Friday, December 19, 2008
Emerging from Haze
Sophie's class was in the annual Holiday concert again this year, and I set myself up, once again, for a ride home in tears.
As you might have noticed, I've felt a little more stressed than usual, these days, especially in regard to Sophie. Although this past week was actually a pretty decent one for Sophie, I've spent a lot of mornings in tears as she's seized her way through the first hour or so of waking. And I knew that her class had been "rehearsing" for their performance in the school recital. To be honest, I felt obligated to go, probably more so than I do with the boys. It's part of this very stubborn insistence that Sophie's life be as "normal" as possible. That she has a life, actually, apart from her disability.
The trouble with this insistence, though, is that it leaves out the fact that nothing is actually normal in her life. So, when I rushed into waking her up this morning, she actually had about forty-five minutes or so of those horrific seizures that I've told you about. The ones where her arms and legs fly out and about and she rolls onto her stomach and buries her face in the bed with such intensity that I have to protect myself from getting hit. When that was over she was very dopey but I almost forced her into the kitchen for breakfast (We have to go. You're in the SHOW!!) was the ridiculous refrain I uttered knowing that if I was in my right mind I'd just say To hell with it. We're staying home. But my chin was set with determination. Sophie's in the show. It's normal to be in a holiday show. We can't let them down.
We went to her school and I left her in the classroom and joined the several hundred other parents (NONE of whom I know) in the school auditorium. I've told you before that Sophie's school is very disadvantaged but that her particular special education class is fine. There's basically no booster club at this school and the program was translated into Spanish. I sat on a folding chair near the front and listened to the hordes of people babbling away in Spanish, crying babies and a guy behind me who spoke in a low, husky voice the entire time on his cell phone. In Spanish. I've got nothing against Spanish and would have been equally, if not more, annoyed had the language been English, but the combination of something unintelligible coming from behind, the crying toddlers, the people who just wouldn't sit down and the nervous anticipation I had for Sophie to come in nearly drove me nuts.
Sophie's class came in about an hour after the program began, and I was horrified to see that the two most disabled children (Sophie was one of them) were wheeled in in their handicapped chairs that had been turned into some kind of red car-like structure and they were literally deposited right up front. I could barely see Sophie over the top of the car and inwardly groaned when I did catch a glimpse of her. It wasn't the jaunty Santa hat with the dangly sequinned earrnings hanging from it. It was her head, hanging, her eyes half-closed, her whole body language one of what appeared to be utter fatigue and misery.
I couldn't stand up in the middle of my row, but I wanted to. I wanted to run up the aisle, away from the enquiring eyes, grab her chair and just run. Run out into the dirty, run-down parking lot and drive away in my yuppie Mazda.
Some of you might wonder: where's the magic? Where's the warm, fuzzy inclusion feeling? The beauty of the disabled standing alongside the abled? Although it might be a reflection of my general grouchiness, I HATED that Sophie was so different today. I allowed it all to get the better of me. I stayed until the end and weakly congratulated the class. Sophie was still slumped over, drooling, half asleep. The other kids in her class were happy because they had done well.
I fled in my Mazda, letting myself cry because I felt like shit. I was heading north, back to my house, and the mountains that surround Los Angeles, the ones that you don't see much of during the year, were all of a sudden there, crystal clear and snow-topped ahead of me. On winter days like these, the sky is incredibly blue and the mountains appear almost ridiculous, like a backdrop that has been dragged in for a show.
Sophie had been dragged in for the show. I wished today that I could have accepted this morning for what it was. Not a good morning to go to the show. I might not have hoped that things would be normal, because they're just not. I wouldn't have set myself up for such disappointment. I'm irritated that I do that over and over again. It's the flip side of hope. Crazy hope.
The day went on. I made my way, eventually, to the boys' Christmas concert. Oliver wore a green elf hat and stuck out in the crowd. The songs were sweet and when it was over, we got in the car and headed home.
I thought a lot about acceptance today and decided that I have to revisit it. When Sophie came home, she looked relieved. Or at least I hope she did.
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I made similar mistake this week by taking Emmett to Violet's holiday performance at the preschool. My instincts told me that we were having a bad day and not to take him, but I didn't listen. He absolutely ruined it - not just for me, but for everyone.ReplyDelete
Crazy hope. I really like that expression. I think sometimes we're just so desperate for "normal" that we ignore reality. The heart needs a break from all of the breaking, if that makes sense.
Oh, the fun of crazy hope. I'm so very sorry you had such a difficult day.ReplyDelete
The different paths of motherhood (my youngest has PKU), not something they prepare you for in Lamaze class or Baby 101.
P.S. I LOVE sensational - it's going to be the new Fabulous! A lady ahead of her time.
Crazy hope is what keeps us humans going, I guess.ReplyDelete
But it when it all falls apart (at least for me), I lose the hope part and just go crazy.
You are holding up that mountain sometimes, Elizabeth.
I'm hoping it gets lighter.
Keep those carols coming.
Peace and Joy to all of you.
i sensed something was sad yesterday. i wish i had known so i could have given you a bigger hug. you are an amazing mom, and i am inspired by you.ReplyDelete
This post stunned me . I have spent some time reading through this morning, awake to go on a run and stalling. I read your published articles in the side bar and now some old archived posts.ReplyDelete
I am honoured.
I am captivated and gifted by your writing, your experiences, your soul, and your way of letting us see some of it in authentic beauty.
For some strange reason the power went out this morning while i was linking to you, but I stuck it out, then had to reload stuff as an anti-virus thing needed updating etc.
I took it as a sign that things of value need the extra work or idea that something is going on here worthwhile.
I will return to read more, and wish you luck with your book and can't wait to read it.