Last Night

 

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.

 

Something We Ought to Do

It began to snow, and I thought we should do something that people do when it snows. So we laced up stiff boots, leashed up our dogs, and made for the mounds of white that had already turned our neighborhood into a movie set, like Jimmy Stewart might come shooshing down the sidewalk (in a parka and cross-country skis instead) and we will sing, “Buffalo Gals, won’t you come out tonight, come out tonight, come out…” Or maybe you are Jimmy and I am Donna Reed, and if you were romantic, you’d promise to lasso the moon, but instead, you are quiet and maybe just following along.

The fresh snow–white and silver glitter flickered in the streetlights, layered on the dogs’ backs like inadequate sweaters–, ahead of us was still untouched, ready for our pack to leave tracks, evidence we’d come out into the world, rather boldly into the cold, because sometimes life becomes a movie scene when you venture out into it.

It ended the way most things end. No matter the splendor, my toes got cold, and I got tired of the fleet wind on my face, before we’d even crossed halfway into the park. No doubt you had more stamina for the weather; nature never seemed to dismay you like it does me. So I posed a plan as I so often do: Let’s take the dogs home, I suggested, and walk a few more blocks to that Italian restaurant on the corner. We’ll walk there, like people do in movies, like people who have a watering hole. God knows, we live in Milwaukee; it’s a shame not to have a corner bar to call our own.

The restaurant was warm and warmly lit. Amber lamps glowed on polished glasses lined up on the bar. My wine was red and your pasta thick. It made the walk through the snow and the park in our early-winter stiff boots all the more idyllic, like there might be movie music soon swelling, and the speed of the action would slow just enough to draw out the moment before the two love interests kiss. Eating eased your irritation with me for pulling you out of the house, like a dog on a leash, to fulfill these ideas I have of things we should do, because it’s what people do, and not always because I long to do them.

Things change as they so often change. Those dogs are long dead, and our black and white mutt hates to get cold or wet so there is little point in going on a leisurely walk in the snow with a dog that prefers dry paws. But I suppose he isn’t too unlike me. I only make myself go out if it seems like something I should do. And sometimes it’s worth it because of moments and memories: that night, that snow.

Now, you can’t be out in the snow, well, the cold, and no sun for you either, which makes going out in March in Milwaukee nearly impossible. Maybe in summer you can walk through our park before dawn, before the sun is up. Photo-sensitivity from the chemo is a danger, but so is everything, it seems.

I shouldn’t have been worried that we’d run out of scenes. Sure, we don’t amble about the neighborhood much any more. But when the doctor told me you had leukemia, I wondered what my next lines should be. And when I told your parents, who had already lost a son, that their son had leukemia, I don’t think I was speaking, but my idea of speaking the words was doing the miserable work for me. So many moments these days, when it is easier to become the watcher and the watched.

All through this past year, I’ve put myself in widow’s dress time and again, but it seems as though you’re going to make it and it’s funny how I know less about this old role of being your wife than the one for which I’d been practicing unwritten lines. We have a man from Europe to thank for his stem cells, for your survival. And maybe someday we will meet him–A handshake? A hug?–just like in a movie. It’s definitely something we ought to do.

Lamentations at the Tomb

The smell for one thing.
Open the door and the odor
of mold hits you square
in the face. Say you
forgot something. Find sanctuary
in your car, your oh-so-clean
car, even the lingering smell
of McDonald’s lunch a relief.
(It was a long drive
to Dad’s. Only one reason
you rarely made it, traveling along
I-90 through LaCrosse, a glimpse
of the Mississippi and glacial-less
bluffs beautiful, too brief.)

The smell is the basement’s
annual spring flooding,
destroyed drywall downstairs. Descend
the wooden stairway
of the rectangle ranch
you grew up in. The extent! Weird
enough what he had saved. A baby
carriage, Lite Brite,
one of a pair of Rock ‘em Sock ‘em Robots,
school papers and child art, wilted with wet,
stacks of books, pages dried together
like shipwreck survivors
clinging to one another,
a Mexican tooled-leather purse, an old one-eyed bear, your hope
chest. All eroded
by the creeped-in water, not just
this year, but years. Saved
yet not salvaged.

Bugs, but you see those. Sills pilled
with Japanese beetles that look
like harmless ladybugs, but have their own
particular stench if you touch. Daddy
longlegs weaved homes into corners,
fly corpses suspended. The black
and red armor of boxelder bugs
in every corner.
Rodents too. Holes chewed
into walls. Insulation seeps out
like dirty cotton candy. If you are brave
enough to look for a water glass, you will see evidence.
Of mice creeping in and out of cupboards,
over mismatched dishes, Tupperware,
weaving amid yellowing boxes of
Morton’s salt, Hamburger Helper,
and amber bottles of pills
long since emptied.

Also you see your vain
efforts to help. Not enough
in the end, or maybe since
the beginning. You hand-wrote recipes
and taped them to those cabinet doors,
yellow now with age.
A soft blanket
you gifted at Christmas, crusted
with spilled food and obscured by 
shed dog hair, spread
over a sofa. The nice television is still nice, but
the pale blue recliner you bought with your brother
has gone limp with overuse. Strangely
you are reassured
that the casket you both chose
is quite lovely, pale blue satin to match
his eyes, though his eyes,
you both agreed,
were donated fast.

(There was nothing
you could do. There was everything
you could have done. But anger, well,
its seeps and rots too.)

Here there is no resurrection
long in coming. Roll the stone
away, and there is only a failed shrine
to keep your mother’s memory alive, what she left
before
she died. He shut his eyes
to decay in favor of dreams of days
when her collection
of tea cups, washed to gleaming,
posed on the polished table, debutantes awaiting
the Ladies’ Aid. Maybe he remembers
how he would cross the kitchen
in farm boots of hard leather, and steal
one more cookie, maybe the same kind
his mother had made
him when he was a young boy
coming in
from the fields.

(You will never know.
You will never stop knowing.)