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My three-year-old's short life was a hero’s journey Add to ...

When my three-year-old son died of brain cancer, one of my first thoughts was that maybe it was my fault: I didn’t try hard enough.

Our media and our culture have led us to believe that if you try hard enough, you can beat cancer. Lance Armstrong was once considered a hero not just because he beat all the other cyclists, but also because he beat cancer.

We don’t talk in a similar vein about beating a broken leg or beating multiple sclerosis. But with cancer, our society positions it as though the patients wage a war that they can win if they are determined enough.

Then, at the least, they are known as survivors – perhaps in reference to the reality show where contestants must “outwit, outplay and outlast” their competitors in the wilderness. At the best, they are known as heroes.

But what happens if you’re not a “survivor”? Are you a failure? Or are you just dead?

My husband and I felt complete after having our daughter, Kalpana. However, not wanting her to be an only child, we had another baby, Rahul. I felt almost sorry for him during the pregnancy, because we were having him as an add-on.

But from the moment he entered our lives, Rahul commanded our attention. He smiled in his second week, and was laughing uproariously by his second month.

When he was 1, he went up to a woman whose face had been disfigured in an accident, looked her in the eyes and played with her. She was thrilled, and thereafter would always ask, “How is my hero?”

At 2, he was doing jigsaw puzzles with a focused frown on his face. Having figured out his sister’s absent-minded tendencies, he would find her shoes in the morning and hand her her schoolbag.

He knew his alphabet and looked for things to laugh at. Once, when a friend with a lilting Irish accent said to him “Good-bye-ee,” Rahul replied “Good-bye F” and broke up giggling. It took the friend and I some time to figure out what was so funny.

When asked how old he was, Rahul would often say “5” and smile shyly.

In many ways, he was older and wiser than his years, but he never made it to 5. Toward the end of his third year, he was looking skinny and tired. Shortly after his third birthday, we noticed his eyes were crossing. What the doctors told us brought our idyllic world to a grinding halt: He had in inoperable tumour in his brain stem, and six months to live.

Treatment began with six weeks of radiation, every day of which required general anesthesia as Rahul was too young to stay still. Next came chemotherapy, pills hidden inside his favourite strawberry ice cream. Then we roamed the world looking for alternative therapies.

After four months, he was no longer able to walk. After five months, his speech slowed down. His last words to me were prophetic. One day, as I was changing his clothes, he put his hands on either side of my face, looked me deep in the eyes, and said softly: “I’m all done, Amma.”

Even after he lost speech, he would from time to time put his hands on either side of my face and look deep into my eyes, as if trying to give me strength for the years ahead.

Surviving cancer isn’t really a matter of guts and glory, but of what type of cancer it is, where it is, how far advanced and how aggressive it is – all rather practical stuff. We cling to the image of bravely fighting off cancer because it makes us feel like we’re in control of the situation. We further solidify this image by seeking to idolize those who have “won the battle.”

Maybe we need to look for our heroes lower down in the stratosphere. Not all of life is a competition, and heroes are not just those who win.

Rahul had an immense ability to withstand the pain of his headaches. He would sometimes cry out at night, but during the day he would simply climb onto the sofa, sit quietly until the pain subsided, and then resume playing. Even during the last days of Rahul’s life, the palliative-care doctor only knew when to administer the morphine by noting that his blood pressure and pulse were rising.

There are heroes who try, fail and don’t live to die another day. And there are heroes who try, fail, watch their loved one die and have no choice but to go on living.

Maybe heroes are inside each of us and come out only when forced to – not to be put on a global stage, but to be present in our private lives; not to be publicly celebrated for having won the fight, but to be silently respected for having fought a good fight.

Perhaps we could form an organization and call it “Live Stronger – Die Stronger.” There may be a problem of dwindling existing members, but there would unfortunately always be new members. We could call them “the Path Walkers,” a term focused not on the destination but on the shared journey.

Baseball player Lefty Gomez very wisely said, “I’d rather be lucky than good.” We were not lucky. However, I was in a room full of heroes the day Rahul died. Parents, grandparents, sister, cousin, aunts stood around him, our hands touching him, our hearts breaking, and watched our little hero go. Later, as we stepped out of the Alberta Children’s Hospital into the winter evening, I don’t know who had survived.


Ranjani Iyer Mohanty lives in New Delhi.

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