What Each Other's Hearts Needed
By Autumn Gentry
@autumnbgentry
Content warning: this essay references the loss of a child.
It was my third day of sitting in that room. Just sitting with the exhaustion. No thoughts. No more tears. Just emptiness. I listened to the clatter of dishes downstairs, the distant running of my children’s feet, and the slow, rhythmic pump of the oxygen tank. Camping mattresses still lay on the carpet from another night of waiting. Her favorite things gathered by her brother a few days ago remained scattered around her mattress—Spirit the horse, her pink ball, a pair of scissors, sunflowers, a karaoke microphone, and her Daniel Tiger figurines.
Isla had been drugged into a coma-like state for the last few days—the only thing that had finally eased her pain. As I stared at this foreign figure laying in bed, I told myself I should feel a feeling. Any feeling. But, at some point it just became too hard to feel. The adrenaline from the year puttered out. The anger at the system that failed her, gone. The passion I had to find another way—to keep hoping—used up.
Four weeks ago—after she spent a full year living in the hospital, handling chemotherapy with nothing short of deep joy, and bravely pioneering the way for other children with an immunotherapy trial—a routine lumbar puncture caused her to develop a hematoma at the base of her spinal cord. We were told it would slowly paralyze her. Hours after the procedure, we received the additional news that her leukemia had grown exponentially.
Just like that it was done. We were done. This was all done, and we were powerless to stop it. Isla had weeks, not months, to live. Weeks. She would not make it to her fourth birthday. She would die. She would die after a year of hospital isolation, countless procedures, blood transfusions, infections, ICU stays, COVID visitor restrictions, experimental therapies, NG tube placements, and fighting with every fiber of her being. There was nothing more to do than live big with our remaining time together.
But those final few weeks were not filled with bittersweet moments checking off a bucket list of adventures or the quiet assurance of sleepy cuddles. There was no space to share with her all those stories, secrets, and dreams I’ve always wanted to share with a daughter. No, we couldn’t even have that.
Those weeks were stolen from us by uncontrolled pain shooting through her spinal cord. They were devoured by the relentless cancer ravaging the body and mind of my child. Those four weeks were filled with my child in agony. Those weeks, I helplessly watched her suffer—not understanding why she couldn’t move or control her limbs, why the pain wouldn’t stop, why her mind was so fuzzy, why she was trapped in this body that was failing her.
In those weeks, she rejected me. She would scream at me, lose it when I’d walk to the edge of her room, demand I get away. She wanted to be left quietly alone in her pain. She rejected most everyone at some point during those weeks, but I was the one who remained completely pushed out. I was the target of her anger.
Now, here she lay—practically unrecognizable. Her skin graying, her eyelids swelling, her little body contorted in an unnatural position—neck stiffly down, legs sprawled open. Foreign sounds coming from her lungs, they were beginning to fill with fluid now. How was this my child who just weeks earlier chased nurses down halls of her unit and put them in “jail”? The child who filled a room with her laughter and clever antics. The child who engaged any awkward resident who entered formal and reserved and left with a belly laugh and a promise to return soon.
Where was my Isla Bear? Those weeks of rejection sucked away our intimacy. Now, there was only emptiness, lung gurgles, and waiting.
I released the phone I had been hiding behind—as if escaping into it would save me from my own bitterness. I inched toward this stranger and lifted her sheet up to peek at her legs. No sores yet. I felt her skin still soft and warm, tracing the little veins that had started to rise to the surface. I ran my hands through her hair. It was a few inches long now. Wavy and brown, curling up slightly over her ears. Another month and I would have been able to slip a clip in it. I wiped the drool that was beginning to crust at the corner of her mouth and pressed my lips against her still squishy cheeks.
I reached for a book she had obsessed over for weeks—The Sneetches and Other Stories. Thumbing through, I found her favorite, “What Was I Scared of?”—a gentle tale addressing fear of the unknown. The story follows the narrator repeatedly meeting a pair of pants with “nobody inside them.” He is terrified of the empty pants—dodging and hiding from them at every turn. In the end, he realizes the pants are just as scared of him and they become friends.
Maybe, I was trying to find a way to connect with her. Maybe, I was sick of not knowing what to do with myself. Maybe, I felt this is what a good mother does at her child’s death bed. Whatever it was, I read. Letting the soft waves of her hair pass between my fingers, aware of her uneven breaths, I read. I used special voices, inserted dramatic pauses and laughed as I exclaimed those things only she’d interject during a reading.
I heard the stairs creak and release, creak and release. My husband was coming to take his shift, but I kept reading. We were almost to the best part—when the pale green pants began to cry. When he got to the top of the stairs, he checked the oxygen tank and quietly opened the door to take his place by the bed. I was just finishing up,
“And, now, we meet quite often,
those empty pants and I,
And we never shake or tremble.
We both smile
And we say
’Hi!’”
I closed the book, set it down, and pressed the button on her pain pump—releasing another dose of relief before the shift change. As I leaned forward over the bed to help my stiff body rise from the floor, her eyes—those big, beautiful brown eyes—flashed open. Her arms bolted toward me in tandem. Her hands grabbed my neck and, with what would seem like super-human strength from such a frail body, she pulled me down toward her with a determination so familiar. She wrapped her weak arms tightly around my neck in the deepest, strongest, most desperate hug. As she hugged me, I looked up and locked eyes with Michael. Tears streamed down both our faces and he nodded at me. We both knew it. This was Isla’s goodbye.
Until the moments I read to her, she had been a shell of my child laying on that bed. Her true self long smothered out by opioids and anti-psychotics. But, the familiar sound of my voice, the gentle touch of my hand in her hair, the old jokes we shared, the assurance that no fear is stronger than what is true—they brought her back to embrace me one final time. To remind me of who she was. To show me the rejection she put me through was not her but her body animalistically trying to survive despite the mind having already begun its retreat.
She weakened again. I laid her back down, kissed her forehead, and whispered my love to her as she looked hard into my eyes. Finally, her eyes fluttered, and she fell into her final sleep—letting go and accepting the peace her body craved.
Isla had been fighting death for days. Resisting. Pushing hard against it. But after that moment of reconnection, she chose to not fear what was happening to her body and the unknown that lay ahead. She chose to rest—knowing she had been deeply loved and she too had loved in just as great a measure.
It was all just a moment. But that moment was everything to both of us. In the end, whether we realized it or not, we knew what each other’s hearts needed.
Guest essay written by Autumn Gentry. Autumn, a former elementary teacher and stay at home parent, resides in her hometown of Wauwatosa, Wisconsin with her husband and two sons. She began writing as she stumbled through parenting during her daughter’s journey through cancer. Grieving the loss of Isla Arden (3.5 years old), who passed away in the summer of 2020 from relapsed and refractory Acute Myeloid Leukemia, has brought her down a road of self-reflection. She is still looking for the next right thing.
Photo by Lottie Caiella.