I Never Wanted You To Label My Late Child a ‘Hero’

OLYMPUS DIGITAL CAMERAWe know that kids with cancer are heroes, right? The Leukemia and Lymphoma Society organizes an annual prom for its “little heroes” and a St. Jude affiliate clinic features a “wall of heroes,” depicting young cancer patients. And cancer parents’ CaringBridge sites routinely mention their child’s heroism.

But does a cancer diagnosis confer hero status? Not if you consider that cancer doesn’t discriminate on the basis of niceness. If it strikes children like my own 12-year-old, it has also seized the lives of the despot Ayatollah Ruhollah Khomeini, the “night stalker” Richard Ramirez and the controversial president of Venezuela, Hugo Chavez.

My daughter is my hero. The sicker she became the more gratitude she expressed to her family, the more empathy she demonstrated for those with vulnerabilities and the more generous she became with her possessions, her hugs, her ability to let go and forgive (something that her mother still struggles with).

But I remain guarded about the reckless use of the ”h” word when it comes to cancer. Natasha was kind, compassionate and gracious, and over time she did not bear her disease with astonishing bravery. To those she felt safe with, she riled against the hospital visits, the treatments, and the disease that plundered her energy and her once shining plentiful hair, dulled her quick wit and stunted the smooth strides that effortlessly completed 5K runs.

Natasha

After enduring cancer treatment, the aftermath of treatment to be followed by a plethora of more treatments, my daughter’s capacity for pain had dwindled. She cried in anticipation of blood draws, she grimaced when I brushed her hair – however gently – and spoke of an all-pervasive pain. She was a child that had had it with cancer. To those she loved and trusted, she didn’t soldier on with a smile on her face as the hero-philes would have it. She mourned the injustice of the good health that she had irrevocably lost, noting that her friends who had morphed into gangly preteens got to play a brisk game of basketball.

I’m reading John Green’s “The Fault in Our Stars,” the bestselling novel about two smart-talking teens with cancer, which has been made into a highly acclaimed movie. In it, Augustus, the boyfriend of the narrator, describes his late girlfriend who died from a brain tumor. Was Caroline a hero? Not according to Augustus. “Cancer kids are not statistically more likely to be awesome or compassionate or perseverant or whatever. Caroline was always moody and miserable, but I liked it. I liked feeling as if she had chosen me as the only person in the word not to hate … She was not, you know, the paragon of stoic cancer-kid heroism,” he says.
Yet when Caroline died, thousands wrote online tributes describing her “heroic fight,” how much she would be missed and that she would live forever in their memories.

Perhaps this is what is wrong about labeling kids with cancer as heroes. Not only is it an awful lot to live up to for those in fragile health, who might rightly resent their decline, but it gives those of us who don’t know how to interact with them a free pass to keep them at a distance. Pronouncing them a hero puts them up perilously high on a pedestal, where we can view them silently in awe, too far away to see the pain, loneliness and frustration reflected in their eyes. Children with cancer don’t need our hero-worshipping, our proclamations that they are “so brave,” “such a trouper;” that they “never complain” and are “so inspiring.” They need us to stick around and accept them – cancer and all.

momngirls

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