Author: sehaldorson

I write narrative nonfiction/lyrical memoir. I'm the mother of a special needs child and the wife of a cancer survivor, and I work in publishing.

Last Night

~ sehaldorson ~ Leave a comment

 

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.

 

Zombie Star

~ sehaldorson ~ Leave a comment

There’s no way back believe me/
I’m writing you from there.

~Jorie Graham

I’ve been using you. I’ll fess up. I’ll play it as it lays. I’ve used you to feel significant again, to shine brighter than my own flat self. A penny no matter how tarnished gleams after time on the train track. A balloon is no fun without air. But now I feel myself slipping, just one last grain of sand slipping down the slick funnel, just one skyscraper lost in a horizon of metal and glass. Once the Chrysler Building was the shit, you know, the bees’ knees. Once it held significance. Now it is a hobby horse I still ride, a strawman I’ll argue as if I could win, if only I knew what I was arguing for. I feel small, there I’ve said it. I am dwarfed by the looming statues of twin monoliths: cancer and disability. I hate to say it but maybe I am Fitzgerald’s goddamn boat. (How many of the faint-hearted have claimed the same?) I am buffeted, and the green light, well I’m rowing against more than the current, more than the wind. I am rowing against anonymity. I heard love ride the air like an echo, and I chased it. I cupped it like water in my palm. Dare I say I am the rainbow that needs more than to be the treasure itself? I thought to have love was to be something at a time when I was nothing more than a plate for food, a table for the plate, the floor for the table, the earth for the floor. Settle it all upon me and I won’t shift, won’t tire. But take me for granted and I’ll forget I’m here. I’ll forget that maybe I was supposed to be dessert, if only someone had thought to take a bite. Still I will be sweet. I can hardly complain. There’s no telling what else could go wrong if I so much as make a peep. I am both the girl and the closet. The baby and the blanket. I am absence. I am the dark. And maybe it’s enough to be a thought, a star long extinguished and glinting only as memory. Careful. If you blink, I might miss me.

Big Hat Mama

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Perhaps another mother, pulls out a storage box of her child’s preschool art and looks with affection at the figure-paint swirls, the hand-shaped turkey, and the foot shaped chick, the stick-figure drawings (obviously an aide helped guide his hand on that one) and tissue-paper leaf collage, and the last-remaining kidney bean or pasta shell glued to construction paper, and reminisces about the years that have flown by. But I see no difference between the art my son made in kindergarten and that which he makes now, at 10, much like there is little difference in him, his abilities.

Except that’s not true–at least back then, he made a novice’s noble effort at the figure-paint swirls, the hand-shaped turkey, and the foot-shaped chick, the stick-figure and tissue-paper leaf collage, and the last-remaining kidney bean or pasta shell glued to construction paper. Then, art was new, and not just one more thing that is hard to do. Some might say he regressed; I think he’s bored of his own limits, like I’m so often bored by them too. Now I’m lucky to get a markered line from top to bottom of a blank notesheet pad.

Though I do have a scribble drawing hung on my refrigerator, like any other mother would do. White paper with indecipherable swirls, a free-form Spyrograph. On it, my son’s teacher translated the circles. I would have never been able to tell, but she drew arrows, labeled them: Big. Hat. Mama. She says he told her what he had drawn, and who am I to argue. Though I know my son, and I know, sometimes, the words he says are not the words that are in his head. But it’s the only portrait I have from his hand, so I hung it up because it means that he was thinking of me when he was away, at school, making art, no matter his level. And maybe nothing else matters to me or to any other mother.