The costume arrived in a recyclable envelope the color of dried mud. It fell forward onto the atrium’s tile floor with a flump as I opened my apartment door on my way back to the hospital. The black arrow of its logo stretched across the front in an eyeless smile that I tore down the middle, eco-friendly filling falling like confetti around my feet. It clung to the costume’s clear plastic packaging in dusty clumps.
An empty oval of non-face stared up at me from the cardboard insert. I held it away from my body, not wanting to touch it, not wanting to invite in whatever specter it was supposed to represent. I stuffed it into my rolling duffel, buried it beneath my daughter’s clean pajamas and the art kits she’d asked me to bring to help occupy her during yet another extended hospital stay.
My bag left wet tracks on the hospital’s floor as the automatic doors parted and I flashed my parents’ badge. The morning security guard nodded me through and I tried not to think of the costume jammed amongst the detritus of clothing and supplies. It felt like contraband, like an obscenity I was whispering under my breath, hoping no one could hear.
At 8 years old, I knew my daughter would want to trick or treat around the hospital’s fifth floor with the rest of the inpatient kids, and I exhausted myself with the mental gymnastics of how I’d permit her to dress up for Halloween without upsetting the other families, not to mention the staff.
I couldn’t allow her to parade around the cancer ward, past parents of kids who probably would not survive the year, dressed as a Grim Reaper.
***
When my daughter was diagnosed with leukemia, it wasn’t discussed that kids in treatment often spend holidays in the hospital. No one explained to me that we were almost guaranteed to overlap an admission with at least one Christmas or birthday or Thanksgiving. Cancer doesn’t wait– treatment can’t either.
I’d resolved to putting off any holiday decorating until my daughter could be home for it, even if it meant Christmas decorations went up on the 23rd or Easter baskets arrived a day or two late. I kept our supplies sorted and stuffed in large purple rubbermaid bins, stored on the top shelf of a hall closet. Each item was a memory, a fragment of past holidays spent together: cookie cutters used to stamp out stockings and sleighs that were then baked and frosted and delivered to neighbors; placemats shaped like shamrocks and a homemade shoebox trap for when the leprechaun made his annual visit; motion-sensored light-up pumpkins that howled and cackled whenever it sensed movement. It hardly seemed possible to have a holiday without the family traditions that brought us so much joy, and I wondered how we were supposed to celebrate anything when our reality was so unsettling..
I’d seen stories all over Facebook of window-washers dressed up as superheroes cheering up sick kids stuck in hospital rooms, or lines of toddlers dressed up as knights and Nintendo characters parading through hallways with their parents pushing polls with swinging fluid bags behind them. Pre-cancer, I’d heart-react, feel a little warmth bloom in my chest, and scroll on. Now that we were on the other side, I found these displays so fucking depressing. That was an hour of a sick kid’s day– the perfectly-curated highlight reel. The camera lens never hung around while we lived out the other 23.
I felt like I was standing on one side of a pane of glass looking out at a world which I had once belonged to, but now could only watch as it flowed past and around me. I started to resent parents with healthy children, strangers and friends alike. I stopped liking the photos my friends posted of their kids and felt angry when I saw them eating popsicles in the backyard or racing their siblings on their bikes at the park. The world didn’t stop because my daughter was sick, though I wanted it to. Cancer was the worst thing that had ever happened to our lives, and I found myself wanting it to impact the entire world the way it was impacting us.
Our inpatient stays were made up of long stretches of empty time filled with hospital machine sounds, treatment plans, and dying kids. It was bleak and terrifying. Spending a holiday in that setting felt unbearable. I watched the calendar each time we had an unexpected admission, hoping the sneaky neutropenic fevers would die down or infection would hold out.
When she was scheduled for a 28-day admission for immunotherapy, I marked the days with red marker in my calendar. If all went well she’d come home two days before Halloween. I willed it to be so. We were a Halloween family, hauling out decorations in early September, stretching fake cobwebs over every bush and shrub in our front yard and constructing graveyards out of foam board and tempera paint. I envisioned resuming that part of our life once we’d emerged on the other side of the cancer mess. A shadow crept along the edges of my mind– what if there is no other side? I pushed the thought out of my mind, breathing through the panic that rose in my chest like bile.
I focused my mind on getting my daughter home, willed it to be so even as I felt a twinge of guilt at my desperation to not be in the hospital for Halloween. I knew plenty of other families would, but I didn’t want to be one of them.
***
Any other year I’d be thrilled to see my child engulfed in too-long black robes, hood pulled low over her face, a plastic scythe swinging loosely in her small hand. I’d been goth-lite since middle school, and I raised my kids on oddities markets, visits to Philly’s Muütter Museum to visit the Soap Lady, and reruns of the inimitable Addams clan at all times of the year. My daughter kept a vial of bat ribs on her dresser, and my son spent six months insisting he be accompanied by a three-foot-tall plastic skeleton everywhere he went.
I loved encouraging my children’s morbid curiosities, which often mirrored my own. I was, as Stephen King says, born with a love of the night and an unquiet coffin – so long, it turned out, as that night wasn’t cancer eating away at the marrow of my kid’s bones; so long as the coffin wasn’t my daughter’s.
Arriving on the 5th floor oncology ward, I stopped at the nurse’s station to explain my predicament; she wants to put on her Halloween costume and scare everyone…but it’s a Grim Reaper costume. It’s the only thing she wanted to wear. I told her she can’t leave the room, but she can hide under her blankets and then pop out when people come in. Would you mind playing along? Could you come in and pretend to check on her and then act startled?
I felt stupid asking them to perform, but they all agreed. Another thing they don’t tell you when your kid is diagnosed with cancer: the answer to everything they ask for is going to be yes.
I scrubbed in at the sink outside my daughter’s room, cleansing whatever outside germs I’d unknowingly carried in on my hands. Chemo had turned her immune system to tissue paper. Everything was a potential threat. Sometimes during walks around the hospital, I stopped on a second floor hallway overlooking the lobby and watched people come and go. I’d think about the germs on every single person’s hands–everything being ferried in from the outside that could kill my child.
I scrubbed harder, digging under my nails, pushing the soap into every crevice.
My daughter and I had decorated her room the week before with pumpkin string lights taped to the thick plastic bedframe and bat gel clings on the windows. Dollar-store plastic suncatchers we painted together during idle afternoons hung in the windows and black cats made out of painted paper plates dotted the walls. I’d brought her a stack of Halloween picture books and lined them up in a makeshift bookshelf along her windowsill. I knew the decorations cheered her up, but to me it felt a little grotesque, like slapping a band-aid over a gunshot wound.
My daughter stood when I entered the room, her legs unsteady on the plastic mattress, her arms reaching out to me. Medication lines trailed from her like obscene, sickening tentacles. Mommy! she shouted, and latched on to me like a starfish. I thought again about the lobby full of people coming and going and the minutes I’d spent washing my hands just before. I held her, squeezing but not too tight, feeling her solid body in my arms even as they began to ache from the weight.
Mommy, did you bring my costume?
***
I looped the cheap mesh robes over her lines as the tubes pulled V’s in the hem and my daughter wiggled, trying to help but further entangling herself. I worked around her fidgeting, tugging and tucking until she was completely covered. She sat back, enrobed hands in her lap, and tilted the oval of her head at me.
Obscured by the black polyester robes of a costume that was probably a size too big, she looked like a cartoon. The mask dropped over her face like an executioner’s hood, covering it completely. The hood came to a point at the crown of her head and the sleeves billowed over her hands. Her face was hidden, the gray blankness of the fabric unsettling in the bright, stale room. She sat like a shadow—the tiniest Grim Reaper that ever darkened a children’s oncology floor.
I tried to tamp down my fear. Clear tubing streamed from beneath the hem of her costume, leading to machines that blinked and beeped ceaselessly, dripping sick yellow liquids into her veins. I knew it was my child sitting in the bed, but it also looked like whatever I imagined was coming for her. It was as if her dark summoner was looking out at me from the mask, laughing, saying, I’ll see you soon.
She pulled her blue blanket patterned with caticorns puking rainbows over her head and stilled.
Okay, ready! she said. Her squeaky little voice was muffled beneath the layers of fabric.
I sat back in the blue vinyl hospital armchair. How much was I inviting in by allowing this? What might I be foreshadowing? I was afraid to invite death into the room. I was afraid of what it would take with it when it left.
Mom! My daughter’s head bobbed up once as she did a little seated hop, impatient.
I pushed myself up and went to the door, pulling the paddle to un-snick the latch, and poked my head out.
Could you come in for a minute? I called to the nurses. I think there’s something wrong with her tubing.
They smiled as they lathered and rinsed at the sink.
Hell-OOoooh! the doctor called, her voice raised slightly, the corners of her eyes crinkling in a smile above her Paw Patrol surgical mask. Where’s my favorite patient?!
The beads on her eyeglass chain clicked together as she turned her head left to right and back in exaggerated arcs, pretending to look for my daughter.
Oh, I didn’t tell you? She went to the movies! I played into it, then. I wanted it to be perfect, wanted this memory to overwrite any trauma that she might have from the worst (but hopefully not last) Halloween of her life.
Oh, the MOVIES?! And she didn’t invite US?! the doctor acted incredulous, hands on her hips.
I think we’re going to have to have a talk with her when she gets back! one of her nurses chimed in.
I can’t believe she went without us! And I even brought my party shoes, they’re in my locker!
Well we’ll come back later and see how it was, I hope she’s having fun! They paused along the side of the bed, eyebrows raised, waiting.
An eruption of fabric and sound from the bed, then: RAHHHHHHHHHHHHHH!
The doctor jumped back, exaggerated, perfect. The nurses shrieked, then howled. My daughter lifted the blanket, then the fabric hood covering her face, and beamed.
Oh my GOODNESS, you scared us! The doctor rubbed my daughter’s bald head. The nurses fussed over her robes, telling her how cute she looked and how they really thought she’d gone out to the movies. My sweet, sick, maybe-dying child smiled and smiled and smiled.
On her way out of the room, the doctor handed me a stack of stapled papers—a common, expected gesture. I was Mom, and therefore always accepting stacks of papers. I placed them on the rolling food tray.
Read them over, she said, her eyes still crinkled in a smile.
***
Mom, let’s watch a movie! Let’s watch the Addams Family!
I coaxed the robes over my daughter’s head, careful not to pull her tubes, and folded the dark fabric haphazardly, wanting it out of my hands. I let the costume fall in a bundle onto the nylon armchair’s dented seat.
I climbed into the bed beside my child and looped my arm over her shoulders. Her head fell against the crook of my arm, her little body snuggled against my side. She wrapped her skinny arm around mine and held it to her chest. I could feel her warmth and prayed it was just the heat of the room and not a building fever.
That’s me!, she said each time Wednesday came on the screen.
That’s you!, I echoed. I tried to find comfort in the familiar– Wednesdays morbid quips, Morticia’s spidery elegance– but it felt grotesque, like returning to a beloved hometown only to find the downtown transformed into a sewage plant.
Nurses filtered in and out, adjusting pumps and hanging new bags of fluids, leaving cups of pills. They moved around us like ghosts.
Midway through the movie, just as Wednesday and Pugsley were winding down their gorey on-stage duel, my daughter yawned into my hand. The shadows under her eyes were dark and heavy. I coaxed her onto her side and tucked her stuffed bunny under her arm, pulled the hospital sheets to her shoulders and covered her with the puking cat blanket. The creatures leapt delightedly over the fuzzy rainbows, stars falling out of their tails in yellow and orange streams. My daughter closed her eyes, her lashes laying in dark crescents against her skin. I watched her breathing deepen and even-out.
What if this is her last Halloween?
The thought made everything feel fuzzy at the edges. That possibility had hung over every milestone, every holiday since her diagnosis– was this the one, was this the last one? Would there be a last Christmas, a last birthday? So much could happen in a year. I looked at the bundle of black robes on the armchair. What if next Halloween I spent all night thinking about how I’d let her wear anything she wants if she could have just one more year?
Anticipatory grief overwhelmed me. I didn’t want to imagine Christmases or birthdays without her. I also didn’t want to be surprised when it happened. I felt stuck. I forced myself to imagine the empty space in my life that she would leave, how I’d mark the anniversaries and milestones I’d never get to see.
I watched her sleep, her perfect doll-lips slightly parted. A rim of milky white swam beneath her eyelid, cut by a shred of her dark pupil—she’d always slept with her eyes open, something that still unsettled me. I checked one last time to make sure she was down, took the stack of papers from the rolling tray table, and let the nurses know in passing that I’d be down in the lobby.
***
I spent an hour alternating between sipping a bad coffee and pressing my forehead into the cool (germ-loaded!) surface of the atrium’s tables. I’d snagged the last too-sugary donut from the coffee hut’s foggy case, and the powdered dough dried in my mouth while the sticky white cream made my teeth itch.
I didn’t know how to be this kind of parent. Until this moment, I’d followed a prescribed path: packing lunches, ferrying my kids to and from school, serving balanced meals, running baths in the evening. I aspired to be unremarkable, as vanilla as the ice cream my mother served alongside her favorite Marie Calendar’s razzleberry fruit pies. I knew how to follow a path and fulfill the ordinary duties of motherhood. I did not know how to step into a role that required extraordinary feats of superhuman strength.
I wanted, more than anything, to leave the hospital and never come back. During long stays, I’d sometimes fantasize about throwing furniture against the room’s huge paned window until it shattered. Then I’d gather my daughter up in my arms and jump out. We’d run so fast and so far, I imagined, not even cancer could catch up with us.
An announcement over the hospital’s intercom brought me back. My nose was tingly and numb from being pressed into the table. I’d long-surrendered any preoccupation with what other people in the hospital might think of me when I left my child’s room to behave strangely in other places, but it occurred to me that I should show some sign of life, just to be safe. I raised my head, took another bite of the terrible donut, and turned the stack of papers over.
Enjoy Halloween! was scrawled in blue ink above DISCHARGE INSTRUCTIONS. I looked at my phone, checked the date: October 28.
I stood, leaving the powdery mess of my half-eaten donut on the table, and sprinted toward the elevators, the news that we’d be going home clasped between my palms like a talisman. It felt like a delusion. My kid would spend her Halloween Trick-or-Treating through her own town instead of along a nurse’s station in a hospital, and if she could go home this time, if she could make it out for Halloween, then maybe she’d make it through Thanksgiving, and then Christmas, and– what? Into the rest of her life. The hope of it filled me like helium, and I pulled myself down like yanking on a balloon’s string.
I shot through the elevator doors as soon as they opened onto the fifth floor. Swelling relief coupled with a searing selfishness bloomed in my gut as I passed the other rooms. There was the mom in the Eagles pajamas who offered me the last of the powdered creamer the morning before, her eyes red-rimmed above her paper mask. Another mom in the room adjacent recommended a true crime podcast I’d probably never listen to– she was stretched alongside her son, scrolling her phone, a superhero cape hanging from the medication pole above their heads.
There was a baby I hadn’t seen before sitting up in a bulky plastic hospital crib, feet kicking lightly in Jack-O-Lantern footie pajamas. The room was empty save for a nurse recording the baby’ vitals, and I briefly wondered after the parents and whether our paths would ever cross. Conversation on the oncology ward was sparse, all of us keeping to our own space as COVID raged outside the hospital’s walls and our immunocompromised kids fought for their lives within the studio-sized rooms. I didn’t need to know their names or what they did for work or who they were before cancer upended their lives. We were kin, connected by horrors that, for most parents, only ever haunted the furthest corners of their minds.
I sped up, nearly at a jog, and let the rooms blur as I passed. Guilt rolled in stomach like a stone, but a fluttering relief shrouded my chest and shoulders. We weren’t going to be one of those families that were stuck here. We were getting out.
My daughter was still asleep when I got back to her room. I watched her as I scrubbed in. She was still, her head had shifted to the side, her neck was stretched at an angle. Her arms hugged her stuffed bunny to her chest. The clear fluid lines stretched out from beneath the blanket, connecting her to the bags of medication that were saving her and killing her all at the same time.
One of the nurses had left a paper cup of pills on her rolling table. I’d have to make her take them when she woke up even though we both knew they’d make her sick, but it didn’t matter, I reminded myself, nothing mattered except the manic, pulsing hope that came with going home.
The costume was still in its puddle on the blue vinyl chair. It seemed to taunt me; whatever current of hope I’d ridden on my way upstairs dissipated. This was a flash in the pan, a thin, brittle thread that would eventually be swallowed by the enormous, insatiable appetite of her illness. We’d get this Halloween, sure, but then how many more?
I felt my eyes fill with hot, angry tears. I cried silently in the wash room while the water ran over my hands, the white soap foam swirling around the dark circle of the drain.
