Archive for July, 2008

I Have News

I want to let you know that I am so excited about something in my life.  I have been trying to find a way to share my music with more people. It seemed like the best idea would be to make a film. It is happening! The film crew was at our house today filming the introduction.  I am so happy! I have chosen the woman who is my voice in my film. I have written the draft of my script. The original piano music and the text are all from me. The filmaker is a wonderful, thoughtful man who is so kind to me. I will keep you on the inside track!


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After a Seizure

I’m here today recovering from a seizure from yesterday. I’m still weary. I wanted to share what it feels like to recover from a seizure. I can go for weeks without one, and then I have a few in a short time. It is so frustrating for me, because I want to have a lot of activity during the day. If I can’t get out of bed, I am really sad. I don’t like to live in bed! It’s not fun for me.

I know there are many who have more seizures than I do. It is so much better for me because I am not having them everyday. The thing I want to tell is seizures are not scary for me. I know they frighten others when they see them, but for me, I don’t remember. If I knew when I was going to seizure and I could communicate to someone, I would like that. I’m told that most of my seizures happen at night. It is not often that they come during the day.  I am excited that I feel better, but today I am struggling with apnea.

I am going to wrap this up, go out on the deck and hang with Beau. He is learning some new tricks. I will tell you about them soon. We have a new camera, so I will try to post some new photos soon.


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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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