I want to thank everyone who has left me a message lately. I feel so much encouragement from all of you.
I don’t want to have my life seem to be easy compared to other Rett girls, because we work so hard to just keep me well lately. It has been so good to feel great. It doesn’t happen often. I want to say that it is often very hard to just live another day. But in spite of all the challenges, I find that my life is helping others. Giving people insights into what it is like to live with Rett.
I don’t want the others females who live with Rett to get discouraged, because I know that one day there will be solutions that we don’t have right now. I want to breathe normally. I don’t want to hold my breath and hyperventilate all day long. It’s so exhausting and frustrating and even embarrassing sometimes. If I could take that away, it would change many things about my days.
I have many great things that are happening in my life. My CD is going to be played for a large event next Monday, during the lunch. It’s for the ADA celebration held in Minneapolis. It’s going to have many people there. My sister Leah is coming home next weekend from Ohio. We are creating floats and interesting things for a parade we are going to be in next weekend. Many great people have come together to help make this happen. Our group is called Artworks!. It will be great to have more people who are interested in the arts join us. I have many interesting things in my life, like speaking at camp next month that is so amazing for someone like me! But I have much that I want to change in my life. I am sure there are others who feel that way too. I love my family and I love my good times. In the quiet of my heart I am slow. I need to remember that today.