I have Chiari malformation. This means, basically, that my skull is too small for my brain. Among other symptoms, it causes crippling headaches, and can lead to paralysis and death if left untreated. Currently, the only treatment is brain surgery. I’ve had two very serious brain surgeries in the past two years.
Prior to my surgeries, I was an English professor, working full time. I was a busy mom, a gym rat, and a marathon runner. I was an artist, a writer, an avid reader. I was an “everything.” Then I got sick, and everything stopped.
But being a mom doesn’t stop for anything.
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 my son, before my operation. This woman was a lovely student, except for the fact that she’d just made me cry in front of my class.
I’d thought about writing that letter every day since my surgery was scheduled. I had 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 no final words, at least not on paper. He’d have nothing, no physical “thing,” to put in his hand.
But he’s nine, and he’s autistic. He collects random objects, and calls them treasures. I don’t get control over what he treasures. He’s lost, or eschewed countless 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, 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 treasure and of what is important is fleeting, but fierce.
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 10 times, just to get one more kiss.
I could never write that goodbye 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 was gone. There wasn’t a way to express how much I felt 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? 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?
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 the 10-year-old, 14-year-old, or 20-year-old version of him is that I’m proud of him and that I love him.
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 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? 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 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. 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.
According to the Centers for Disease Control, these are the leading causes of death for infants and preschoolers. Awareness is key
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