While I would never characterize my life as simple or easy (HAAAAAA!), I have been incredibly lucky in one very specific way: I have not yet, as an adult, experienced the loss of someone to whom I was very close. So in some ways, I feel I’m something of a stranger to grief.
The closest I’d come until fairly recently was the grief of losing my first marriage, and my hopes/dreams/plans associated therein. It’s not the same, of course, but it followed a similar trajectory and kind of came out of nowhere to bite me on multiple occasions when I “should’ve” been well past mourning. The up side, there, is that time, therapy, and then a much healthier marriage have largely resolved my associated issues and pain. (Remind me to bake Otto some cookies. He is awfully swell.)
And now I’m struggling and grieving and I feel like I just don’t know how to do it, how to get through it, how not to throw down the rest of my life and stomp and cry “It’s not fair!” But nobody died, which means I have no “excuse” to use, so I keep living and writing and shopping for groceries and paying the bills and trying to pretend I am not grieving every day, every hour.
Yesterday I wrote a post for Work It, Mom! that generated a lot of discussion, and a fair number of people saying, “No, I don’t agree with you,” and I was back there in comments, reading, listening, responding, and feeling sort of like, “YES, this is a conversation worth having.” My head was COMPLETELY in my work and it felt great.
And then the phone rang, and it was the school. It was Monkey’s parapro. “Mir, don’t panic,” she started out. “But we can’t find Monkey. He got really angry with me and ran off.”
I couldn’t even process what she was telling me, exactly. How do you lose a 5th grader in a school that isn’t even all that big? The follow-on made it a bit clearer: There had been An Incident in class, he’d melted down, he ran to the guidance counselor’s office (his “safe haven” in times of stress), she wasn’t there, he took off around the corner… and by the time the parapro caught up, he was gone. Just gone.
She called because they thought he might have left the school and headed home. They had mobilized in the building, of course, and were searching there. As she filled me in and I pulled on my shoes and prepared to rush out, all I could think was that if he was angry and impulsive enough to run out of the school, there was no way he was going to stop and look both ways anywhere he had to cross the street. Which meant I might well be running out to scrape him off the pavement.
I was about to hang up and go when I heard shouting on the other end of the line. And then I heard a giant EXHALE from the parapro. “We have him,” she said. “He’s okay. It’s okay. Let me call you back in a few minutes.” I agreed. I put the phone back on its base and sat down at my desk.
I couldn’t stop shaking.
Later I got the rest of the story. He hadn’t bolted, not really—he went where he was supposed to be, next, but the parapro had forgotten he had a special activity, and then the teachers who were supposed to be there were a little late. No biggie, not really. Monkey was surprised by all the fuss. He was very apologetic.
When he got home yesterday afternoon and I tried to talk to him about it, he started screaming at me and crying that no one understands him. I bit back an, “Oh, honey, that’s not true!” Because it sort of is true. I opted to pull him onto my lap and give him a giant hug and tell him we could talk about it more later, but that right now he just needed to know that I love him so much.
Last year, when he was finally diagnosed, we were in a dark time, here. Monkey was in The Pit. (You know The Pit. It’s not that you can’t see the light waaaaay up above you, it’s just that you have no possible way to reach it, so why even think about it?) The diagnosis helped. The IEP helped. But 4th grade was—by and large—an incredibly rotten year for him.
Summer was better. He grew a ton. He was happy most of the time. And then school started again, but this time he has a parapro (finally) and more support in the classroom.
This year has been magnificent. Amazing. He’s a different kid. He loves school again. He has friends and he goes whole weeks without having Incidents. His teacher is a seasoned veteran and his parapo—God bless this incredible woman, seriously—is someone with years of experience working with kids with varying levels of autism. She gets him. She pushes him, in the best possible ways. And she loves him to pieces, and he loves her right back.
And I am mired in grief.
I am (still? again? both?) grieving normal. I am grieving the life I want for this child I love so much. The life he probably won’t have. He may have a wonderful life, yet—I’m not saying he won’t—and I even believe that someday, as an adult, he’ll mention to someone that he has Asperger’s and they will respond, “Really? I had no idea.” But he is not quite 11, and experience and research and “expert opinions” suggest that it’s going to be a very, very long road to 18. Or 20. Or 22.
He is brilliant and beautiful and funny and loving and thanks to wonderful support at school this year, he’s having the kind of year I didn’t even dare to hope for, last year, back when every day felt like a juggling act to keep him from shattering.
But the truth is that when every day was hard, it didn’t hurt this much.
The truth is that when a simple misunderstanding causes everyone (including me) to assume that he may have run off with no thought for rules or his safety, and that when that happens in the midst of what we foolishly believe is “overall progress,” it cuts even deeper. Hope is dangerous. It takes me up to where I fall further, every time something goes wrong.
We’re not even halfway through the year, and I’m grieving middle school for him. I’m paralyzed with fear over what happens if we send him to Chickadee’s school next year, and equally paralyzed over what it means if we decide we can’t. I know that when the time comes we’ll make the best decision we can and then we will fight like hell to make sure he’s okay. But the grief is still there.
It’s hard to celebrate the little victories when there are so many losses, bit by bit, the daily ones as well as the larger ones looming on the horizon.
Last week he had a meltdown during a test. A screaming, sobbing, curled-up-in-a-little-ball meltdown while his classmates, startled, stopped testing, themselves, to watch him be extracted from the room by the parapro. I think we’d gone a full month, before that, without An Incident. It was handled—beautifully, by the sound of it—and he was okay by the time he got home.
I do the things I need to do. I keep the grief at bay, most of the time. And then there are some days when I’m forced to imagine my kid hit by a car while in a blind rage and then things like the “you are totally wrong!” comments on something I’ve written seem a whole lot less important.
Some days, getting out of bed, packing lunches, doing all of the things I need to do in a day for my family and my clients… doing all of that while swathed in layer upon layer of mourning for what isn’t, maybe what never was, what I’ve already been over time and time again… some days that’s all I can do.
Some days I think, “I can’t bear it. I can’t keep pretending I can handle this.” But there’s work to be done and chores to take care of and people I love. And most especially, there is that little face that searches mine for clues about whether or not it’s all going to be okay.
So I kiss his nose and smooth his hair and smile at my favorite pair of gorgeous green eyes and tell him, again, always, how much I love him.
And in my head, I tell the grief to kindly go fuck itself already.