November 4, 2009 by Marj Hatzell
Here’s the thing about grief and pain. It eventually gets easier to live with but it never actually goes away. And then sometimes, when least expected, WHAM! It smacks a person upside the head and screams, “HERE I AM! THOUGHT I WAS GONE, DID YA? WRONG!”
I’ve been mulling this post over for several days in my head. I didn’t want to come across as whiney or cause anyone to pity me. I didn’t want to seem ungrateful or depressing. I’m not asking anyone to do anything, say anything or try to make me feel better. But it is what it is. And what it is IS this:
I am never going to get over the fact that Bugaboo ain’t like everyone else.
There. I said it. Feels good to have it out in the open. As talented as I am when it comes to pressing on in the face of adversity, it is wearing me down, making me tired, making me sad and basically making it very difficult to get out of bed in the morning. I was literally admonishing myself this morning. What’s your problem? I thought you were over this! C’mon! Move forward! Forget about the past! Can’t you just forget it?
But the thing is, I can’t just forget it. It will never go away.
Friday I went to Bug Boy’s school for their yearly Halloween Parade. It’s fun for the kids, they love dressing up and showing everyone their costumes. They have some very unique, homemade outfits. Bug Boy’s class, being the last class at the end of the hallway on the top floor, gets to lead the parade. They come out first. I ran down after helping the kids dress, grabbed my spot at the end of the parade route and waited, camera in hand. I was happily snapping pictures of the kids, smiling, calling out the names of our friends and neighbors. And somewhere towards the end, the first grader began to parade out.
The first grade. The kids that we have known since they were babies. Their mothers and I sat at the pool, park and playground, nursing our babes, chatting about how awesome it would be when they were all in first grade together. They would all be in soccer and music lessons and scouts. They’d be best friends one day, enemies the next and then make up and be even better friends. We couldn’t wait for that. The only problem is that Bugaboo was not with them.
He wasn’t at the parade.
It finally hit me, just then. All this time I had the attitude that, “Oh well! Bugaboo is taking a different path. No big deal.” Except it is a big deal, to me. My head suddenly started to spin, the crowd noise became drowned out by the roaring airplane engine noises in my ears. My mouth instantly became dry. My heart began to pound in my chest and my feet felt like lead blocks. I was having a panic attack.
Bugaboo doesn’t attend our local school. He isn’t in class with any of them. He isn’t taking the bus with his friends. He isn’t at the soccer field at an ungodly hour with them on Saturday mornings. And while I thought I was ok with it, the truth is?
I’m not ok with it. I’m not ok that he won’t ever live on his own or take care of himself. I’m not ok that he won’t get to make most of his decisions from now until adulthood. I’m not ok that he won’t be hanging out after school, jumping his bike over home-made ramps and knocking up for his buddies. I’m not ok that I have to keep locks and alarms on our doors, padlock our gates so he won’t escape and lock up anything he could possibly eat in the house, due to his little Pica problem (he was eating drop ceiling tiles in the basement last night). I’m not ok that I cannot sleep at night, either due to the fact that he’s constantly awake (even on sleep meds) or because I’m petrified he will sneak out and I won’t hear him. I’m not ok that I have to be hyper-vigilant and that I cannot keep him safe. I’m not ok that he won’t be like them, those supposedly-normal kids.
Now, I love my boy. I love him the way he is. I love him with every ounce of my being. I live and breathe for my family. I’d be lost without them. But the truth is, I didn’t sign up for this. I know I have to live with whatever I’m handed, but it’s a stupid cliche. The person who said that first did not have a disable child. I DON’T WANT TO LIVE WITH IT! I know I might sound like a spoiled brat, but there it is.
Ahhhhh…this blog thing is very cathartic. I feel better already. And the previous rant may or may not have had something to do with the fact that I’ve gotten 4 hours of sleep on average for the past two weeks.