The Weight On My Back

“It feels like saltwater in my veins,” Layla says. “Cold and gritty.”

I hold her other hand, the one not attached to the arm with the IV drip. “Did you knowthe salinity of ocean water and our blood is the same?”

“You’ve told me that before, but I don’t think it’s true.” She squeezes the rubber ball in her other hand.

“I read it somewhere.”

“I think it’s one of those things that sounds good, but it’s not really true.”

I want to say, How’d you get so smart? Layla has always been one step ahead of us, the kind of child that lets you see the world in a new way. “She’s nine going on fifty,” we say when describing her to new acquaintances who ask if Karen and I have any kids.

I look over at the IV bag. “Only 200ml left.”

She glances up. Too quickly to read the markers on the side of the bag, but enough to show me she’s listening. Her hand pumps the ball like it’s her own heart, each squeeze another pulse, another push, each one determined but never desperate.

When Layla appeared on the scene, our friends teased us about having a “change of life baby.” Karen and I were married for ten years before she came along. I’m sure our friends thought we would never have children, but we wanted to wait until things settled a bit before having a kid. We should’ve known better; life never settles down.

On the television mounted up in the corner of the room, CNN reports about an airliner shot down by a surface to air missile over the Ukraine. The missile, they say, contained an explosive core surrounded by two mantles containing preformed mine fragments. These fragments were in the shape of cubes or bowties and penetrated the aircraft when triggered by a proximity fuse. The Boeing 777 carried nearly 300 people and none survived. I look around for the remote and wonder why anyone would leave CNN on in this setting. It seems the barrage of catastrophes—mass shootings, mudslides consuming villages, ships lost at sea—are the last thing someone enduring treament would want to watch.

#

On the way home, Layla runs her fingers through her hair. “Hair loss is likely,” Dr. Bridges had said when we discussed treatments. We stop by A Stich in Time, a sewing shop near our home and wander among the bolts of fabric. Her fingertips trace designs and she uses the back of her hand to test suppleness. She doesn’t seem to find anything she likes, and her hands drift back to her hair flowing over her shoulders. “Can’t find anything?” I ask.

She shrugs and meanders off on her own. Her tenth birthday less than a month away, and I’ve struggled with what to give her. Every time I think of a DVD, a game, a cute plushy, a book she’s mentioned, it falls flat and I imagine disappointment on her face. On one hand, I know she’ll be gracious and thank me for whatever she unwraps, but on the other hand, I know the only thing she wishes for I cannot give.

She decides on a hot pink furry fabric that looks like hair for a Sesame Street Muppet. Her hand runs over it, smoothing the fabric one way, and then pushes it back the other way so it stands tall and then folds it over her fist, as if it’s a little head. “This is what your hair looks like when you wake up in the morning,” she says with a grin.

“Well at least it’s not pink,” I say.

“Yeah, fuchsia wouldn’t work with your skin tone. You’re an autumn.”

I am an autumn. I’m not sure what she means, but I feel the gentle shift of age, the change of seasons from summer to fall in my essence. The slowing of my reflexes, the aches in knees once springy and nimble on the basketball court. Greying temples never bothered me, but the subtle sag of skin under my chin—a reminder of my own mortality—crept up and caught me by surprise.

My daughter is a spring, too young for her leaves to be falling.

Last summer, before the diagnosis, we were in a swimming pool and Layla attached herself to my back. “I’m a barnacle,” she proclaimed. I burbled into the water, making a motorboat noise with my lips, and pushed off the side and ferried her to the shallow end. Her breath and giggles in my ear. I swam the length of the pool with her arms around my neck, pushing harder, each stroke defined as her weight slowed me down. I hadn’t expected to struggle.

We leave the fabric store and drive home, her purchase sits on her lap with one hand hidden in the bag. “I’m going to make a hat like DJ Lance Rock,” she says.

“That’ll be fun.” I Remember Yo Gaba Gaba! from her distant past.

“Do you think it’ll come back?”

I look over at her and see the tape wrapped around her forearm holding a wad of cotton. “Will what come back?”

“My hair. ‘Cause if it doesn’t, I’m thinking about different things I could do.”

I like Layla’s imagination; it’s a place where we can escape. “Yeah? Like what?”

“Maybe tattoos,” she says.

This gives me pause, but I play along. “You could tattoo a map of the world so your head would be like a globe.”

“Nooo.” She laughs away my idea. “Hands. One on each side so it looks like someone’s holding my head.”

I nod and like the idea of a permanent embrace.

“Or eyes,” she says. “I could have eyes tattooed on the back of my head. No one would stare at me that way.”

“Are you sure about that?”

“When people stare, they always look away when they see you looking back at them.”

“Normally, you have to become a parent before you get eyes in the back of your head,” I say and smile.

Layla turns and looks out the window. I’ve gone too far into the future, planted the idea of a motherhood that may never be realized

#

We pull into the driveway and I push the button that opens the garage door. I park the car and turn off the ignition. “Okay, kiddo,” I say and move to get out of the car, but Layla sits, holding the fabric in her lap, stroking it. I know she wants to say something, so I let my hand drop from the door handle. She never needs prodding when something spurs her mind, so her reluctance means it’s something serious. Since her diagnosis we have focused on treatment options, doctor’s appointments, logistics. All small steps in the process. We keep things as tightly packed as possible, but occasionally things poke out. “Are you all right? Is the medicine getting to you?”

She wants to nod, it seems to me—perhaps that’s just wishful thinking—but her head tilts to the side and she looks at me. “I’m sad,” she says. “About all this.” She picks at the tape around her arm. “And about what’s going to happen.”

“Honey—”

“It’s okay, Dad. You don’t have to.” She opens her door, gets out, and enters the house before I have a chance to say anything. Karen has the same ability to disappear when she wants to end a conversation. It’s a punctuation mark: a full stop, a dead battery you can’t turn over.

#

I went to a lecture by an economist the other night. Going to a lecture, especially by an economist, is not something I usually do. Nausea had besieged Layla that evening, and when a friend called and asked if I wanted to go I said yes before I knew anything about the speaker or topic. I told Karen I had to do a favor for a friend. She looked at me and read the lie on my face but still nodded her assent.

The economist spoke about the economics of immigration and focused on the determinants each immigrant faces. She termed the factors as Push, Stay, Pull, and Stay Away. Push factors might be civil war or famine, while Pull factors might be peace or personal freedom. “Each choice,” she said, “is predicated on the perceived—not actual—costs associated with it.” She used this model to explain aspects of the refugee crisis in Europe. “Why,” she asked, “do some choose to leave everything behind and forge into the unknown, risking their lives to cross the Mediterranean Sea, to risk starvation, assault, or indefinite internment in ill-equipped camps, to face the ridicule of xenophobic politicians?” She continued: “And why do some choose to stay amidst a warzone and suffer the ravages of brutal dictatorships or radical insurgents?” It all boiled down to the survival of the family, no matter the personal cost.

Her words echoed in my head as I tried to go to sleep that night. As a child, we never immigrated anywhere, but we did migrate. My father was a corporate gypsy. Whenever the word transferred popped up at the dinner table, I knew to expect a purge of toys and clothes, packing up everything else, and saying goodbye to friends, neighbors, and teachers. “So long. Nice knowing you,” became a familiar refrain. I left the known and headed into the unknown many times. Still, I had the stability of a family. My mother stayed home with me until I entered sixth grade. My father, when not traveling for business, ate at home every evening. My siblings tortured me on a regular basis, like any good sibling. And through all the moves, I always felt my parents knew best. It never got easy to leave people I cared about, but I did learn how to say goodbye.

When Karen and I discovered we were pregnant—a big surprise—we talked a lot about our childhoods and how we wanted to raise our child. Someone, we decided, would be a stay-at-home parent. Karen had the professional job with benefits; in the end, the choice made sense.

In shops, I carried a diaper bag with Layla strapped to my chest. At playgrounds, I sat on the benches as the only adult male. Mid-week and mid-morning at the grocery store, I pushed Layla in a race-car grocery cart. Mothers, at first surprised, often commented on Layla’s smile; a clever ruse for a doting father. In their eyes I could see the desperate need for adult conversation, maybe even adult male conversation. We’d chat about the kids for a moment or two—asking about pediatricians or some new developmental toy, Leap Frog or something of the like—but then it’d turn more personal. “You’re so lucky to have time with your daughter” and “Most men I know couldn’t handle it for a day, let alone full-time,” were repeated phrases. Invariably, it’d get around to, “So what does your wife do?” I lay before them as an open book. A stay-at-home dad, while initially interesting, didn’t hold much fascination beyond a few minutes. The real mystery, it seemed, sat with Karen. How did she escape? Is that the right word? Sometimes, though I didn’t want to admit it, I felt the same curiosity.

#

Five weeks have passed and Layla’s fourth round concludes tomorrow. As predicted by Dr. Bridges, her hair thinned considerably. While she brushes it she stops and looks at her hand; a wispy ponytail hangs from it. I’d done my best to prepare her, but she’s still surprised. She drops the brush, goes to the bathroom, and shuts herself in. I expect to hear crying as I place my ear to the door, but I just hear the faucet running. I wonder if she’s picked up her mother’s habit. Even after twenty years of marriage, whenever I’m around Karen turns on the faucet every time she urinates. Initially, I thought she felt embarrassed by the sound, but now it seems more likely to be a physiological aid. I listen to the water and place my hand on the barrier between us. I want to speak to her through the door, to tell her it’ll be all right, but I know I have to believe those things if there’s any chance of convincing Layla.

Inside the bathroom, the water shuts off and I stand away from the door. I expect her to come out but nothing happens. I stand there so long I become self-conscious. The silence makes me imagine that she’s no longer on the other side of the door, that she’s left this world behind. As much as this imagined loss pains me, I can’t help but think of what my life has meant over the last nine years. If she’s gone, what would I have to show for all my time, effort, and love? Would it mean anything to anybody? I move away from the door, feeling embarrassed in an empty room.

When she finally comes out, her bald head blazes in sun-shy whiteness.

#

We are driving to another appointment with Dr. Bridges. She’s completed her last round and now we’re hoping for good news. Layla sits in the front passenger seat, though she’s too young and too light if the airbag were to deploy. But I have trouble taking my eyes off her now. I stand in her doorway at night and watch her sleep, and I’ve set the hallway mirror up at an angle so I can peek down the hall and see her reading about Ramona Quimby in her beanbag chair. Though I could do the same with the rear-view mirror in the car, I prefer to keep her in my periphery.

In front of the doctor’s office sits a modern sculpture, a copper-colored orb of sorts; it’s placed amidst a small rectangular greenspace formed by a white concrete retaining wall. Layla glances at it as we pass, but doesn’t say anything. As we enter the doctor’s office, people in the waiting room smile at the pink fuzzy hat she’s fashioned. It’s like a cloche, tight around her crown and a low slopping flair of a brim. She likes it because she can hide her eyes if she decides to. Once we’re called back, I feel bad news before Dr. Bridges says a word. He wears a smile that doesn’t touch his eyes. He fidgets when talking about Layla’s prognosis with her in the room, but long ago she insisted. “It’s happening to me,” she said. “I have a right to know what’s going on.” Karen and I agreed, though Dr. Bridges held no enthusiasm about the idea.

“Well,” he begins, keeping his eyes on me. “The numbers aren’t looking so good.”

“What’s the next step?” Layla says before I have a chance.

Dr. Bridges adjusts himself in his seat. His elbows are on the desk and he holds his hands together as though he’s making a church and steeple. He bows his head and touches the steeple to his lips. He lifts his eyes and looks at Layla for a moment and then to me. The way his fingers are laced, I can tell there are no people in the church.

“There is a trial,” he says. “Layla might be a suitable candidate. But it’s experimental.”

He’s not optimistic. It‘s on his face. He’s a man who’s had this conversation before, telling parents a catastrophe is their new reality, and while he wants to extend some sort of confidence—to give the illusion at least—I can see it’s hopeless. Still, I push forward. “What do you need us to do?” I ask.

“There are no guarantees,” he says.

I nod and see Layla in my periphery. She’s nodding too. We gave up the notion of guarantees the first time we visited the oncologist. Then she leans forward, pushing her hat back a bit so he can see her eyes. “Even if it doesn’t work for me, could it help someone else?” she asks.

“Perhaps,” Dr. Bridges says.

We walk out of the doctor’s office and into a setting sun. Layla hands me her hat, climbs up onto the retaining wall, and walks through a little patch of grass to where the sculpture of the orb sits. The metallic sphere glows with end-of-the-day light. A deep, concave portion at the center of one side narrows into a hole that goes all the way through. Layla buries her face in the cavity and peers into the undiscovered country. I see the back of her bald head, a bright white pupil in a dark eye.

“What do you see?” I ask. I wait, but she doesn’t answer. I think about climbing up and looking at her face from the other side of the orb, just to be playful, but then I see her shoulders tremble, and I know she’s crying. Her resolve through it all surpasses anything I could’ve maintained. As her tears drip from the bottom of the sculpture, I sit on the edge of the retaining wall and place her hat on my head, pulling the brim down to hide my eyes.

#

Nine months later, a package arrives. Too much life in the interim clouds my memory and I don’t recognize the return address. I open the small box and see two pendants. One is a dolphin, Layla’s favorite animal. I ordered it for Karen, and now I’ll have to be sure to mail it to her. The other is the size and shape of a quarter. The outer edge is ringed by oblong scales that surround a rostrum, a beaklike projection that looks like a clam shell or a closed eye. It’s a barnacle sculpted by a jeweler from compressed cremains. I pick it up and am surprised by its heft. I run a colored string through the silver eyelet at the top and place it around my neck. After a moment, I move the pendant around. The cord feels like it might be choking me, in a feeble sort of way, but the weight on my back feels good.

Penn Stewart lives and writes in Wichita Falls, Texas, where he teaches creative writing at Midwestern State University. He is the author of the novel Fertile Ground, and his short fiction has appeared in Word Riot, Literary Orphans, Night Train, Front Porch Review, and elsewhere. Learn more about Penn by visiting his website: www.pennstewart.com