Hi my name is Esme. I have a brother Louie who is seven and a sister Orla who is two. There are a lot of things that make me, me. First I will tell you about me, then about my family.
One day I went on a bike ride with my dad and he was far ahead of me. I tried to keep up with him and then I was closer so I went faster but then everything went black. I woke up in the car and we were going to the hospital. My mom told me I broke my tooth and that she was pretty sure my foot was sprained and my nail got ripped off too. When we got to the hospital I saw the doctor he said I almost got something called a concussion. The next day I went to the dentist. I couldn’t eat whatever I wanted and needed to only eat on the side of my mouth. I am better now and back on my bike.
There is much more that makes me, me I want to share with you. My brother Louie is special to me because he has a rare genetic disease called trichothiodystrophy. Because of that disease Louie was in the hospital for seven months. In that time he had surgery and got a trach because his lungs don’t work as well as our lungs. He got weak because he was sick and lying in bed. Some days Louie has to get a blood transfusion. Most of them are for the entire day. It makes me sad when he is in the hospital. I really wish he didn’t have to be there. When I am sad, scared and angry I like to share my emotions. I feel this way because I don’t want Louie to be in the hospital. I love when he is at home.
Louie is hard to take care of and we can’t go many places with him. Louie can’t walk and he has a power chair because he can’t walk. I wish people knew that you can’t just see my brother Louie as a special needs person. Louie is on a baseball team in the Miracle League. His jersey color is orange. I wish Louie could walk. I also think he will be good at talking when he is able to.