Though published in May, 2016, I recently came across New York Times Magazine’s When Do You Give Up on Treating a Child With Cancer?
The story shared is both gut-wrenching, thoughtful and revealing. Parents of a young child try to navigate their close family through what they believe to be the certain, painful death of their son. Through their eventual acceptance of his death they enter into an extremely vulnerable state as they believe it is only a matter of days and weeks before their son succumbs to cancer. They try, against the wants of many, to give him at the end of his life as normal of a childhood he can possibly have at the increased expense of their own emotional stability.
However, miraculously, the child lives on. In a painful twist, the parents forfeit their meticulously planned course and conversations with their children and grapple with living with the fear that their child may yet one day, perhaps soon, go back down the path they had barely begun to have made some semblance of peace with. What’s more painful is that one parent, the mother, is not ready to leave her melancholy – A journey and state she is terrified of and does not believe she would be able to take again.
Would she be a bad parent to have her other children believe that their brother will live, to make plans for them in the future, to begin saving for college, only for him to later die? Many said she was irresponsible for taking him out of the hospital to live the rest of his live, when he was believed terminal, with his family playing in the grass and in the pool and others. She’s not sure.
“When you have a child with a life-threatening illness, you have an irrevocably altered existence,” Barbara Sourkes had told the Levys, and Esther feels that is true. She had always felt in control of her fate, but now she believes this to be a fiction. She finds it difficult to reconcile bitterness over the blight of Andrew’s illness with gratitude for the reprieve. “We are the luckiest of the unluckiest people in the world,” she says. “I truly believe that.” The story presents itself to her as a riddle that cannot be resolved. She recalls her anger when others told them to hope. Is the lesson that their friends were right and there is always hope? Yet it was only by letting go of hope and accepting Andrew’s death that he lived.
It becomes clear that even when a disease appears to be gone, its fingerprints, both seen and unseen, remain forever on those who were their hosts and of those who cared for them.