Archive for November, 2009

Music Frees Me


My Songs


We are talking with many people to help get my CD ready to record.  There are a lot of things to figure out. I’m not involved in most of those things, like legal stuff, but I have a lot of joy in my heart because it looks like this could happen very soon.  Many great people are so excited for me and encouraging me to continue. 

I wrote a message to the group who we will be sending a message to for giving us the money to record my CD.  I titled it “My Vision for my Music.” When I first composed in 2000 with my music therapist in school, I never would have dreamed that it would be anything that others would enjoy hearing.  I was just so very glad to have someone believe in me enough that she would take the time to get my music out of me.  No one that worked with me before that time knew that I was capable of doing more than strumming a guitar or trying to tap a drum.  Those therapy sessions were awkward and difficult.  It didn’t allow me any way to express myself.  I know that other girls with Rett have music therapists too.  I hope that it helps them more than it did me.  I was so frustrated because I wanted to make music.  I didn’t want to have the sounds I made sound like a babies attempt at music.  I give my teacher Karen Bohnert respect and honor, because she changed my life by her belief in me.  I hope my CD gives her joy too.  She was there with me every note.  We struggle to get the song I hear in my head just exactly right.  I can’t imagine what my life would be without the freedom to share my songs. 

Love, Karly

I was asked to be the keynote speaker with Karen for a Recreational Therapy Conference

Karen shared how she and I work together

I wrote my message and had my Mom read it at the conference

It was a great day for everyone. They saw people like me differently.

This is what I wrote for the CCP Foundation board.  They are meeting next week.  I am praying for their support.  They have expressed a lot of interest in helping me. 

 To the CCP Foundation

I haven’t lived most of my life with a voice that others can hear.  I have never spoken in my life.  My disorder of Rett Syndrome kept me from ever speaking, even as a young child.  My years in school were painful.  I was not seen as a young person who had a physical disorder, but as someone who also had a mental disorder.  The opportunities that were offered to me were so limiting.  I wanted to tell them that I was not mentally challenged, but I couldn’t.  They didn’t believe I had any capacity for determining what I wanted to do in my life, so they gave me opportunities to remove my hat, and to show that I knew my colors and that I could sort objects.  I wanted to die.  I was so sad and depressed for the first ten years of my life.  The only person who really believed in me was my Mom.  She knew that their understanding of me was wrong, but she couldn’t figure out how to let me out of my body.  It was a difficult time for all of us. 

 It changed completely when we discovered facilitated communication when I was ten.  My Mom read of a man who was thought to have low intelligence for 36 years of his life.  He lived in an institution.  His parents brought him a typewriter when he was 36 and they discovered that if they held his arm to stop some of his uncontrolled movements that he could type.  He wrote a book.  I remember that story.  I remember where I was sitting when my Mom read it to me.  It changed my life.  It changed my hope. I was able to share simple things at the beginning, but they were so big to my family. I told them that I loved them.  I told them that my head hurt.  I told them about things I could never share.  It has been many years since then.  I now can type very fast, but I never dreamed that my life could be any bigger than my small group of friends and family. 

 In 2000 my music therapist at school was working with me and learned that my parents and my sister were all musical.  She decided that maybe I had music that I wanted to share.  She decided that we could compose together. She came up with a way for me to communicate the songs that are inside of me.  It took us many months but I created a song that I called Ever After.  When people heard it they were so amazed, because I was the girl who had nothing to say.  Now, my music not only gave me a voice, it touched their hearts.  I was so excited, because I became seen and respected.  My teacher Karen  Bohnert and I have worked together since then on many other songs.  I hear the songs that are given to me by God, and I hold them in my heart until I have them all out of me on paper.  It takes about a year for each one. I have shared my music with many people now, and they all ask me if they can buy a CD.  I never dreamed that my music could help people see that those of us who cannot speak are not without intelligence. 

 There is so little understanding in this world for people who live in bodies like mine.  I have given messages to groups of professionals as well as other adults who live with illnesses and disorders.  They usually cry. It has changed my life to be seen.  Much of my life I struggle to be healthy.  I often have very little energy and I am not able to work a regular job because my hands are not able to do things independently.  I am confident that if I had my music recorded, that it would allow me to help change the minds and hearts of others, as well as give me a way to earn money.  If I had the documentary that the woman who would like to be the CD producer is recommending it would give me another way to share my story. I get very anxious sometimes when I have an event coming up and my health is not stable.  I can’t tell until the day if I can be there.  So if people are counting on me it makes me worried.  If I had my documentary I could speak to more people whether I could be there or not.  It will also tell my story.  The part of my story that my music alone cannot. 

 If I had both my CD and documentary it would change my life, and I am confident that it will change the understanding that this world has for girls with Rett Syndrome as well as people who have high physical needs but are intelligent.  We need to become visible. Our gifts and talents are crying out to be understood and valued.  I believe that all people are sent to this earth with gifts that need to be expressed.  If they aren’t expressed they become painful inside of us. I hope you consider my request for the money to help make this world a better place through the talents I was created to share. 


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My CD is Coming Alive!

Barbara, Karen and me at our first meeting together

I am so excited because yesterday I met with Barbara McAfee, my music teacher, my friends Margie and Karen and my parents. Barbara is a musician who speaks at conferences and is a piano player and songwriter.  She has 6 CD’s and says each one of them is a child to her.  She was inspiring.  One of her goals is to help women find their voice.  When she heard about me she was very excited and wants to help my music get shared with the world.  She travels a lot and talks to people everywhere.  Places that I will never go. She grew up in the town where we live and used to spend a lot of time at the library where I love to go and write.  She uses the studio that we went to a few weeks ago for her CD’s.

 I loved the ideas she shared.  One of them was to create a documentary of the recording and a little more of my story, because my strength is often low, and to have to go to events where I am suppose to speak is really hard for me.  I get overwhelmed by large groups and lots of sounds, so she thought that having my documentary might make that easier for me.  She knows a lot of people that she thinks will be very happy to help with this.  So we are moving ahead, and I am so content in my heart.

There is something that I want to share about my music and how I feel about giving it to others to enjoy.  I started composing with my teacher Karen Bohnert nine years ago, because she knew that there was a lot of music in my family. My Mom, my sister and my Dad are all very musical.  I write every note with Karen.  My family is not involved in any part of my composing.  I have titled the songs with my Mom’s help in facilitating, but beyond that they rarely hear my song until it is completed.   Karen has worked so hard to make my songs sound exactly like I heard them when they were given to me by God.  He makes them so sweet and memorable for me that I hold them until it is done composing.  The one we are finishing now has taken over a year. 

I do not share my songs to become famous.  I share them because people are so inspired by them.  My hope is that when people hear what I have composed that they will be inspired to discover what it is that they were created to do on this earth.  I feel that everyone has a special gift that God created in them.  If they don’t share it with others we all lose out.  Everyone has something unique to offer this world.  Mine happens to be music and I feel so great when I can share it.  I will keep everyone informed through my blog about what is happening with my CD’s.  It sounds like we might be able to start recording in January. My sister Leah and I will be together in a couple of weeks.  She will be working on her Viola part for two of the songs.  I love how this is happening and I feel so alive, even when I am struggling like I have been in my body this past week.  I hope all my Rett friends will feel my love when they hear my songs. 

 With great love,


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In Your Words or Theirs…

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


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Peace, Contentment and Hope



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

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Having Big Dreams

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




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My Year of Joy

I have been thinking about all of the things that have happened in my life this year. If I had imagined how much our lives would change in one year it would have been too big of a dream.  I am so glad for all the ways I have been respected and valued. My courage to share my story has given me so many opportunities that I never dreamed about.  I am sitting here in our library with me Mom writing this message.  This year started with a lot of discouragement and frustration.  The person I was counting on for my daily activities, left without even saying good-bye, it was a time of great difficulty for our family. But because she did that, my Mom is now home with me and I have the freedom to write and share my thoughts everyday that I am able.  I know that God has given me many opportunities that I never could have had without my Mom’s support.  I was able to type with my caregiver who left, so it was painful to have one less person to communicate with, but God has changed my heart about her. 

 I want to talk about some of the things that have happened this year because we were able to be together more and I can communicate freely with my Mom.  I have written for my adult writing class whenever I am able to do so.  It was hard when my Mom went to work during the day and I could only write in the early mornings before she left, or in the late afternoon when she came home.  Sometimes I wasn’t ready to type during those times, so it was frustrating for me. Because I was able to write I was prepared for my class. I could write my blog whenever I was ready, and I prepared my talks for camp for three months before it started.  I wrote lots of cards and emails.  About 30,000 people have read my blog this year.  I could not have imagined that before this year. We went to Duluth on a great family vacation and worked on my documentary.  It is not finished but it’s getting closer.  Now I am starting to focus on my CD and getting it recorded.

1st meeting at studio

1st Meeting at Wild Sound studio

My visit to the studio last week was wonderful.  Matthew and Gerard are so respectful and excited to help me share my songs with the world.  They have talked to a woman who they want to produce my CD.  She is a musician who has some of her own CD’s and is very excited to help me share my songs.  I have asked my sister Leah, to record with me so her parts are for viola.  She and I have not done this before so it’s very exciting for me.  Matthew was very respectful of me and wants to make sure that this is done exactly as I want to have it when it is finished.  They are going to film the recording and create a documentary of the process.  They said my story is very important to share and they want to create this film so others can see more of who I am.  This is so wonderful for me.  I have worked so hard to share the songs that I have been given.  They are not my songs. They are songs given to me by God.  It is not hard to share something that God has given.  It is inspiring to me when I get a new song but it takes so much time to finish it.  The one I am working on now has taken over a year and it is not done yet.  But God gives me a good memory so I can keep the details in my head until I am able to share them with Karen, my music teacher.  It is hard work for her and I, but I know that I am suppose to share the gifts that God gave to me.  I am eager to do that now. I have more courage this year than I ever have before. It inspires me to continue writing about my life because I know that even if it only helps a few girls with Rett that I have done what I am suppose to do.  Thanks for the kind messages you send to me.  It helps me to know that I can give other girls I will never meet some hope for their lives. 

 Love, Karly


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