Real Friends

I was in a bad place when I wasn’t able to communicate. Now that I have my voice I am able to share who I am. I have choices in life. I want to share my thoughts with others. I have found that I am not shy. I want to give hope to others who have no vision for their lives.

I am aware of so many people, who through no choice of their own, are left to the systems that give us services. I know they are not living a full life. It would not be the choice of any person who is free to choose their own life.

When I am able to comminicate, my wishes and dreams are taken into consideration and I can determine what I want to do with my days.

If you are reading this you may be surprised what someone like me who is non-verbal, not able to walk and is visually challenged would want for their life. Many people think that those of us who don’t speak are not thinking or feeling or aware. When I am able to share my thoughts many people wonder if they are actually mine.

Thanks for checking out my blog. I am honored that you are interested in what I have to say.

Come back soon!



4 Responses so far »

  1. 1

    Sandy said,

    I cannot imagine having someone else decide everything for me. Having the ability to think, decide and verbalize those thoughts and decisions are incredible gifts most of us take for granted. Thank you for giving me food for thought about my own life.
    Hugs to you and Beau!

  2. 2

    Brian said,

    Karly: Your blog is AWESOME! I especially like to picture of you and Beau. The Cub Scouts you talked to a few weeks ago are still talking about your visit. I hope it is O.K. for me to share your blog with them. I look forward to checking back with you soon.

    Your Friend,


  3. 3

    Marc Chevalier said,

    Hi Karly,

    I just discovered your blog, thanks to a link left on one of the facebook group associated with Rett Syndrome. My knowledge on this syndrome is pretty new since I was not even aware of this syndrome a year ago, but since then I try to better understand the pathology. And having the opinion of one person who is affected by this pathology is very helpful, not only to understand the scientific part of it, but also to understand the feelings associated with it.

    I read almost all the posts, and I could really feel the frustration that those who cannot speak can feel. I would not say that I am amazed by your thoughts since I do not want to dissociate your way to express yourself from other people. Because you are not different. The pathology do not make you different from other people in the way to think. And other people should be aware of that, that you can not be considered as not normal. Reading at your posts, I could imagine that an introverted person could have written the same way. Do not be offended, my point here is to underline that people really have to understand that even if you are penalized by having the Rett syndrom, that does not make you different from others. And here I can say that I am amazed because then you have the great power to say what other affected by RS cannot express.

    I just wanted also just to talk a bit about the problem of friendship that seems recurrent in your posts. I can really understand that it is more difficult for you than for any people around you. But, if you look also around you, you will find that it is the problem of everybody: today, everybody experience difficulties to find real friends and even if they seem to have many, loneliness is felt by a lot of people. Believe me, sometimes having few friends but friends who care, and your family around is just enough. It is less painful than to have friends who do not really care. You seem to have a lot of love around you, sometimes it is just enough. I can understand that it is easier to share some feelings with friends rather than family, but I bet that belonging like that, you will find some good friends who will want also to share with you their thoughts about life.

    Continue writting, you have a power that is rare enough to make you feel special. Do not let people associate that to “not normal”.


    (I hope everything was understandable in the post, since my English may not be perfect)

  4. 4

    Alex Adams said,

    I am visiting.
    It has been the same for me – to be thought dumb. Lots of ghastly children jump to the belief I’m dim. I see it. It vexes me. They gawp at me. It riles me. To be a joke. Each time I go out it happens. It’s the demise of my fun in going out. Visiting your blog, I say hi, we have similar experience of bad time. I’m pleased to know of your existence. I salute you. Dumb, I’m lonely. Making contact is nice.

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