When my 3-year-old daughter, Jillian, died of neuroblastoma, I did everything in my power to work through my tremendous grief. I went to therapy sessions, attended support groups, did meditation and yoga, read, wrote, cried, and screamed. As a psychologist, I knew there was no way around the grief, only through it, but I secretly thought I could wade through it faster than most. I’d met people whose child had died as many as 10 years earlier who seemed to be stuck in time, as though their child had just passed away. I vowed not to become one of those people.
My intention to heal deepened when my husband, Tom, and I decided to have another child. I’d witnessed parents’ reactions to their surviving children. The siblings who remained never seemed to live up to the reputation of the one who’d died; there was a vacancy in their parents that couldn’t be filled by the living. Some enshrined their dead child’s possessions and couldn’t think of anything else, while others avoided the mere mention of the child. Even though I’d been thrust into the Dead Child Club, I wasn’t signing up for the Living Dead Society.
We discovered I was pregnant on the first anniversary of Jillian’s death. Our second daughter, Cadence, brought us back into a land of hope and joy. Despite my efforts, I recognized early on that there was a space in my heart, bound and sealed, reserved for Jillian. The hole was most obvious around holidays and anniversaries—her birthday, the day she was diagnosed, the day she relapsed, the day she died.
When Cadence approached 23 months, the age when Jillian was first hospitalized, irrational fears abounded. What if Cadence died? What if I died? What if Tom died? When she reached the age when Jillian died, I swirled in a torrent of what-ifs. Once, while Cadence and I were playing with Play-Doh, she looked straight at me and said, “Where are you, Mama?” Tears spilled onto my face; I’d become one of those vacant people, and she saw it. My unconscious attempt to protect myself from further devastation wasn’t worth the cost. When Cadence turned 4, my worries subsided a little. Now that she was older than her sister ever was, I relaxed; maybe she wouldn’t get cancer after all.
She learned to ride her “big girl bike” without training wheels at age 5. Tom and Cadence thought it would be a great idea for us to ride our bikes to McDonald’s. Although it wasn’t far, the sidewalk that led there extended down a busy road. I decided to shelve my fears and take the trip.
Unfortunately, the words slipped off the shelf as soon as our ride began: “Be careful;” “Stay to the right;” “Don’t do any tricks;” “Stop;” “Wait.” I made the child so nervous at a busy intersection that she accidentally veered into oncoming traffic. I screamed and Tom pulled her to safety.
“See what you did?” he yelled. He was right. I was shaken to the core by the power of my anxiety to harm my daughter. I had to do something about it, now.
I pulled out DVDs of Jillian and watched them alone. I saw myself slip away before the camera’s lens, slowly becoming a ghost of my former self as she was diagnosed, treated, and died. The joyful moments on film were even harder to face than the painful ones. I felt rage for the lives that had been taken away from me: my daughter’s, my own. I cried and screamed and cried. It wasn’t like I’d never done this before, but I was ready to work through a new layer. I realized that, until then, opening my heart fully to joy, to Cadence, would have felt like a betrayal of my firstborn.
In Patty Dann’s book The Goldfish Went on Vacation, she explains that many people are afraid to talk to children about death. When the family goldfish died, one woman told her child that it had gone on vacation, after flushing its remains down the toilet. My mother must have been trained at the same parenting school. When I heard the news that my grandfather had died, I began to wail. My mother said, “Don’t start.” Her words choked back my sadness. I hadn’t wanted to make the same mistake with Cadence, so I’d told her the truth. She’d seen pictures and snippets of the videos over the years and knew a lot about Jillian. I was proud that she often spoke matter-of-factly about the sister she’d never met.
One morning Cadence and her best friend, Emma, were on their way to preschool as my car’s CD player blasted Robinhood’s “Love Goes On and On.” It was one of Jillian’s favorite songs.
From my rearview mirror, I observed Cadence look up at Emma and say, “This song makes us so sad, because it reminds us of Jillian. . . . She died.”
“She did?” Emma said incredulously.
“Yeah.” Cadence lowered her gaze.
“How did she die?” Emma asked, watching Cadence carefully.
“She had cancer.”
“Oh, that’s sad. I’d be so sad, if you died, Cadence.”
“I won’t die because I don’t touch poison.” Cadence waved her finger through the air. “Are you sad about Jillian?”
“Did I meet her?” Emma seemed puzzled.
“When we get to heaven,” Cadence said, “I’ll introduce you to Jillian.” She smiled broadly.
“Oh, thank you, Cadence.”
They then returned to their previous activity of coloring. Although Cadence said she was sad, she’d never really appeared to be unhappy about her sister.
That changed one Saturday morning when Cadence and Tom discovered a DVD of Jillian in the player and he decided to let her watch it. With undivided attention, she looked on as Jillian plummeted from a healthy toddler into the grasp of cancer, undergoing chemotherapy and hair loss, stem cell transplants and radiation. Transfixed, she fell in love with her sister. “She’s funny,” Cadence giggled. Maybe she watched too much that day, but she seemed ready to understand more than ever before.
Later that afternoon, I found Cadence on her bed, quietly sobbing. “Are you okay?” I asked.
“I miss my sister!” she said. Then the floodgates burst open, and she wailed and wailed.
I put my arms around her. “Me, too, Pumpkin. Me, too.”
Part of me wanted to do something to ease her pain, but most of me knew she was going through something important. Still, I struggled with the urge to fix it for her. My mother’s words—”Don’t start”—came back to help me this time. Allowing myself to just hold her, I felt closer to her than ever, like the walls built by death were somehow collapsing and my heart expanding, allowing her to enter the space reserved only for Jillian. My eyes teared. She understood my sorrow. Maybe she was crying for all of us.
Tom joined us and we held each other as Cadence sobbed and sobbed. I’d never seen her cry this much; maybe I’d never let her before.
I thought of the times Tom and I had spent on this bed, holding each other and crying for hours in the months after Jillian died—crying until there were no more tears was one of the most healing things we did.
“Papa and I cried on this same bed when Jillian died,” I said to Cadence.
Her eyes held mine between sobs. I saw the recognition that I’d only seen in grieving parents’ eyes.
Cadence cried nonstop for more than half an hour. When she finally took a deep breath, I asked if she wanted to read some of Jillian’s favorite stories, and she did. The three of us snuggled in bed and read a pile of books: Tarzan, Quick Quack, Quick, Sammy Syringe, and others.
That night, Tom and I talked like we hadn’t in months. Cadence fell asleep with pictures of Jillian on her pillow.
These memories are frozen in time. I have so many, some healing like this, others devastating. As Cadence matures, she’ll understand her sister differently. Waves of sadness will come and go. The three of us will continue to wade through the grief, not as swiftly as I had imagined, but steadily.
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Sylvia Johnson, Ph.D., is a clinical psychologist practicing Imago Relationship Therapy in Tampa, Florida. She’s working on her first book, Jillian, a memoir of the extraordinary life of her first child. Contact: DrSyl2heal@aol.com.