This is a rant-Sorry, sometimes you just have to speak your mind...
I understand that there are sicker children out there in this world, and while I know some people think it's comforting to say "it could always be worse!" or tell me that it won't change Charlie from who he is, and that I shouldn't love him any less, It totally isn't comforting. It makes me want to scream actually.....
Really people?? Do you think that I really love my son less?? I know it could be worse, but it isn't. Yes we were lucky, and while you don't see the difference between my son and yours doesn't mean there isn't. You don't have to get up 5 times during the night, EVERY NIGHT because your son is screaming like someone is murdering him. You don't have to read EVERY SINGLE INGREDIENT on a label in fear that your son might get something that causes him to go crazy, and if he does get said ingredient your up until god knows when trying to keep your son from busting up his head because he is slamming it so hard into the walls and floor and laughing. Your not trying to keep him from biting himself, or pulling out his hair. You don't have to listen to the non-stop screaming. And when he does finally fall asleep, you can't sleep in fear that he has given him self a concussion, so your up every 30 minutes checking to make sure he is still breathing. Nor do you have to worry about him being so constipated that sometime you have to help him go, or worry about him having such bad diarrhea that it just constantly leaks out of his poor little bum and causes major sores. You don't have to stick to a strict schedule in fear that if your even 15 minutes off the next 2 days are going to be hell. You don't have to plead with your child to talk to you, to tell you what they want.
You don't go through my personal struggles as a parent watching their child go from a little boy to an animal in less then 2 seconds because there is some noise, or fabric that he is having problems with. Or if he is in pain, and you can't figure out where or why. You don't have to deal with strangers looking at you and commenting on your child and saying things like "Could he scream any louder?" Or mocking him at the check out stand because he is screaming "WE WE WE " because of the beeping noise.
As a person I have given parents those looks of "Can't you control your child?" I now regret every single comment or look I have ever made. I understand now what it's like to be on the receiving end of those hurtful looks and comments.
I tell people Charlie's story not for sympathy or empathy. But for others to understand, be educated and support us. I don't want a "I'm sorry" or the infamous "It could be worse". I want people to ask about him, to really ask. Not just the "hows charlie" because you feel like you have to, but because you really care. If you don't care, then don't ask. simple.
And in case your wondering, Charlie is *the* most brilliant little boy I have ever met. And anyone who meets him, says the same.