I’m Ready for Life to Begin

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. It has amazed me how many people have responded to my blog. It isn’t a fancy one, not great to look at, it doesn’t even have my music on it yet. But 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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4 Responses so far »

  1. 1

    Bethany Crossley said,

    Karly,
    Again I thank you for sharing your perspective about life and the challenges facing you into words that motivate others to think more kindly about other people and what it would be like to walk a mile in their shoes. I am so glad that you were able to go on the paddleboat ride! The St. Croix river is so beautiful too! I hope you were able to enjoy your 23rd birthday. You have accomplished a lot in just 23 years! You continue to inspire me. I am so blessed by your friendship!

  2. 2

    Sandy said,

    Happy Birthday Girl!!
    I hope you enjoy your paddleboat ride – You are right, the St. Croix is beautiful and the paddleboats are fun!! I am so glad to hear that you are enjoying life!!! Everyday is truly a gift for all of us that most of us take for granted, thank you for reminding me to be grateful for each day no matter what it brings!

    Love Sandy

  3. 3

    tiziana said,

    ciao sono italiana e per comprendere ciò che scrivi uso il traduttore sono la mamma di denise una bambina rett di 5 anni non sai che felicità mi da le tue lettere,avevo la certezza che mia figlia capisse ma ora ne ho di più
    grazie tesoro per quello che ci dai anche la mia bambina ha problemi di respirazioni ogni 2 minuti va in ipoapnea
    grazie di esistere
    continua a scrivere baci
    This response is from a Mom who lives in Italy with her 5 year old daughter, Denise, who also has Rett Syndrome and struggles with apnea. We got to see my blog page in Italian by using an online translator.

  4. 4

    Suzie said,

    Happy Birthday! Hope you had a great day! Those of us who take breathing for granted do become alarmed when we see someone struggling to breath. I think it is because of the fear of death. Not breathing for long enough is fatal, of course, so the natural reaction to another not breathing is to try to help, which in your case may not be possible. Thanks for reminding me to value this great gift of life and breath that I take for granted. I’m sure you put much more value on every day than I do. Wishing you all the best in the year ahead!


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