I love my son most when we are alone and he is quiet. I hold him–a heft and thickness to his limbs now that surprises me though I’ve watched him grow, inspected him even, twelve years now–against my chest and the ache of loving him burns through my center like I’ve downed a tequila shot and eaten the lime whole. I want to fold him back into my belly, return him to his point of origin. I could be his chrysalis. I could rebirth him and give him a chance. I could rebirth him and give myself another chance. It’s not romantic, but this special kind of motherhood rarely is. It’s pulsing blood in my jaw and nerves revealed only in the twitch of my eyelid. It’s still shit and drool and too-sharp nails and sometimes bites and lots of shame, and twelve years of tiredness that makes my body ache and all I can do is lay myself on the floor and wait to feel myself again. I’ve read that the center of a star is held together only by the force of its own gravity.
I lift heavy weights because I can no longer lift my son. I’ve grown stronger over the past year: my quads have a stone-like quality under the skin and fat. I think of myself as an ice cream cake. Hard center, soft exterior. I enjoy the bulge in my bicep. I like to flex and find the crease between bicep and deltoid. But I still cannot lift him. I work at the gym for a month or more and I injure myself. Elbow, wrist, knee, back, and have to pull back my training for awhile until that injured part of my body heals, and then it’s up the hill again. But I still can’t lift him. He is now 100 pounds which is a lot but still little, and yet like the proverbial sack of potatoes, N doesn’t know how to use his own body to help me. I think of figure skating pairs, the man lifts the woman, but it is the woman’s core, the woman’s complimentary tensity, that assists in the lift and lightens the man’s load. N just hangs, an armful of wet towels. There isn’t one moment of hysteria; it’s a slow drip of hand-numbing anxiety: this could be it. No matter how hard I train, how strong I become, I might never be able to lift him again.
And again I can see her on the distant shore, the maybe other me who might decide not to feed her son in order to keep him small, in order to deny him a growing body because his mind does not keep apace. She thinks of him as a baby, she thinks of him as a toddler, she thinks of him even last year when he was eleven, when she could still lift him. No, that’s not right: she wishes for him to be again eleven. Is this empathy for the woman who tosses her child off a bridge, or the man who engages a shotgun to keep the future from ever arriving for his child and then himself? Is my fear of the future and my inability to keep lifting my spirits, my hope, just hysteria? There was a time when it was still ok for him to go and play on the playground, because he was small. There was a time when it was still ok for him to climb into a shopping cart and ride instead of walk. He is small for his age, but it is only a matter of time until he is taller, thicker than she is, stronger, and she fears that’s when the hyena she hides will burst from behind her hyoid and devour all hope. She is certain that when he is 14 and 17 and 22, he will still want to play on the playground, ride in a shopping cart: it makes her sick how his world will get smaller as he grows, it makes her pulse with a keening need to keep him to stay small. For there to be symbiosis between his mind and his body. She is a mother who might do whatever it takes to stop time.
So instead I try to grow. The longer I can lift him, the longer he can stay little, and there is little chance I will become her.
The Mother Bed
Last night I put my arms around him as he lay in bed, eyes on his tablet, knees pulled up to his chest. Such long legs, getting thicker by the day, but I can still see his baby self in his skin. I’ve given him his seizure medications; I’ve washed his GTube insertion, applied Desitin, a square of gauze. I know I should tend it twice a day, but once is all the time I’ve got. I’ve dosed him with Melatonin in hopes he sleeps the night away, no tossing and turning, no cries in the night, no hours of wakefulness that have come in swaths since he was an infant.
We still share a bed even though he is eleven. You may find that inappropriate. Certainly some people do. Sure, he hasn’t had a seizure in a year and a half, thanks to the nutrition via his GTube we assume, so maybe he’d be safe on his own, but how can I know? Always our bedsharing was a necessity born out of fear. His seizures most often happened as he moved between levels of sleep. They were silent and too long, not violent and quick as most people imagine, as is often shown on TV. Instead, he just grew stiff, unresponsive. While I’d have loved to believe some kind of inner instinct would rouse me to some unusual silence across a hall, real life doesn’t often work that way. Otherwise there would be no death by middle-of-the-night fire, or while-they-slept burglaries, or children who go missing as though taken in the rapture.
What about your husband, your marriage, people ask me. And maybe I can’t explain that this is not a zero-sum game: both of us benefit from our son staying alive. The fear of SUDEP, which sounds like a cold medicine, but is how people with epilepsy sometimes die, still lingers. I have always been afraid that the one time I look away, he will suddenly disappear. Not his body, but his life. Evaporation. Ether. One time he had a seizure and I was alone with him and his lips turned blue and he stopped moving entirely, and that’s a thing that happened, and reason is no match for memory.
So bedsharing became the default, but is now a necessity because I fear the exhaustion that switching him to his own bed will bring on. When he wakes up at night, he wants a comforting hand on his back. Or a change of clothes if he pees through his night-time pull-up. Or for help finding his comfort blanket. I have grown better at falling back asleep after such disruptions, but rarely do I get a full night. When we begin to train him toward some additional independence, surely I will get even less. You may think that’s selfish, but eleven years is a long time to be tired, and sanity is a commodity I’ve learned to hoard.
I told someone today that I’d never had a driving need to be a mother, and the decision to have a baby had been more strategy than longing. On the verge of thirty, in a happy marriage with a man who deserved to be a father, I asked myself this: on my death bed, what I would regret more, not having children or having them? The answer seemed clear at the time, and so we did. (Before you ask me, we stopped at one, because he has been enough work and worry for two.)
When I hear stories of women who suffer due to childlessness, I can’t find a way to put myself in their shoes. When I hear women celebrate motherhood, they are speaking a language that sounds like my own, but the meaning gets lost in the distance between their mouths and my ear. I have a friend who has prosopagnosia, the inability to recognize faces, and that seems as good a metaphor here as any. It’s like I recognize the individual features of our common experience, but I can’t put them together to form a picture that is identifiable to me.
Simply, I don’t know what it’s like to be purely glad to have had a child. I sound cold, I know. But I can’t claim joy at having brought a child into the world who will struggle as mine struggles. That would require me to go to great length of Pollyana-ish denial, and I have far too much guilt for that. Yes, I am a better person. More compassionate, more selfless, more multi-faceted. And yes, he perfect in his imperfections. And I do often wonder when thinking about belonging, about helping him find a place in the world, if our culture is more the problem than his disabilities are. Sometimes I try to challenge people in rethinking the way they think about seizures, about special needs, that euphemism I have grown to abhor. But I would trade all of those personal gains, all of my drop-in-the-bucket activism, for having given life to a child who will be able to talk, to read, to shop, to drive, to work.
You see, I am ambivalent about being a mother, and as my child grows bigger but doesn’t truly age, I expect my feelings to remain complex on the matter. But after years of chastising myself, I now know this: it is possible to hold these two truths in my heart at the same time. There is nothing I love more than this child who I would never have decided to birth had he not appeared to me and bade me love him, like a stray at the door whose scars and ferocity are a lesson, not a reason to send it back in the rain.
I love my son most when we are quiet and I hold him in my arms and my heart, and the ache of loving him burns through me like I’ve downed a tequila shot and eaten the whole lime both. That’s not very romantic, but the visceral rarely is. Motherhood rarely is. For me, it is still poop and drool and too-sharp nails and sometimes bites and lots of embarrassment over his public behavior, and always, always, tiredness. My pride cringes as I tell you we still share the same bed. But I would take a hundred more years of all of those struggles, ironically to outlive my child whom I have always feared would die, because I have never been so afraid to leave someone I have always be destined leave.