I had an amazing last few days. On Sunday I shared my writings with the group in our community. It was so respectful and I loved being there. I will post the video if we can figure out how to do that. My teacher read my poem about my Mom and my step-dad Gregg read my other two poems and my Mom read my story about my 23rd birthday. It was a great day because some of my closest friends were there.
Gregg reading "I Am"
My teacher Libbey Casey-Irwin read "In Honor of my Mom"
Love, Karly
A peaceful day with Beau. He was standing on a step to get behind me.
I am so content today. I am struggling with breatholding and hyperventilation today, so it’s not that kind of contentment, but I have had an amazing week. I was asked if I would sit on an advisory committee for an arts program for adults with disabilities in our community. It is called, Art St. Croix. I am so happy to be asked. I don’t know for sure how I can help, but I can give my insights into what I have experienced in being able to express myself through writing, composing and painting. It is so incredible that I have been asked because I don’t speak. I never expected being thought of as someone who could be helpful in this way. Here I am in my living room today, listening to our water bubbler, chewing on my bandana, breathing like Rett makes me do sometimes, and yet I am doing things that help my community and the world for Rett Syndrome. It makes me so content.
I have had a number of people leave messages for me on my blogpage today. It makes my heart so happy and made my Mom cry with joy. I know I am doing what I was created to do and that brings me peace. I was asked a while back by a Mom whose daughter was recently diagnosed with Rett at 14 years, if I would be able to help them raise peoples awareness of Rett Syndrome. The mothers’ got together and decided to find a way to help bring attention to Rett Syndrome. They asked people to write letters to Oprah, asking her if she would do a show. Researchers feel they are close to finding a way to reverse Rett Syndrome. They need more money to continue researching. The mothers hope Oprah can help with their mission. I was asked if I would write a message for Oprah because they are in contact with her people that help her. I did that this morning. I hope she hears what I have to say.
For those who are still struggling today and have Rett Syndrome, I’m sending you the message to hold on! There are many people who are trying to help, and I’m one of them. I’m trying to give hope to those who live without an audible voice yet.
Here’s a big hug for you. ((( : )))
Love, Karly
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.
Love, Karly
Riding Chester with my friends Amy, Bill and Laurie
Here are my four writings
I Am
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 contribute
I participate
I speak in ways others can hear
This is who I am
I am more than my body
Karly Wahlin
September 2009
My sister Leah and I by the St Croix River
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
Over lunch,
On our vacations
at the hospital gift shops or retirement homes
Love would be fair to the unlovable
The outcast
or folks who don’t fit in
We could get it easily
There would be no risk
No pain
No loss
No regret
Only the ability to make money to buy more love.
Karly Wahlin
September 2009
Amy and I have typed together for 12 years. I love her!
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
Karly Wahlin
October 2009
My Mom and me on my birthday talking with my family
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
Grandpa, Leah and I when I was one month old
Love, Karly
I am taking a writing class. We are focusing on poetry right now, so I thought I would write a poem about my grandpa. Here is my rough copy. After class today I will try and post my edited version.
Sending Grandpa Home
I came to earth with challenges you had never seen
I’ve lived a life apart from yours
I understood what you said to me but did not answer with language you received
You felt pity, I felt the same
I wanted a Grandpa who could play
In your final months I saw a change
I felt your love
I saw your pain
You tried to understand
You heard my typing and questioned me about who I am
I know you saw my chair, but it no longer scared
You saw me
We could be real
We saw each others eyes
I will see you soon Grandpa
I will see you soon
Karly W
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
I sit in the shadows of the Blackhills and all their beauty.
I am in awe
For me to see the hills has been a great feat
You see, I depend on the legs and backs of many people to enjoy this magnificent place,
I am not alone here.
If I was able, I would drive through the hills, and feed the burros that came up to my car. I would take pictures of buffalo as they came near me and I would run up and down the hills, shouting with joy!
I love my trip, and I love my family.
Thanks to them I have done the impossible!
Writing My Poem
September 16, 2008
I am so amazed at what can happen when people get together and combine their ideas. I am so excited about a group my mom heard about in Ohio who are doing some amazing art. I think it can happen here in our state too. The group is called Passionworks. They have found a way for adults who have challenges and artists to work together to create beautiful art. It has helped all of them have a better life. It has made them noticed in their community. They are respected for their talents. It is beautiful because I know most of the adults were ignored before they found their gifts.
I want to be noticed for the gifts I have, not for the things that are considered wrong with me. It is hard to have people notice me for all the wrong reasons. It is something those of us with visible disabilities want to see changed. If everyone who had some personal challenge be visible to the world, it would change how we interact with each other. It is incredible that adults and children stare at me. I see myself as extrordinary and others as ordinary!
I am really not all that different from others.
I laugh, I love, I eat, I eagerly wait to see friends, I feel sad, I hurt sometimes, I have great days and hard days.
Karly
