looking back.....Saturday, August 28, 2004

Saturday, August 28, 2004

Love me, Accept me, I am Yours
The day I was born my 8 year old big sister, Emily, was getting tested at a big hospital. She was taking medicine for a disease she has had since she was born called Juvenile Rheumatoid Arthritis. She has it in her legs and her eyes. Her medicine that helped her walk and see was making her liver sick. Grandma was so happy to tell mommy that Emily was ok and that her liver was better. But my mommy was sad and told them that I had a problem. My name is Elise and I have Down syndrome. After I went home, my mommy cried all the time. Sometimes she did not even want to hold me. One day my big sister, Emily yelled at my mommy. Emily said that it did not matter if I had Down syndrome and that my body was not perfect. She reminded mommy that she has JRA and that mommy still loves her. “Down syndrome…so what”, she said…”everyone has their own problems to deal with…I have arthritis and well…mom you know YOU could stand to lose some weight!” Now, my mommy holds me all the time. She still cries once in a while but I know that she loves me very much. I heard her tell my Daddy that she would do anything for me. If there is something that she thinks that I need, she will spend hours on the phone talking to people about how to get it for me. Daddy smiles at mommy and says, “you’re doing good honey”. My big sister is my friend. She was there with me on Christmas Eve when I was in the hospital. She slept in my room on the couch in her sleeping bag and made decorations for my room. She held my little hand when I had to have a needle stick. Emily knows…she goes to the doctors all the time and she has gotten many blood tests. Our family spends a lot of time driving to doctor appointments and a lot of time waiting in doctor waiting rooms. Emily likes to stay cheerful and she makes our mommy laugh. They have a joke about what a “doctor minute” is. When the nurse tells you that the doctor will be in to see you in just a moment, that really means in about 20 minutes and if they say the doctor will be in a minute, it means in about 30 minutes! Someday I will be old enough to tell that joke too and to laugh with them about it. Until then, I am just happy to be loved, held and taken care of by a family who is not perfect. But then again, who is? …Even our doctors can’t tell time!