My Music

My first song

My first song

This is my piano music.  It is played by my friend and music therapist Karen Bohnert.

My hands won’t allow me to play my songs, but the notes are all mine. It takes me about a year to complete each song. I have completed eight songs since I began composing in 2000. I will add a new song when I am able. My Dad helps me put my songs here.

To hear some of my songs Click Here to Listen

Karen wrote this information so you would know how I compose my songs with her.


Karly’s Composing Process

A composer hears melodies and harmonies in their head, then communicates them either by playing them or writing them down for others to play. Like all composers, Karly composes music in her head; but it gets tricky when she tries to share her music with others because she is not able to write them down or play them herself.

That’s where the choice cards come in.  A Music Therapist (a trained professional who uses music to achieve therapeutic goals) presents Karly with choices on index cards, one choice per card, and Karly is able to pick up the one that she wants.  When starting a new song, the choices might have to do with which key she wants the piece to be in, what the time signature will be and things of that nature.  Once the first note is selected, then Karly is given the choice of three cards: “up,” “down” and “stay the same.”  If she picks “up” or “down,” the next choice is whether it moves by skip or step.  If she picks “step,” the note will be the next one in the scale.  If she picks “skip,” she is given the choice of different intervals (they are played for her), and she selects the one she wants. So it can take up to three choices just to communicate the pitch of one note—and there is so much more after that!

After selecting eight to twelve notes, Karly has to communicate the duration of these notes (rhythm), one note at a time, again using choice cards.  Choosing harmony, or chords, comes next, then accompaniment patterns and any changes in those patterns.  The piece is finished after things like tempo, dynamics, articulation and phrasing have been decided.

It is a very long and arduous process for Karly taking approximately a year to complete each melody.   Due to Rett Syndrome, her breathing issues, health and energy levels all affect her ability to focus on the task at hand, but Karly does not let any of this stop her.  She composes in spite of the immense effort and huge time commitment, producing music that is an inspiration to all, and a testament to the abilities that lie within all people with disabilities.

Karen L. Bohnert        

Music Therapist-Board Certified



January 28, 2010

On our way to the studio. It was a cold, winters day.

 It took about an hour to get to Wild Sound Studio.

 It was wonderful.  I couldn’t even hear the mistakes for the first hour because I was so happy.  This was the first time my music was played by professionals.  There were lots of tears in people’s eyes.  It was warm and inviting in the studio.  There was honor and respect and love.  I had so much joy.  Gregg and Leah are sleeping.  We are tired but happy.  We are going to listen to the CD Matthew sent home with us today before I go to bed.  There were six songs recorded today with one of my poems.  My Mom cried.

I am content.

Love, Karly

My Mom was at my side all day so I could give my opinion with my keyboard
Matthew owns the studio and was wonderful to me. Greg was my piano player. He made me feel so alive. Barbara is a true friend. She sees me.
I got to go into the studio when they were practicing. I feel so loved by Leah. She added so much beauty to my songs.

Karen was there. She helped them know exactly what she felt I wanted. She was with me every note of every song while I composed.  

Karen and Leah going over details

Recording Day 2

January 30, 2010

Amy was able to come to the studio. The school she teaches at is close to Wild Sound.
It is finished.  We had another great day yesterday.  It wasn’t until we got home yesterday that I felt exhausted, but we are so very happy.  I want to tell you that there were so many miracles that came together for this CD.  I was so sick all month and it didn’t seem possible, but the day before the studio time I started to feel better.  There were many great things said and done while we were in the studio.  We had so much love and support from many friends.  The team that helped my music sound amazing was respectful and kind and thoughtful to me. 

 If I could share one word, it would be hope.  It is what I feel, but I think, most of all, the people who have been involved in helping my music be heard feel hope too.  I am not any more amazing than the next person.  I did what I was asked to do.  I didn’t know when I started to compose with Karen ten years ago that my life would change dramatically.  I said yes to God and He has done the rest.  I would never have allowed myself to dream this big.  I could not have made this happen.  My mom and family could not have made this happen.  But because I said yes, this world is changing. 

 I hope it changes most of all for girls with Rett Syndrome.  We need to be seen as human beings who have capabilities, who have thoughts, who have hopes and dreams.  We are more than people who create great struggles for our families.  We are more than people who cost society money.  We are here to contribute in our own unique ways to this world.  I know that every person was created with something special and unique to them, but it’s only when we have the right support around us that these gifts can be shared.  Part of our struggle is being believed at all.  I get so sad for the girls who listen to their families speak of their disorder as devastating and awful and use words like suffering.  If that’s how we are seen by others, it’s hard to live a bigger life.

 Please check out a story that a reporter wrote about me in our local paper:

Click here

   I want to thank her here for making some changes to the story at my request.  One of them was she said that I suffered from Rett Syndrome.

I told her I live with Rett Syndrome.  I choose not to suffer.  I am who I am and I can’t change Rett Syndrome, but I choose to live.  I choose life every day even when I am sick like I have been most of this month.  I am glad for life.  While I am here I will do whatever I can to help others become more aware.  The girls with Rett Syndrome live the lives they are allowed by others to live.  It isn’t the life we would have chosen, but many wonderful things happened in my life and I am so very happy for them.  

Leah read two poems that I wrote for my CD. Everyone cried

During the first poem reading.

 Thanks to my family and my wonderful sister Leah I have been given a new voice in this world through my music.  I have not been an easy sibling to live with for Leah when she was young, so to have her involved in helping this dream of my music getting recorded come true is beyond words.  I love her so very much.  I couldn’t have done it without her.  She is so selfless.  Her viola makes my music sound the way I want it to.  I know you will love it.  I send you peace. 

  Love, Karly

Gregory Theisen made my music come alive


Leah going over the music before we left for the studio
Barbara McAfee and Karen Bohnert have made my heart very content. 
Barbara and I look alike!
I was in the studio during reherasal to make sure my songs were played exactly as I wanted them.

 The Week After

February 6. 2010 

This is my favorite. It doesn't show my movements.

 It has been a very wonderful and amazing time for me.  It was a week of many emails and responses to my blog.  It was fun to have Leah here until Sunday.  I love to spend time with her.  She added so much joy to the recording sessions.  To have her read my poems created a voice for me that I love. We have a rough copy of the CD and I want to tell you that it sounds exactly as I heard the songs when they came to me over the past ten years.  I composed them for piano because that is the instrument I heard, but to have Leah’s viola playing was perfect.  She added so much richness to the piano parts.  Gregory Theisen gave new life to my songs.  I feel so honored and excited.  We are going today to look at the photos taken by Jeff Dunn.  He was here at our house last Monday and has his photos ready for us to choose.  We will be going back to Wild Sound Studio next Monday to help with the finishing part.  It is a fun time.  I am still perfecting the song descriptions.  I’m struggling with it because I wrote some of the songs years ago and I remember them well, but it’s hard to write a lot of interesting details about them.  It’s easier for the newer songs.  I loved working with Matthew and Gerard at the studio.  They are so gentle. Barbarba McAfee is so thoughtful to me. She has been a true friend.  I feel so glad that she is part of my CD. 

I loved this one of Mom and me. It shows how we spend much of our time. You can’t see my keyboard but it’s always there!
This keyboard is my voice. I use it with a few people but the best with my mom and Amy. It has freed my spirit to be able to express my thoughts.
This is the piano we have had in our living room since i was a baby. I love this photo because even though i can’t play the notes myself. I have drummed the keys all my life. Jeff felt like this photo was my hands drawing the music out of the keys. I like that image.
Mymom took this photo last summer. Jeff changed it to a different color. We love it. It might be on my CD cover because one of my songs is My Pony, My Beau. It is so relaxing for me to spend time with him. I miss the summer days.

CD Mixing Day

 February 10, 2010

I went to Wild Sound Studio on Monday with my Mom and Gregg to help with the mixing; I have never done anything like this before, so it was an interesting time.  I have learned so much about how to record songs.  I haven’t been able to stop thinking about it, because it has been a gift to me.  The people who have been involved in helping my music get recorded have been so kind and thoughtful and respectful.  Our photographer, Jeff Dunn, was such a gentleman and he is so eager to help us. I love his photographs of me.  Barbara McAfee helped me find my voice in my music by making sure I was heard throughout this process.

We all wore our Wild Sound Studio tshirts that day.
Gregg helped me walk around the studio. I get so sore from sitting in my wheelchair for a long time.
I listened carefully with Barbara and Matthew and decided what I liked best.

It has been so fun to imagine people hearing my music.  For those who have heard it so far it has been a wonderful experience.  I don’t know what will happen next, but I know that my CD will be ready very soon.  It has been a busy two weeks and I’m excited about sharing it with you.  My life will be changed because I am heard in a new way.

I was at the Art St. Croix meeting this morning.  I am on the advisory committee.  They are going to have my CD presented at the art gallery exhibit.  I think it will be done by then and it will be fun to share it with our community. 

Love, Karly

Barbara McAfee, Karen Bohnert and Me at our first meeting together

February 25, 2010

My Days of Waiting

I am excited this morning because I saw the cover of my CD yesterday. We worked on it with Barbara after the person who designed it sent us a copy.  I can see it now! It is so beautiful.  There are a lot of things to share so there is a lot of writing on it, but it is turning out great.  I am amazed that it is so close to being done.  They said when I give the final ok, it will take about 10 days for my CD to be ready.  It’s so beautiful!  I feel so fortunate that people who have helped me get my songs recorded are wonderful.  They are so eager to be part of this miracle with me.

 I have never thought that in this lifetime that I would be free. Free to express myself so others can hear me.  Free to be seen as someone who is intelligent.  Free to be seen as a valuable part of this world.  It has happened!  It has happened because many people have given me the chance to be heard.  I am so excited that Barbara McAfee is the woman who said yes to producing my CD.  She has honored me so much by her kindness and willing heart. I will be meeting with her, my Mom and Peter Mayer in a couple of weeks.  He is a musician who has recorded a lot of music and is interested in visiting with us about how he does it.  It’s an exciting and exhausting time for me.

 I heard from a mom who has a daughter with Rett syndrome. She works with Deepak Chopra.  They are interested in what I have to say.  She has some great ideas about writing.  I don’t’ know how it will happen yet, but I am learning more and we are asking lots of questions.  It is another way that I feel God has blessed me.  I don’t believe it myself yet, that I am helping others.  I am helping them see that all humans were created equal.  That we all have value, that we can be peaceful with each other, if we respect that we are all created by God.  I don’t have any more intelligence the next person.  I just have an open heart.  I can say that of all the girls with Rett Syndrome I know that we are gentle, peaceful, loving people.  Maybe that’s the best way.  I send you peace today.


My CD is Coming Alive!

November 17, 2009

 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 want to share what I think about my music.  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,



November 23, 2009

Music Frees Me

 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.


My Songs


10 Responses so far »

  1. 1

    Sandy said,

    its beautiful and great that I can now listen to it at anytime I want!

  2. 2

    Kelly said,

    The song is beautiful! Thank you for sharing it will all of us and again reminding us of how amazing our girls with Rett Syndrome are!
    Kelly, Brooklyn’s Mommy

  3. 3

    Bethany Crossley said,

    I am so excited that you now have a way to expand your listening audience!!! Your music is beautiful, and I am blessed by our friendship. I look forward to hearing your next composition!

  4. 4

    ruth richmond said,

    Hi Karly,

    I just heard your composition “For Strength.” I was wondering, when you envisioned that song in your mind, did you hear it as a piano piece or did you hear other instruments as well?

  5. 5

    Diane Lee said,


    Your music composition is beautiful! I am totally amazed by your talent and commitment to do the things that you enjoy, no matter how difficult it is for you. I am anxious to play your music for Mary Claire and her younger brother, Josh.

  6. 6

    Lisa Jenkins said,

    The process of composing music has always seemed like a sheer miracle to me. After reading your therapist’s description of how you do what you do, I’m just in awe. From working with Mary Claire, I have a small glimpse of the amount of time and effort that it takes. You have such determination, and your music is so alive and uplifting. Thanks for sharing.

  7. 7

    Sandy said,

    Just found the new song, Theme and Variation – How beautiful!!
    Thank you for sharing your music with all of us! It is so moving!
    Love Sandy

  8. 8

    Amelia said,

    I was referred to your blog by Sarah and Alex in Oxford. I’ve recently met them, but have worked with ladies with Retts before, and been mocked for believing they understood everything that was going on. I am now on a mission armed with your blog! I have given the link to others working with people with Retts in order to spread the word. It amazes me that even the professionals scoff at the idea that someone with Retts is communicating, and as I’ve read in your blog, rely on the body language cues which they themselves accept are often involuntary. It makes me so mad! I am a social worker and work alongside various other people and I shall be spreading the word. I can’t believe people are being ignored like this.

    Please keep writing. This website is amazing.


  9. 9

    Alexis Z said,

    WOW Karly! I have never heard such beautiful and deeply moving music! It took me to a place of worship deep inside my soul and I thank you so much for that=) You are a composer of heaven’s music.
    I am so overjoyed that you have this blog and are not afraid to tell your story to the whole world. I have always believed that people who have disorders such as Retts are not the incapable, drones that people think they are — I always felt in my heart that they were wonderful, beautiful people like anyone else that were just stuck inside an uncoorprative body. Reading your blog and hearing your music has proven this to me and given me hope that people around the world will now have their eyes opened to the unjust assumptions they place on people with Retts and other physical drawbacks. Your gentle and loving spirit has given me the courage to tell everyone I can about you and urge them to rethink their mindsets. I’m sixteen, and when I grow up I want to be a professor, but I’ve always wanted to make a huge part of my life fighting to change the way people look, think about, and treat the elderly and handicapped — you have given me my passion back and I can’t tell you how much that means to me.
    I will be praying that you get that documentry you talked about. I know that with faith — especially your faith — God will move mountains and astonish the world with the miracles He is doing and will continue to do through you.
    Blessing, peace, abundant joy, and love to you from a sister in Christ our risen and living Savior.

  10. 10

    Miett said,


    I have just recently been introduced to your amazing blog, via Greg Boyd’s podcast. (I am a podrishoner of WHC). I find myself being moved to tears as I read your blog entries, and am awestruck at your strength and spirit. I am looking forward to reading more, and am sharing your link on my Facebook for friends to read. What a powerful testimony your life is to the human spirit.

    Is your cd available for purchase? I would really like to listen to it!

    Blessings to you,


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