“Hiding.” Avery covered her eyes with Blankie.
As usual, she refused to come out until JT had spent 20 seconds pretending to look for her. Then she threw Blankie to the side and a triumphant “Ha!” erupted behind her toothy grin.
She lunged toward the edge of the gurney and curiously peered over the metal railing. JT intercepted her and attempted to distract her with his iPod.
My heart rate quickened. I clenched the railing and wondered how, over the course of 48 hours, we had become the family to which a terrible thing had happened. Two days ago, Avery was a seemingly healthy two-year-old, though her hands had gotten shaky and she was exhausted. She suddenly couldn’t remember the alphabet. Her pediatrician recommended an MRI to rule out the worst-case scenario. The rest happened in an awful instant. The MRI showed a dark mass on her brain. The doctor said she needed surgery immediately. The oncologist told us there weren’t any pediatric neurosurgeons in Alaska. A couple of hours later, we were rushed to the airport and medevacked 3,000 miles from Anchorage to San Diego.
Avery was fingering JT’s iPod when the operating room nurse announced that one of us could carry her in. “It’s best if you’re calm and can reassure her.”
I looked questioningly at JT who shook his head no. He told her he loved her, and then turned away so Avery wouldn’t see him cry. He knew, like I did, that cutting a tumor out of a child’s brain comes with high risks. He knew that in a few hours we might not recognize our daughter.
Avery flashed her big, blue, electrified eyes and clung to me like a baby monkey as we trailed the nurse down the corridor. I wanted to cry into her hair, tell her I couldn’t believe she had brain cancer, wail to the universe that no child should have to go through this and especially not her—so innocent, so sweet. Instead, I replayed the nurse’s words in my head: calm and reassuring.
“I love you, Monkey,” I told her as I carried her through the double doors.
Silver metal domes hung from the ceiling, scalding us with light. Fifteen people shuffled through the room in surgical gowns, paper hats, and cloth masks. Avery clutched my back with her fingernails.
The anesthetist directed me to set her on the metal table. He strapped down her arms and legs and positioned her head between cushions. I held her hand and obediently told her it was going to be okay.
“No like,” she whimpered and fought against the restraints.
When the anesthetist said he was ready, I kissed her forehead and forced a smile.
Her eyes pleaded.
My god, how can I do this to my little girl? I trembled.
Her frightened eyes screamed betrayal. Then her body went limp.
I sat facing Avery in the hospital bed and paged through a book of pictures from Alaska.
“Here’s one from our bike camping trip last summer,” I said. “Remember how you rode in the seat on Daddy’s handlebars and we camped by the river? You loved snuggling in the tent, didn’t you?”
She looked away, then winced in pain and tried touching her head, but couldn’t lift her arm. It had been four days since the surgery, and she still wasn’t able to sit up or swallow. Hospital staff wheeled a gurney past the sliding glass doors with what looked to be a dead little boy.
Yesterday when JT explained to the nurse that Avery had never been inside for more than a day and suggested it would be good for her to breathe fresh air and feel the sun on her face, the nurse just shook her head. “Yeah, that’s not going to happen.” The list of hospital rules that we’d consented to, but not actually read, was apparently non-negotiable.
Surgery had been more difficult than expected. The tumor sat on her brain stem and was embedded in the cerebellum. The doctors monitored her recovery, and in a couple of weeks they would determine if, and how quickly, the tumor was growing back; then, they would tell us if she was a candidate for chemotherapy or not.
I wrapped my body around her and she leaned into me.
“You are tiny, but you are mighty,” I told her.
“I’m so proud of you.”
Avery pinned Blankie under her palm and fell asleep. Her arms and legs dangled over me like ropes. Her head, matted with unwashed hair, smelled sweet and salty, like raisins, ocean air, thick dog fur, sweet-scented wood. I felt the weight of each inhale on my belly, her hard skull against my ribs. Imprinting every detail felt like an urgent matter. I implored myself to cherish, without distraction, this love in my arms, but my mind wandered. I couldn’t get past the fact that I was her mother and couldn’t protect her.
Hours later, hungry for lunch, I shifted to the side of the bed. Her eyes followed me, making it hard to pull away. As I turned to leave she whispered in the saddest voice, “I love you, Mommy.” That was the first thing she’d uttered all day.
She owed me nothing, especially after what I’d put her through, yet her words washed me in a wave of forgiveness. Her gratitude, a gift I would never be able to repay.
“Go home!” she cried a month later when I came into the hospital room.
She’d been in the Pediatric Intensive Care Unit for 31 days connected to beeping machines and screeching alarms. The pressure in her brain never stabilized, so she was restrained and prodded, starved and sleep-deprived. Somehow, she had survived five brain surgeries. She sat up straight and angrily tore at the cords connected to her chest and arms. She clawed her fingernails across her face and scalp trying to rip out the draining tube. She hadn’t interacted with another child in over a month.
I slid into bed with her, began breathing deeply and audibly, and gently brushed the tears from her cheeks. I explained that we were trying really hard to leave, that we were just not able to go home yet.
JT and I wondered what exactly home meant to her. Our house in Alaska? A healthy body? Her pre-cancer life? The spirit world? Did she know she was dying?
“Home!” she screamed louder and clenched her hands into small fists.
“Go. Home. Please!” Her face flushed red. Her blue eyes were oceans overflowing.
The fact that she assumed it our choice to imprison her in that sterile room with fluorescent lights that never turned off made every other failure in my life seem inconsequential.
Three days later, after the doctors installed a shunt that drained excess cerebral spinal fluid into her abdomen, we were discharged, and we proudly filed toward freedom. I carried her to the rental car, watched her eyebrows raise when she saw the car seat.
In that moment of our release into the world of the living, it felt like she might have a chance. Friends had encouraged us not to give up hope. They told us the power of positive thinking would prevail. But hope felt heavy. Hope felt like fake jewels, like wanting to be something it wasn’t. Acceptance had seemed more useful during that month in the PICU, but now that we were free, I hugged Avery tightly and reached out for hope.
During that first week of freedom, we pretended we were a normal family. We pushed Avery’s stroller along a path by the beach and talked about teaching her how to swim.
Two weeks later, I carried her back to the hospital for an MRI that squelched whatever hope I’d cultivated. The image showed her cancer had spread aggressively and was untreatable.
“A couple days to a couple months,” the doctor said.
I cried into her hair. “Don’t worry,” I whispered. “I will never bring you back here.”
Weeks passed and Avery continued to live. Drivers revved their engines in front of our southern California rental house. Gaggles of vacationers hollered to one another and shouldered surfboards and coolers of cheap beer.
I covered Avery in a hat and sunglasses and carried her to the beach where JT poured sand on her toes and she stared sadly at barefoot children running through the surf. Eventually, she pouted and whispered, “Go home.”
At the rental house, she tried drinking apple juice but sputtered. She cried in frustration that she couldn’t swallow. Her hands shook so much she couldn’t hold the cup.
A train hurtled by and shook the house. I just wanted it to be quiet.
I looked at JT, whose face was in his hands. I asked what he was fantasizing about.
“A snow-covered mountain to climb,” he said. “With no one on it.”
I dreamed of gentle slanting twilight on the tundra behind our home, and curling up in the soft heather with Avery, letting her lick wild blueberry juice from my fingers. But our medical team said she was too fragile to fly.
Bedroom fans swirled hot humid air. I caressed her forehead, wiped sweat from her upper lip. Her high-pitched shriek, “Go home!”, echoed off the bare walls. I looked into her eyes and tried to reassure her. “You’re doing the hardest thing a person can do.”
Through it all she had asked for only one thing. I didn’t know which of us wanted it more.
After three months, we could no longer afford California summer rental prices and the toll the traffic and noise were taking on our mental health. JT convinced our insurance company to pay for a medical flight home to Anchorage.
Our hospice team doubted she would survive the flight.
We gingerly loaded Avery’s car seat into the plane, and two nurses strapped it to the gurney. They spoke rapid Spanish while they connected Avery to suction cups that were wired to the monitor that would track her vital signs. They banded her ankle with a blood pressure cuff and taped an oxygen meter to her big toe. I asked the nurse if he really needed to do that, but he didn’t understand me.
I sat beside Avery, and JT sat about four feet behind us in the rear of the plane. Medical equipment and our meager belongings were stacked all around him.
The little jet rattled as we took off and banked over the hot shimmering desert. I watched the numbers blink on the monitor. Her heart rate rose a little, then fell. Every time a number changed, I held my breath. I kneaded my wet palms along my pants. How was I going to watch these numbers for the next eight hours?
Please make it, please make it, I recited over and over. Her heart rate rose, and the monitor beeped. The oxygen reading suddenly dropped, but it didn’t make sense. She looked exactly the same. The nurse refastened the oxygen meter, but the monitor still showed a low reading, so he punched it, like a vending machine.
For the next six hours I stared at her chest, anticipating each inhalation. Her eyes rolled back. An undeniably thin thread attached her to the world of the living.
I wrung the skin on my hands raw, cursed every minute for passing so slowly. When Avery woke, JT paged through Chicka Chicka Boom Boom and sang the song about the monkeys jumping on the bed. Drugged into a stupor, she gazed straight ahead, glassy eyed.
In terms of wishes, there wasn’t much left. A year ago we hoped she would get the hang of riding a tricycle. We planned to live with her in a foreign country when she was 12. We’d been saving for college. Now, all we had left to hope for was a peaceful passing. I didn’t want her to die strapped to a gurney on a noisy airplane.
Avery drifted in and out. Her breathing quickened, then slowed. But she kept breathing. As we flew into Anchorage’s airspace, my eyes welled with tears.
JT carried Avery up to our home in the mountains. “Look,” he showed her, “here’s the table where we eat dinner and watch the chickadees at the bird feeder.”
Avery had lost the ability to speak, but she tracked his words with her eyes. Her eyes widened ever so slightly when she noticed the flowers, her books, and the piano that JT had played for her every night before bed.
Outside on the deck, all we could hear was the distant trickle of the creek. For the first time in four months, Avery’s shoulders relaxed. The three of us embraced, and I shuddered with competing waves of relief and sadness. My heart sang and stung at the same time, knowing we had made it home and knowing it was her final journey.
One month later, around midnight, JT steered the car into the mortuary parking lot. He drove very slowly. I could hear the tires crunching over gravel. A single bulb illuminated the door. He nosed the car beneath the awning and shut off the engine. Every cell in my body told me this was wrong. My job as a mom was to hold her, protect her. Now I was expected to carry my daughter into this building, turn and walk away. I sat in the car and held her tightly to my chest. JT walked around the car and opened my door.
I slowly swiveled to face him and set my boots onto the black pavement, which was wet from melted snow. I glanced around. The city streets were deserted. No voices. No engines. JT waited patiently for me to stand up.
Avery’s head flopped awkwardly across my shoulder. I readjusted and walked slowly toward the entrance. Inside the dimly lit foyer stood a tall young man with an ill-fitting blue suit. He wiped his long black hair away from his forehead and gave us a soft and welcoming hello. I held onto Avery more tightly and cried loudly into her hair. He and JT stood watching me.
I looked over my shoulder to see if there was another room I could duck into, where I could avoid bawling in front of them. There was no place to go. As my sobs echoed in the foyer, I blurted out, “What happens now?”
The man seemed only mildly surprised by the question, and in retrospect I see that there was only one thing to do—hand her over. But at the time, it seemed like there should be more ceremony to it, or some explanation. I don’t know why I thought there would be an explanation after the last five months of no explanations.
“Well,” he said gently, “I’ll take her.”
And then seeing that maybe I needed more, he added quietly, “I’m going to bring her into the back and lay her on a sheet.”
He watched as I absorbed the information, gagging on the thought of her in the entrails of this funeral home on some cold metal gurney.
“It’s a clean sheet,” he added.
The three of us stood awkwardly in the foyer as I caught my breath. There was nothing else to do but transfer Avery into this man’s arms. He cradled her cheek against his upper arm so that I could give her one more kiss.
JT handed him a little square of Blankie and asked him to keep it with her.
In the car, I inhaled damp, heavy air. I turned the setting on the heater up but couldn’t seem to get warm. I slouched in the passenger seat and stared silently through the windshield.
Eventually, I turned to JT. “Who does that?”
JT refocused his gaze on me.
“I mean, whose career path leads them to be the guy at the mortuary at midnight taking the dead bodies?”
We laughed as if the dam of grief had cracked. It was a high-pitched, desperate laughter, but our bodies shook with relief.
Then we were still again, with quiet tears trickling out the corners of our eyes. A minute later, JT said with a glimmer of incredulousness, “I wish he hadn’t said the part about the sheet!”
The laughter came out in gulps. We looked at each other and suddenly couldn’t stop.
“Until he mentioned it, there wasn’t any doubt that it was clean,” I confessed.
I grabbed a wad of tissues and wiped the tears from my face.
At home, I took two Advil PMs and slept on the remaining three quarters of Blankie. I slept with Blankie the way Avery did, stuffing it under my chest and resting my cheek on a satin corner. Morning came anyway. It came even without her.
Her ashes amounted to about two cups and filled the ceramic urn that a friend had made. I struggled to believe that my daughter—with her complex personality, bright laughter, and soulful eyes—was reduced to a bag of ashes. Sifting through them, I found a sharp staple, half an inch long. I wondered how many of those there were.
I put on my jacket, sat outside and cried into a wad of tissues. I’m afraid I’m going to forget what it was like to be your mother, forget your smile and what it felt like to hold you.
I miss you, Avery. I collapsed into sobs. I’m so sorry, so sorry, so sorry.
JT and I climbed the snowy mountain behind our house. JT carried the ashes in a plastic bag in his pocket. Then, half way up, he handed them over and I carried them under my jacket, against my heart.
Lichen-covered rocks emerged through snow patches, and we speared the semi-frozen tundra with trekking poles, propelling ourselves up the steep slope. The moon hovered over the valley. A bald eagle sailed over the ridge. I couldn’t remember the last time we’d hiked together.
I remembered being on that same hillside last year when Avery ran downhill and leapt into my arms. She showed me her purple-stained fingers and, when I asked how the blueberries were, her eyes widened in wonder. “Yummy!” she exclaimed as she took my hand and tugged me toward the blueberry patch.
At the top, JT and I took handfuls of ashes and released them over our favorite spots along the ridge. I couldn’t imagine ever wanting to let go of the memory of Avery, but I knew that I needed to begin letting go of the debilitating pain. As hard as it was to part with the little that was left of her, letting her ashes fall through my fingers was a cathartic expression of my grief. Not that it was easy. Tears blurred my vision as I sprinkled white chalky remains over the tundra.
As we hiked down the mountain, the sun sliced through the clouds. We flustered a flock of ptarmigan and crossed bear tracks in the snow, and I had a thought that maybe Avery was all around us. And suddenly there was this: a book I’d read to her dozens of times called Meet Me at the Moon. The story is about a mama elephant who must climb the highest mountain to ask the skies for rain. When the baby elephant begs her not to go, Mama tells her to feel her love in the warmth of the sunshine, hear her voice in the wind, find her company in the stars.
My pace quickened. All that time I thought the story was for her. Maybe Avery’s spirit had returned to an even better place; maybe the beauty around me was her way of letting me know.
For a second, that’s what I thought. But by the time we got home, the moon had set behind the ridge. My feet were wet and cold, and all we had to carry in was an empty plastic bag.