Tuesday, March 30, 2010

Is He Hooked to any Machines?

I know this is mean sort of, but when Taylor was much younger, even back then we had a hard time finding baby sitters. Sometimes we would go over to the dorms and just put up sign asking for sitters. We never told them in advance that Taylor had Down Syndrome, because the minute we did, we detected panic and that "deer in the headlights" timbre in their voices. So, we'd wait until we picked them up and while driving them to our house, we'd say, "And oh, yeah, our youngest son has Down Syndrome." Silence. Un-ease. That proverbial pregnant pause--space in the air.
And then it would be, "Oh, uh, well, is he hooked up to any machines or anything?" I guess they thought they were going to have to deal with a ventilator or something. And this is where we'd do the hail Mary pass of an answer, "Yes, actually to several machines. After you put him to bed, you must keep the vacuum cleaner going at all times. And the washing machine. He loves both of those sounds. The sound of the dryer running (and of your folding clothes) will keep him from seizure-ing." We'd come home to a very clean house--vacuumed with clothes washed and dried--no seizures thank goodness. It's amazing what the whir of some machines can do--must be the white noise.
Our marriage did not make it. There are all sorts of statistics describing the high divorce rate among parents of special needs children. Being a parent to a typical child on a good day can be stressful. But to new, young, fearful parents, raising a disabled child can uncover other cracks that were probably there in the marriage to begin with. I don't know if it's human nature or not, but there was something in me that just needed to know WHY I had a son who would need so much help all the way through life. I vacillated between screaming at God, hating God, needing God and retreating from God. I did the same thing with Taylor's father. Although I knew intellectually that it was nobody's fault, I secretly was ready to blame those closest to me on the path.
Giving birth to a brand new baby with special needs is a loss of sorts. It's the loss of the child I had in mind---had dreamed of--had planned for--had visualized making my life complete. Loss is loss. Each one of you reading this has experienced loss. You might be saying to yourself right now, "Yes, but it wasn't like yours." Let me repeat: Loss is loss.
And we need to grieve our losses. If we don't, we'll wear them or eat them, or drink them or isolate ourselves into our own form of despair. So, yeah, I did the five stages of grieving (Denial, Anger, Bargaining, Depression, Acceptance) about 45 loops each---sometimes all in the same day---for sure all in the same year. I'm still doing some of the stages in spurts and starts. I got stuck in some of the stages for longer periods than others. I am a huge bargainer with God. You can't even believe it. I should be locked up for the inside deals I have tried to make with him. Some of them make me laugh. Thank goodness he saw right through me and totally ignored all the convents I promised to live in or all of the chocolate I swore I'd give up. (I am still convent-free and chocolate IV'd---so no deals ever went down.) But, let me make it eminently clear: I am still totally willing to bargain---and I'm not against bribery either. Sad but true.
I am not sure at what point I came to acceptance. Actually, I am not all the way sold on acceptance. It's still a process for me. Because every time a milestone should be taking place in Taylor's life, I have to regroup, sit still, cry for a while and then come to terms with what is. What is--- is this precious life---not the life I dreamed of or wrote about in my 9th grade diary. But a different life with different textures and short buses and more wheelchair friends and bowling alley lanes with bumpers lining the gutters. It's different. It's nobody's fault. And, I don't blame anybody anymore.
But....about my fat legs. I totally blame my mother.
It is probably not her fault, but I still blame her.
Unless God gave me these chunky legs.
So, there's another blame option.
Oh, heck, what if I just took responsibility for my life?
Now, there's a thought.