My name is Sara Peters and I would like to talk to you from my heart about my brother, Kyle. My brother, Kyle, had Dermatomyositis. Now he has M.E. and that stands for Myalgic Encephalomyelitis. He has been sick since I was four years old and he was six years old.
Kyle had to take a medication that made him get chubby and kids at school called him names because he looked different. That made me feel sad and frustrated. Sad because Kyle's feelings were hurt. Frustrated because I couldn't help him.
Lots of times Kyle had to stay at the hospital and I couldn't see him or my Mom. That made me very sad. I would look at a picture to remember Kyle and it made me cry. I never knew when he would get better and come home again.
When Kyle is sick and he needs help, then he gets more attention from our parents. Sometimes that makes me feel angry and frustrated. Angry because I want some attention too. Frustrated because I can't change the situation.
When Kyle has a relapse, he gets very weak, especially his leg muscles. He also feels pain in his legs and feet. He doesn't have a good appetite when he is sick and he has nightmares and he needs to sleep extra.
Our family has to change plans because of Kyle's sickness so that we can go places with his wheelchair. Sometimes I get angry and upset and I punch my pillow because we can't go where I want to go.
When Kyle needs extra sleep, we have to keep quiet in the house and sometimes I just want to play the piano, but I can't.
When Kyle doesn't eat properly, Mom makes him a special milkshake to give him calories and vitamins. To make it fair, Mom makes me and my other brother our own milkshakes. That way, everyone gets a treat.
There are good things about being Kyle's sister too. I can help him out when he is weak. He has patience to teach me games like Chinese Checkers. A really good thing that came from Kyle being sick is that our family found out about AbleLink. AbleLink (a.k.a. Ability OnLine) is a computer mail system. We send messages to people from our computer at home using the telephone line. I send messages to Dr. Froggie who is at Sick Kids Hospital and I have made friends with some other kids too.
There are good things and bad things about being the sibling of a sick kid. Sometimes I would like to have a different brother who is not sick.But I don't want to send Kyle away. I love him with all my heart.
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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Fairfield University
Fairfield, Connecticut 06430
Last updated: September 30, 2000