In Iowa (Two Ways)

My writing instructor at the festival said a write finds form by the process of writing, can trust the creative process to yield the shape and pattern words should assume. I wonder if love is the same? If the act of loving reveals the shape of that love.

My love for my son is warm like hot honey tea, a belly-filled feeling, not a shape, unless the shape is the shape of me. I loved my mother: the curve of her tidy nails, coffee-smell teeth, white stomach folds, each petechia and freckle and insertion point of every insulin-streaming needle. I cannot re-love her now, yet still feel the pattern of her prayers like fingertip taps on my back. She drew me toward sleep by drawing shapes on my night-gowned back–a frying pan with eggs and bacon, our cat, a heart. My father, his hands. My husband a house. Not our house, but the home he builds around me. When I leave the door open in a rush, he never changes the locks.

I am greedy for love. Maybe it’s age, but I want to try love out on everyone. If I can leave love along with signing my name on the waiter’s receipt, I will. I will two-hand grasp the odd man’s outstretched hand after briefly meeting. Meet a stranger’s gaze with a grin. Maybe I’ll just repeat I love I love I love I love I love I love until my heart picks up the rhythm, picks out a desire line, beats one foot in front of another down a path leads me there to love, but I suspect will lead here to where I am. — What is a vessel if water refuses to fill it? — leads me to circle only myself.

Cosmogony II

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the light switch on makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the wonders of belief, the wonders of blood, the white and the red. One day, long before we knew Mark has cancer, something happened–his DNA and his environment meet, pressed, bang!–and, lo, he has leukemia.

Maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still here? How much of me is memory now too?

Home

(was Grounded)

He says, “Home,” and we don’t know what it means. He says it when we are at home. He says it when we are all together, my son, husband, me, sitting on the sofa, around the TV. He says it when his grandparents visit and it confounds them. “Home.” We say, “We are home, honey.” It’s not the answer he wants. “Home.” “Yes, we are staying home,” we say, thinking maybe he doesn’t want to go anywhere. It is a Saturday so no school, no therapy sessions, no sitter. He can’t say those words, so maybe this is efficient shorthand for his desire. We could go shopping, we could go to the park, or to an event for special needs kids, which are almost always on Saturdays mornings, but we don’t because the weeks are jam-packed and maybe we all just need a break from trying so hard. Maybe that’s all he means: “Home.”

Maybe he is talking to me when he says, “Home.” I rarely am. After I drop him off at school—his still-small hand in mine, his weighty backpack stuffed with his feeding pump and supplies, some extra pull-ups, some lunch he won’t eat, slung over my shoulder as it’s too heavy for him with his weak torso and stumbly gait to carry—I drive to work and spend nine hours there, sometimes more, doing what needs to be done. After, I go to the gym, or to play tennis. Often I stop at the grocery store, run an errand, meet a friend. Sometimes I have a drink or two on Fridays. My husband or the sitters have cared for him since the end of the school day, 2:30. I am rarely home before 7:30 and his bedtime is at eight.

At 8 pm, I once again I wrap my hand around his, support him as he unfolds his stiff legs from his usual cross-legged position on the couch, walk with him to the bedroom. A nighttime pull-up—thank god he hasn’t yet outgrown the XL children’s size yet—, some warm clothes as his figure is so slight he is always cold, melatonin to help him fall asleep or he’d be up for hours like he has been his whole life, his brain waves misbehaving since the beginning, and he curls up with his favorite blanket, now almost thirteen years loved, and descends hesitantly into sleep. I realize I’m little more than a token mother by normal standards. But I will spend the next ten hours with him and with luck he won’t wake to know I’m there.

I climb into bed next to him because I still don’t trust that his seizures are truly under control. Even his most recent tests show the atypical activity is still happening and happens most obviously when he sleeps. The shark is in the water. It’s been almost three years since his last one but I am well-conditioned to believe it’s only a matter of time. Seizures do that to you, create an environment of unsafeness, a standard of alertness, not unlike expecting a bomb to go off. My therapist called it PTSD, but that seemed somehow like I was appropriating someone else’s holy terror. Yes, he’s had a seizure on a plane, causing it to turn around mid-flight and return to the airport. He’s had one in a hotel in a strange city and an emergency team stormed our room and rushed him to a strange hospital we struggled to locate. He’s had ones that turn him blue, ones that wouldn’t end despite medication, some ending in a call to 911 and the lights from a first-responder fire truck and the following ambulance lit our street and woke our neighbors in the middle of the night. “Those poor people,” I imagine they said to one another. “There by the grace of God go I,” I imagine they meant.

We stopped trying to vacation. We didn’t even trust a day trip to an unexplored town, or a nearby water park. It became hard to leave the house if we didn’t really have to. At least at home, the curtains hid the worst, and our brave smiles did the rest. But at the same time, it became harder for me to stay in it. The walls closed in. The doorways shrank. The air grew heavy. Being unable to help my child, to ensure his safety, did something to my pride, did something to me. I began looking sideways at life, never wanting to catch its eye in case it noticed me and lashed out again, master to servant, wolf to lamb.

For the first 17 years of my life, I lived in the same house on land that my father’s family had owned for 3 generations. From as early as I can remember, I wanted to be anywhere but there. Not that my home was unsafe; just that it wasn’t ever me. I’ve been restless when it comes to houses ever since.

Like any other 20-something, there were numerous apartments, but I’m always a little shocked to say aloud to someone that I’ve owned four houses. We bought our first when I got tired of living in other people’s properties. Duplex owners had worn me out. We had no savings, but started circling houses for sale in the local paper, before, I hate to say, the Internet was anything more than AOL dial-up. I had heard about a neighborhood where all the gays had moved: cheap and ripe for reinvention. I got pregnant while we lived in our starter house, painted baby-poop brown, which featured a tiny shed in the back yard that once housed the previous owners rideable train engine. I was sure we needed a bigger house since this one had two bedrooms on two different levels. We were starting a family: we were going to need space. Lucky for us the neighborhood had boomed and we sold the house for double what we’d bought it for.

The problem with selling a house in an in-demand neighborhood was that it sold quick, and we struggled to find the next house, the house my son would be born in. We bought a four-square on a busy street that had pocket doors and a dramatic stair-case up to the second floor. The backyard was expansive. I should have loved the house, but it felt dark with its deep mahogany woodwork, high ceilings, four bedrooms, and the start of the seizures.

In less than two years, we were walking around the neighborhood and saw a for-sale sign. Mark ran up the stairs and peaked into the house, while I waited on the sidewalk with Noah’s stroller. “You’re going to love this house,” he said. And we bought it, selling our cavernous turn of the century house for a small loss. Our new house was my dream house. A 1020s California bungalow gussied up by a previous owner who had also been a carpenter. Classic stained glass windows, built-ins, light woodwork, plus a high-end kitchen with granite countertops and a Bosch dishwasher. I was in love. But our needs outweighed what the house had to offer. The stairs made the house unsafe for Noah; cancer made the house a hospital. So again, we moved.

Last year we moved into a new house. It’s big, too big for a family of three. But there is space, in the rooms and in the halls. Space between us and the neighboring houses. Space between us and each other. Space akin to breath akin to hope. For the time being, we’ve left the memory of his many seizures behind, and they have yet to darken this doorstep. Cancer too, for that matter, though there is now room for a lodger. I fear they both will catch up with us before long so I keep moving, superstitious of getting too comfortable, of safety denied. Maybe if we don’t stay too long, they’ll lose our scent. Maybe if I don’t stay still too long, I can dodge weight of my choices.

“Home,” he says, but I don’t know what that means.

Visiting

I was in the hospital for five weeks when I was ten. My left leg was being lengthened millimeter by monotonous millimeter. There, I met an Amish boy who had been injured in a farm accident. I don’t remember much about him, exactly, but my parents befriended his, and in the following year, we visited their homestead, ate jarred meat, and, when dusk fell, watched their many children put on a play from behind a sheet, illuminated shadows made from an oil lamp. I gave one of the youngest girls my favorite doll because the only dolls they had with were hand-sewn, awkward creatures more monster than toy.

I don’t remember what happened to the boy, if he recovered, or even if I spoke to him during our visit to their farm. My mother soon died and there ended our family’s relationship with anyone who required some effort to visit. But I wonder now if the boy struggled to reconcile his startling introduction to modern pleasures amid the unpleasurable at the hospital, if he ever, while back on his farm, wished he could return to those white rooms, to the dings of the nurses’ call button and the rattle of the IV poles and gurney wheels, just to taste some jello and watch TV again.

More often during my hospital stay, I visited a little boy who had been badly burned. His toddler body was covered in white bandages until they were removed, revealing his brick red skin, shiny as a newly polished floor. He had curly strawberry-blond hair, so sometimes he looked to me like he was still on fire. I was drawn to him, maybe to my own feelings of nobility when I persisted in staying in his room while he cried, which was most of the time. Or maybe I just stayed to witness a pain greater than my own.

A Woman’s Work

In this bleak midwinter, the women
set the table, breathe
deep the histories of their mothers,
their dreamed mothers,
put a roast on a charger.
Sound of Music on the television,
on the stereo
a scratched record
of The Mormon Tabernacle Choir singing
Handel’s Messiah.

On a day when it rains
rather than snows,
the women pour
cups of coffee, burn
toast in distraction, move briskly
from stove-top to counter-top to table
stirring roux, rolling dough, taping
corners of gift-wrapped boxes, set
the table for a feast
of memory.

In the memories
of their children, the women
strike a match, burn the day
like bright embers, like stars,
a pale glitter at dusk. Who knows
what might be remembered,
an extra scoop of cream, a present kept
aside until a quiet time–
“I found this
for you and thought
you might like it.”
alone, the threads
of bounty like sewing strings
knotted into being.

What lasts
is the work of women
who cannot know but hope
each note links
past to present, a song
through sorrow, a comfort
she might live
into her children’s
tomorrow.

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.