I really don't mind talking about Ben and his CP. Most of the time, I actually enjoy it. I like it that people are interested. I enjoy educating them. Mostly, I think I just like to talk about how amazing my Ben is.
But there is one comment that alot of people make that I absolutely hate. It doesn't always sound exactly the same but the meaning is the same. Basically the person thinks that I should be grateful that Ben isn't worse off. Basically,
IT COULD BE WORSE.
I get what they are saying. I really do. I AM GRATEFUL. I am filled with gratitude each and every single day. I read ALOT of blogs. Most of these blogs are written by moms with a special needs child (or children). And there are kids out there that are a lot worse off than Ben.
There are kids on feeding tubes and oxygen. There are kids who are blind or deaf or both. There are kids who don't have speech. There are kids with cancer and brain tumours. And there are kids that don't make it.
I GET IT. It really could be worse.
But don't they get it? Don't they understand that it SHOULD be so much better. Don't they see that Ben should be able to walk and run and jump? Don't they understand that Ben shouldn't have to spend hours each week in therapy? Don't they get it that Ben should be able to play tag and hide-n-go-seek and kick-the-can? Don't they know that Ben should be able to dance at his wedding?
I know that they are just trying to make me feel better. But for some reason, it doesn't. For some reason, it makes me feel that they really aren't trying to understand our situation at all. For some reason, it feels more like they are just trying to make themselves feel better. They want to think that we have it good. That things aren't really so bad for us.
When the reality of the situation is...IT SUCKS. But of course...it could suck even worse.