Bryon says that this is a very serious sounding post...sorry. It made me cry when I read it, and when I wrote it; but it's about my life. He prefers when I'm funny. We can't be funny all the time!
When I was still working, one of my students asked me, right before my first surgery, if I’d written a goodbye letter, “just in case,” for Collin. This woman was a lovely student, except for the fact that she’d just made me cry in front of my class.
I can’t say that I hadn’t thought about it. In fact, I’d thought about it every day since my surgery had been scheduled. I’d sat down and started draft after draft. But, I didn’t end up writing a letter then, and I didn’t write a letter this time. I suppose it’s possible to see this as selfish. What if I’d died? My son wouldn’t have had a tangible goodbye to hold on to. He’d have had no final words, at least not on paper. He’d have had nothing, no physical “thing” to put in his hand.
But, the thing is, he’s nine, and he’s autistic. He collects random objects, and calls them treasures. I don’t get control over what he treasures though. He’s lost, or eschewed countless things that I thought qualified as mementos, and saved trash. He’s cultivated collections of string, bits of gravel, lint, dead bugs, and glitter.
It’s possible that I’m underestimating him on this subject, of course. The only real treasure that he’s kept, in his entire life, has been his monkey. We made Monkey together, when he was about a year old, and like most children, he chose a stuffed animal, at random, to latch onto. So, he does have some sense of sentimentality. But, other than that, like most (autistic) children, his idea of what's treasure, and of what is important, is fleeting, but fierce.
For example, yesterday, he insisted that we bury a dead butterfly that we found on a walk. He was so devastated when we found its ragged body that he cried the whole way home, cradling it gently in his hand. It was quite ridiculous, frankly. How do you comfort a child about a dead bug that he found in the street? It’s not like he found a dead hobo.
I wanted to be comforting, but also not to encourage these kinds of dramatic interludes. He was predictably Collin though; he got distracted by a box fort in the garage, when he went to find the hand trowel. Like I said, his idea of what’s important is fleeting.
He’s no different than any other child in this way; when he sees something exciting, he’s drawn to it. The only difference is his level of of fixation. And sometimes, his fixations come at the cost of what others might deem, actually important. He might talk only about one subject for weeks on end, for example. And I do mean, only about that subject.
But, to be honest, I also wasn’t capable of writing such a letter. How can a mother say, with finality, that this is the last time that she loves her son? I’m not even good at saying goodnight for the last time, each night. No wonder he pops out of bed ten times, just to get one more kiss.
I could never write that good-bye down. Whatever I said, whatever words I chose, it would never be enough. There aren’t enough treasure words in the language to express how much love he needs from me; or how much he’d need from me after I would be gone. There wasn’t a way to express how much I felt that I would need to give him, enough to last the lifetime that I’d be missing.
Language is a powerful tool. We have words for everything, but we don’t have words to express the pain, and the frustration of this. There’s the enduring story of how Eskimos have a hundred words for snow (they really only have 50); so, why is there only one word for love? And, why is there no word for this kind of love, and this kind of desperate need to express it? And, it certainly seems like there should be a separate word for the fierce devotion that parents have for their children.
I Googled terminal moms who’d left letters for each year, each birthday, each milestone. But, I couldn’t figure out a way to express my love in a way that was right for him. Collin is different. His milestones will be different. Will he go to Prom? Will he get married? Will his milestone be that he wins a Nobel prize, instead? I dream big for him; and, shouldn’t I? What if I write him a trite letter that tells him to pin a corsage on his date, and to be chivalrous; but, not about how proud I am of him, as he takes the oath of office, either as President, or as an FBI agent, as he’s so keen on becoming lately?
While these women’s stories were touching, they seemed like a Lifetime movie; they were foreign and unreal. Collin isn’t all the way done yet; how can I write to him in the future? All I know about my ten-year-old, fourteen-year-old, or twenty-year-old version of him is that I’m proud of him and that I love him. Letters to that version of him are otherwise blank. His path is unpredictable, just like Collin. One of the reasons I love him so much, and treasure every second of every day with him, is that he surprises me.
My shy boy, who clings to the idea that to go unnoticed is the key to life, came home during the last week of school and announced, as he climbed into my lap for comfort, “I told Alex S. that I like-like her.” He boldly, without comment, and full of bravery, announced his crush to a girl. She ran away screaming, of course, and thus ensued a great game of chase, because, after all, they are nine. He’s full of these kinds of surprises. How do I predict what letters to put in a little lifetime file-box for him?
This puts aside that that I will miss all of those things; and, that he’ll miss me. How could he know, in words that don’t exist, that I love him so fiercely that I’d imagined that the only reason that I was so sick was because I made a deal with the universe, trading all the pain he’d ever face for an infinite amount of pain and suffering for me. Some days, it was the only way to endure my suffering, to imagine that it was so he wouldn’t have any. It made me feel willing to take any amount of pain, with bravery, despite knowing the deal was imaginary. If I had to die, to leave him, the only way for me to be okay with it, was to tell myself that it was for him.
But, how was I going to write goodbye, when I knew that I wasn’t going to be there to explain it to him, to help him navigate how difficult it would be to face it alone? It was a paradox to explain in words. He’d need me to help him be without me. How could I guide him through it?
I didn’t want him to hold a letter, even if he was old enough, or if he knew it was a treasure, because that would mean that he knew it was all I had to say. I didn’t want him to feel alone, when those words weren’t enough. I imagined him holding a letter, and I didn’t want him to read my words, and not have my arms around him, when he’d already faced so many years without them, and had so many left to go.
So, I didn’t write the letter. And, if I have another surgery, I probably won’t write one then either. I love my son too much to say goodbye to him. Instead, before both surgeries, I crawled into bed with him, and held him, for hours. I stared at his face, and stroked his not-so-little-anymore-head. We chatted and giggled about farts, puns and tickles, until we fell asleep. If anything were ever to happen, that’s what I hope he remembers; I hope he remembers that the last thing I wanted to do was be with him, for as long as I possibly could, and that I wanted to fall asleep, with him in my arms.
Oh, and to say good-bye to Bryon? That’s literally impossible. It’s like saying goodbye to yourself. For both surgeries, as they wheeled me away, I screamed, “I love you!” over and over again, until it went dark. It’s just too ridiculous to say goodbye to your own soul, so I won’t even mention it.