could type I had no way to let those around me know what I needed. It was so hard because I was the same person inside then, that I am now. I have written many things on my blog about how difficult that period of time was in my life. I don’t want to focus on that today. The only thing I want to tell you is that girls with Rett Syndrome are waiting to be freed. Of the girls I know who live with Rett we all are very different in our interests and gifts, but we all are very gentle and have giving hearts. We are waiting for someone to believe in us, to give us tasks that are meaningful, that even though their bodies are giving them lots of trouble their minds are capable.
I want to share with you some of the writings I have submitted for my event in November. It is a community event where adults who live with some type of disability, are able to share their writings and music. This is my third year. I submitted four pieces and all four were selected. My latest song is not ready to be played yet, but it will be when we go to the recording studio.
I am so happy today. I am sending a big hug to all my Rett friends. Don’t give up.
Here are my four writings
In the quiet of my heart I am slow
I breathe deeply
I sit quietly
I think freely
I don’t struggle
I love deeply
I speak in ways others can hear
This is who I am
I am more than my body
If we Could Buy Some Love
If we could buy some love our world would change
It wouldn’t cost us much
There would be no risk, we would feel no pain
We would give freely
Our hearts would not be harmed,
If we could buy some love, we would be free
Our minds would be obsessed with making it fair, our hearts need no involvement.
No one would go unnoticed
Stands could be set up to buy love conveniently
On our errands
Coming home from school
On our vacations
at the hospital gift shops or retirement homes
Love would be fair to the unlovable
or folks who don’t fit in
We could get it easily
There would be no risk
Only the ability to make money to buy more love.
In Honor of my Mom
When I came to this earth my Mother was 24 years old
I was welcomed into her loving heart
There was no sign, no labels, no obvious reasons,
She took time with me
She gave me opportunities to develop
She heard my cries, long and full of pain
It is her heart full of valor that believed the best for me;
That didn’t stop at the labels that limited me,
but continues to move slowly through open doors, that ever so slowly changes the minds, hearts and ideas of others
The world will be different for Rett girls because my Mother believed in me, and in doing so has given hope to my silent friends
I’m Ready for Life to Begin
July 4th 2008
I’m sitting here on the deck with my Mom and Stepdad trying to calm down. I’m really excited because we are going on a paddleboat ride on the beautiful St Croix River. I have sat on the rivers edge many times and watched the paddleboats go by. It is the first time I will be one of the passengers. The ride is a gift from Mom and Gregg for my 23rd birthday!
If I knew what I know now, when I was a little girl, my birthdays would have been happier occasions for me. I didn’t know my life could be a gift to others, especially to those who are struggling like me in a silent body, to be understood. If I had known that my lifes’ story could bring an understanding to others, I would have felt more joy about being alive. I feel so joyful today, that there are those whose lives are a little better because I have put words to their experience. What I have shared, even though hard to hear, has been kindly received.
I don’t think I would have been so fortunate if my mom and stepdad wouldn’t have kept encouraging me to write, and my good friend Sandy who has been one of my greatest fans. I share this today, because as I sit here, I am struggling to breathe.
Part of my condition of Rett is disordered breathing. Unlike most people who don’t even think about breathing, I think about it every waking moment. My body doesn’t breath on its’ own very easily. I turn blue so often during the day that it is a normal color for me. My hands are a deep purple right now. I’m ready to breathe normal. I wish I could. It’s one of the things that keep me from enjoying my favorite activities. I am unable to control it, but my body stops breathing every couple of minutes. Sometimes I breathe normally in seconds, other times I hold my breath until I pass out. It is not scary for me anymore, but it makes others around me anxious and uncomfortable. ‘It is hard to see someone turn blue ,’they say. I see my hands turn blue, but they go back to pink. When I start breathing again, I hyperventilate because my body is trying to gain more oxygen. I cannot control it: my arms flail and my legs go stiff, and I look frightened.
The reason I share this today is because we are going out on such an awesome day into the community, where I’m noticed not for being a wonderful young woman turning 23, but as someone who has a problem, and who makes their day uncomfortable.
I love life and I want to enjoy myself like everyone else. So I will try to ignore their discomfort, but I am very aware of it. It makes me even more uncomfortable. I want them to know that I am NOT who they think I am. I am out having a great birthday gift with my Mom and Gregg! It makes my life valuable to know that they are wanting to be with me in these situations helping me have a blessed life. It’s not an easy life, but it is a great life.
I speak for many who are experiencing this around the world. I can only imagine what is happening in their lives today. I want to give them a huge hug.
Karly with love