My husband Tom and I ate pizza at the kitchen table as our 3-year-old daughter lay dying in her bedroom.
Act normal — then your only child can’t possibly die.
I was doing what I’d done throughout Jillian’s chemotherapy, two stem cell transplants, radiation and surgeries: Get some sleep, and eat, because she needs you in one piece.
You don’t believe your child will die, until she does.
She had been in remission from the neuroblastoma that silently grew in her adrenal gland as a baby, but just six weeks earlier, the seizures began, and the cancer spread throughout her brain, like fine grains of sugar.
Impossible to remove.
That final morning I found her in our hallway, frail and grayish, without her usual brown-eyed sparkle. She flicked the light switch on and off, over and over, then entered the garage and stood in the corner. Horrified, I realized her brain wasn’t functioning properly. The day I’d been dreading had come.
Tom slept with her the night before.
“She woke up this way,” he said, with a piercing wide-eyed glare, conveying words he couldn’t say.
We guided her back inside.
“Let’s go swimming,” she mumbled, staring at the light switch.
Those were Jillian’s last words.
Just three days before, she swam in our pool with friends, pretending they were dolphins, giggling for tortilla chips. How I wanted to turn back time.
Tom carried her into the family room and laid her in her spot beside the television, on a pile of comforters, with her pink security blanket and stuffed animals. He played her favorite movie, “Homeward Bound.” Instead of watching, she cocooned into herself.
Lying next to her, I cradled her and inhaled her neck, a sweet scent of blueberry bubble splash.
“I am so sorry this is happening to you. I’m so sorry,” I whispered.
Eyes closed, she patted my shoulder, once, twice, three times. Her tender touch spoke to me.
“It’s OK, Mama. I’ll be OK. You’ll be OK.”
She was comforting me as I attempted to comfort her. I held back the tears welling in my eyes.
Jillian had a forgiving nature, more like her father than me. But it’s not OK for a child to be tortured and then die. It’s not OK.
“Sure, sure,” and “It’s OK,” were two of her mantras. She held no grudges against cancer, often telling doctors and nurses that she missed them. When a child once trampled her sandcastle at the beach, she said, “I think it was an accident.”
She had a calming energy about her, as palpable as any Zen master’s. It was greater than the strength and wisdom that cancer delivers. She was born with it and somehow never lost it.
Hours passed while she lay motionless. Tom finally lifted her and said, “I’ll take her outside for some fresh air.”
I followed, unsure of his thinking. With her head draped over his shoulder — her wispy golden hair fluttering in the breeze — Tom held her near the deep end of the pool. Her feet dangled in the warm, blue water for a moment. Suddenly, she flinched and curled into a ball. His last hope, dashed.
As he carried her to her room, her head flailed, almost hitting the kitchen cabinet.
“She’s in pain,” he said, his face as pallid as hers, aging before my eyes.
I desperately wanted to be there for Jillian, but an internal struggle took me somewhere else, a place where this wasn’t happening. I battled with myself to remain in my body.
The hospice nurse arrived with morphine and seizure medication, and the frenetic IV scramble began.
I called my in-laws.
“Jillian is dying. Come over now,” I said. “Bring pizza.”
They were in Jillian’s bedroom with Tom’s brother Bob and the nurse, while Tom and I ate at the kitchen table.
Pizza is associated with fun times. Tom and I ate pepperoni and green olive pizza on our first date. I had never tasted green olive toppings before, but I liked the saltiness. I knew Tom was the one for me, but I had no idea where our journey would take us.
Pizza crust was one of the first hearty foods Jillian gnawed on as a baby. On her last birthday, she wore a black velvet leotard covered in shimmering rainbow-colored butterflies. She gobbled her pizza, her cheeks full, her eyes sparkling.
Jillian will never taste green olives on pizza or have a first date, or a fourth birthday.
How could I believe that the normalcy associated with pizza could change what was happening in the next room? The math did not add up. Pizza equals joy. Pizza cannot equal death. So maybe she can’t die while we’re eating pizza.
Bob came and told us Jillian’s breathing had slowed. The others left her room, heads bowed, tears flowing as we entered.
The three of us lay on her purple-and-pink-hearts comforter for the last time, as the Winnie-the-Pooh characters on her wall held a silent vigil. We each held one of Jillian’s hands, like we had so many times before.
Back then, we called out, “One, two, three, jump,” and swung her through the air as she giggled.
But now, the only sounds were her gasps and the morphine pumping. The air seemed thicker than normal — a heavy holiness. I imagined my mother, waiting for her on the other side of life.
Jillian’s lungs filled with fluid as her labored breaths became further and further apart. Unsure of what to do, I said, “Go toward the light, Pumpkin.” My last crumbs of mothering.
“I love you with all my heart. You’ll always be in my heart.”
“Yes, go toward the light,” Tom agreed, as if we had something more to teach her. “We love you.”
I patted her shoulder and said, “It’s OK. You’ll be OK. We’ll be OK.”
She struggled to breathe one more breath. Then stillness. The energy left her body and rose above us somehow. Tom and I fell on our knees beside the bed and sobbed. Through my tears, she looked peaceful, even content. She wasn’t suffering anymore, and for that I was grateful.
Tom doesn’t blame himself for Jillian’s illness and death. “We did everything we could,” he says. He focuses on the beauty of dying at home, surrounded by family. I focus on the shame of eating pizza while my daughter was dying, the shame of outliving her.
Maybe someday, I’ll forgive myself.
Sylvia Alvarez Johnson, who has a Ph.D. in psychology, is an author and clinical psychologist. After years of private practice, she now focuses on writing and group events. She and her husband, Tom, facilitate couples’ workshops across the United States. Her PsychologyToday.com blog, “A Mindful Grief,” showcases some of her published essays. She is a winner of “Best of Nonfiction” at Eckerd College, Writers in Paradise. She is seeking a publisher for her memoir, “Why Jillian: An Extraordinary Life in Three Years.” Contact her at SylviaJohnsonphd@gmail.com.
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