Our mams and dads are friends too. They talk to each other a lot and come to visit us at home and sometimes we go to their house.
They have a big garden with swings and a trampoline and a big dog called Buster. In the summer we sometimes lay on the trampoline for a little time. I hate all the cream they put on our faces. Mam said it was to keep us from burning. It was fun to look up at the sky and see the fluffy clouds moving.
I have three older sisters who are not like me. They can walk and talk and go to a school just up the road.
I was born with some problems. I still go for tests to Temple Street and Crumlin. I get seizures and sometimes I have to get emergency medicine. I also have a problem with my heart which will be fixed when I get older and stronger.
Like Tom, I have all my food through my Mickey Button. I vomit a lot and the doctors are trying to fix the problem. Some days I am really tired and need to sleep. I need oxygen every day to help me feel better.
I want to tell my parents how much I love them but I can’t talk.
It is very hard for my family and they need help. Nurses come and mind me two nights a week to let my mam and dad sleep. Sometimes I hear my mam and dad talk. They worry that I am sick so much. I want to tell them how much I love them but I can’t talk. I am learning to recognise pictures in the Centre and someday I will be able to tell them.
My sisters are very good to me and wheel me around the house but sometimes they complain that they can’t do things because of me and all my appointments.