A Place in This World

At four I sat on my Mom's lap everyday while she played piano for me.


I have been thinking a lot about my life and what I hope will happen in this world while I am still alive.  I haven’t had as many events and activities as I did last year because of my CD.  It was overwhelming sometimes to have that much attention, but I felt so happy to have a voice that others valued hearing.  Since the Fall I have not been as busy.  I love hearing from others and how they are affected by my songs.  This is the day that my music therapist is coming and I am working on a new song.  I feel very happy about that.  This new song has been waiting for a long time to get out of me.  I am calm today so I hope it will go faster than it does when I am hyper.

My keyboard is the best way I have to communicate. I hope someday it's easier for me.


My Mom and I have been reading a book together this morning.  It is called, Disability is Natural.  I like what she is saying because it has been true in my life.  She said that if our world revolves around therapies, and services for people with disabilities that we get stuck in our lives and don’t have many freedoms that an ordinary person would have.  I know that if anyone could see what really happens in some of the day programs in this country they would be very upset.  People are not given lives that matter when they are grouped together with few opportunities to have a normal life.  It’s ridiculous to think that going out in a bus with others twice a month if they are lucky to some store or park makes us part of our community.

For people like me, who cannot make our hands operate things, we are given even fewer opportunities.  I have an intelligent mind but the programs near us underestimate most adults with disabilities who have needs they can’t take care of themselves.  It’s not appreciated that a person can have an intelligent mind and limited physical skills.  We are grouped together with elderly adults who are mentally impaired and have Alzheimer’s.  We are given the same meaningless objects to fiddle with.  Since I am intelligent  we are  going to have to find a way without a day program, to have a life without isolation.  We are exploring everything we can but it’s hard to find people who are open to having someone who doesn’t sit quietly in book discussions.  My writing group ended because my teacher felt not enough people were coming.  I loved going there.  I loved feeling like I could share my thoughts and be heard.  I have a women’s study group that I have been going to but since I haven’t felt well for a while I have missed many days.  I decided to write about this because I know there are many young girls with Rett Syndrome.  I hope you believe they are intelligent.  I was so happy to hear of the comments last week on The View when Anna’s family shared that she is intelligent and understands.  That it’s just her body is not working right, because that is new.  When I was in school and especially when I was young, people assumed girls’ with Rett Syndrome were severely mentally impaired.  Little is offered to girls with that diagnosis.  It seems like that is changing and I am so happy about that because there are so many great things to do if we are seen as intelligent.  For those who have young girls with Rett Syndrome, I hope your schools are believing in her and when she graduates that her life doesn’t end and that she is allowed to show in every way that she is intelligent and capable of doing more than sitting in a room with others who are very impacted by their own disability.

My friend Elizabeth has Rett Syndrome and does not go to a day program either. She is very intelligent and communicates with a keyboard too.


My dreams for my life are to live with my family with the right kind of help so I am free to communicate, create art, write, have friends, have great things to look forward to, have people around me who believe in me and help me on the days when I can’t stand to be living in my body.

I have many hopes that one day there will be relief for the many girls and some boys who live with this rare disorder, but in the meantime, we need your kindness and we need your belief that we deserve more than just sitting and waiting in buildings until we die.  My Mom said, after we decided that I would not stay in the adult day program I was in after I graduated from High School, that it was like going to kindergarten and never being able to graduate for your whole life.  I would say, it’s like going to pre-school before you can crawl and talk and never be able to graduate.  It’s painful for those of us who are capable of more.

I have never been able to play music that sounded right to my ears, but I have songs in my heart waiting to come out. Leah has always played beautiful music.


Until there's relief for girl's with Rett Syndrome we will live in difficult bodies. My friend Ingrid Harding gave me this magnet for my van. It's from Girlpower2cure. There is hope for us.


I believe there are fewer people with low intelligence than many believe.  I think there are many people without the freedom to communicate because no one offered them the dedication it takes to make it possible to share who they are.  If it weren’t for my Mom, some of my teachers and caregivers, I would be just like them and I would hope to die very young.

I shared this because I hope this world continues to change for the better.  We are all better if everyone is valued.  I am sending my Rett friends a big hug today.

Love, Karly


6 Responses so far »

  1. 1

    Stefanie said,

    Hi Karly,

    I had to write to you today on your blog because I don’t think I could wait for a “snail mail” letter to arrive to you and tell you how wonderful it was for Manny and I to receive your letter. I have played your music for Anna and her big brother Gabriel and they both loved it. Anna smiled the entire time, and kept trying to touch the keyboard of the computer where the music was playing. We smiled and laughed and listened to the whole CD. Thank you so much Karly. I speak to you as a peer – I believe we are about the same age – and you are an inspiring woman with more courage than anyone I have ever met. I wrote a post about you, I hope you don’t mind. If you do, I can take it down.

    Good luck on your journey and keep writing. You give us a look into our daughters’ thoughts when they sometimes cannot.

    Lots of love,
    Stefanie (and the rest of the fam! Manny, Gabriel and Anna)

  2. 2

    spiritdances said,

    Hi Stefanie
    It’s so exciting for me to hear that you got my letter. I feel so excited for you and your family because you are living in a time where you have others to talk to.

    I know that the days are hard. Mine still are sometimes, but I understand why now. I am so honored that you all like my music. It has come through me, but I feel like it’s Gods’ gift to us. I have wonderful people who have helped me so much by having confidence in me and working hard to find a way. It has made all the difference. We read your blog and I’m excited that you are sharing it with others.

    Please tell Anna I am praying for her.
    Love, Karly

  3. 3

    Karly – Thank you so much for being an inspiration for us all. I read about you on Stephanie’s blog and I am just wowed by you. My daughter Juliana is four and has Rett Syndrome. We have ALWAYS know she is a bright girl. I can’t wait to go home and tell her about you! My family works hard to raise money for Girl Power 2 Cure because we truly believe a cure is near! Until then, we keep on going and keep proving to people how smart our girl is. Thanks again – keep up the great work! By the way – where can we buy a cd of your music?

    • 4

      spiritdances said,

      Hello Kristy
      I’m so glad you found my blog. It’s been so much fun to see who finds it and understands that their girls are intelligent. It’s so much fun for me to hear that parents believe in their daughters intellect. It was very hard when I heard people believing that I was lacking intellect. They would talk about it right in front of me, but it’s a different situation now for many young girls with Rett. It makes my heart happy to know that my story is helping others. I love to write. It takes a lot of effort somedays, but I feel like it’s my privelege to do it and help my Rett friends.

      Please tell Julianna: I am so glad that you have parents who believe in you. It will happen that you will find a way to communicate too. Until then, be strong because there are many of us who believe in your intellect and know you understand. Don’t give up hope.

      Love, Karly

      From Lois: Karly’s Mom
      Here’s the link to CD Baby where you can preview and purchase Karly’s CD.

      Blessings to your family.

  4. 5

    Tuška said,

    Hello Karly,
    I like your blog and your posts very much. I live in the Czech Republic and I really believe that not just girls with Rett syndrom but also other people (children) with “mental retardation” are intelligent.

    I have 5-year-old daughter, we don´t know still what´s wrong with her, we don´t know the reason of her problems, but they say she is severly mentally disabled. She may have Rett syndrom but the tests have been negative so we don ´t know yet.
    Anyway, it´s possible we will never learn what caused her problems, her epilepsy etc. …

    Karly, I´d like to ask you if you don´t mind – could I translate this post into Czech and put it on my blog about my daughter Nina? I feel this post very important a interesting to parents like me, but not evrybody in my country speaks English.
    I ´d be very pleased if you gave me permission to write your feelings on my blog in my language. Of course, I´d put in the link of your blog there.

    I´m sorry for my English, I hope you understand.

    Lots of love,
    Lucie (Tuška) and Nina

    • 6

      spiritdances said,

      Hello Lucie
      I am so honored that you are interested in my words and that they can help your family.

      I believe there are very few people who are really “profoundly mentally impaired”.It’s just that we have no way for communication so people watch our actions and our bodies and the things we do, and decide if we are intelligent. They are comparing us to someone who has no physical challenges.

      I do not have the normal Rett Syndrome mutation either but our geneticist says I definately have Rett Syndrome. I hope you give your daughter a hug from me. Tell her I know she is intelligent and that her body is her challenge, not her mind. Tell her not to give up hope. She is in my heart today. Please share my blog with anyone, and on your blog too. It is meant to help others. I have a lot of information on my blog about “How I Communicate” and “My Rett Body”, just look at the top of my page and you will see it too. I would love to have Nina get my music. If you look at the top of my page you will see where you can preview my songs and buy a CD.

      I send you love from Minnesota

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