Amelia’s Story


My Brother James (by Amelia, age 12)

Most people when they find out that my brother has a disability tell me how sorry they are, and how sad that is for our family. I always feel very strange when they say these things, because I never really think about it that way. For my family, James’ KCNQ2 has become a part of our everyday life. People think it would be so strange for me to live with him, but I have lived with him my whole life, so James knocking things over in my room and playing in my sink is just normal. When he knocks things over, I pick them up. When he plays in the sink, I turn off the water and wipe it up with a towel. I don’t ever think much of it because this is just a part of my life.

Living with James can be nice sometimes. It really puts everything into perspective. Sometimes our WiFi isn’t working very well and I get frustrated. I am angry that I’m trying to communicate with somebody through text or Instagram and it won’t go through. But then I’ll realize that this is what it’s like for James every day, and it’s not a crisis that I can’t send my friend another picture of my cat. I realize that I am lucky I am able to communicate at all.

James makes me an overall happier person. I think that this is because he is a happy person. He’s almost never sad. I think the reason James is so happy is because he knows how to appreciate the little things in life. Most people who are handed a cookie would be happy (I mean, I would hope so). Most people would agree that they like cookies, but they wouldn’t jump for joy when they see one. James would. If James is handed a cookie, you can tell he’s excited. He waves his arms and he has the biggest smile on his face. Really, you’d think he’d won the lottery. But this is just his reaction to a chocolate chip cookie. I think everyone would be happier if they acted more like my brother James. He appreciates everything and he always finds something to be happy about. Even on long car rides when everyone else is longing for it to be over, James is looking out the window and smiling his great big smile.

So I don’t think of James’ disabilities as some terrible thing and that I need everyone to tell me how sorry they are. I think that James teaches the people in his life how to be happy, and there is a lot that we can all learn from him.