Opinion: What Not to Say to Me When My Son Is Fighting for His Life

Aedrik Quinn
Photo Illustration by Victoria Sunday/The Daily Beast/Allison Quinn

A funny thing that people do when you tell them a sad story is offer a consolation prize.

There’s a special one for mothers mired in misfortune: You win the honor of being called “strong.” Even though you never wanted to be and it’s not an honor.

That’s it. That’s all you get. The label. And if you could see it and wear it, it’d look just as tacky as those satin sashes at beauty pageants and it’d be scrawled out in hideous Comic Sans font.

A friend of mine who is now dead once joked that telling someone they are “strong” in the face of tragedy is just another way to say, “If I were you I’d probably have offed myself by now.”

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I am guilty of this offense myself, a hundred times over. I have to keep reminding myself not to fall into this habit with my son as his tiny body is battered by round after round of chemo. In a bid to save his life from a rare genetic disease determined to render him a vegetable, doctors must brutalize his insides. And only then rebuild.

I’m by and large a stone-cold pessimist, but even I failed to foresee what that would look like. I definitely thought there’d be more time before they pulled out the morphine. An hour and a half in, my son had curled up into the fetal position and began howling, clutching his eyes, and begging me to kill him.

You’d think I would crumple at the sheer sight of it, but the proximity of death and all its somber preludes has a way of suspending breakdown, granting a temporary stay. You hold your breath, even if it means asphyxiating for months. Emotions are filed away in a back drawer. Tears too.

So I stare and wait, then try to hold his hand. But he orders me not to touch him. He doesn’t want comfort or consolation, he wants to make a run for it.

“Stop the chemo,” he moans. “I don’t consent. You need consent!”

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It seems like the wrong time to explain his lack of legal rights, but I tell him in so many words that the chemo is meant to save him, not hurt him. That he needs it. That it’ll be worse without it. That he’ll lose his vision and capacity for thought, probably also his hearing, and be left to experience the world in darkness and confusion and the cold touch of his hands feeling the walls. And then a short time later his legs won’t work and he’ll just be flesh, a body with no brain, braindead, no more boy inside.

“That’s why we’re doing this.”

He doesn’t understand. I have to restrain myself from showing him a picture of another little boy, a boy in another country with the same disease who wasn’t so lucky. A boy who’s not much more than a bed linen now.

“I can’t, I can’t…“ he says, half with his eyes and half with his mouth.

He doesn’t have a choice. Free will has left the chat. Or was never invited to begin with. That’s just how rare genetic mutations like adrenoleukodystrophy (ALD) work when they hand down a death sentence. Yes, you can refuse, you can go back to normal life, but within a few months there will no longer be a “you.” So your will is moot.

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I have never seen this illustrated so clearly as it is now, in the pediatric bone marrow transplant ward of a Minneapolis hospital. I hear children emitting varying notes of distress as I walk to the bathroom. Mild whimpering, barely audible. Full-blown howling, piercing, staggering. It’s strange because I don’t know who they are, what gender or what age, and I’ve never seen their faces.

Though the transplant floor is full, each patient and his or her family is left to orbit in their own private universe, sealed off from everyone else, living in boxes with walls made of muffled cries and hand sanitizer dispensers.

They used to give cyanide pills to spies should it all become too much, but they don’t give anything to parents who face the prospect of watching their children die. At least nothing permanent.

We did, however, get a chaplain.

“If you have any spiritual needs, I’m here,” he says from the doorway.

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“Do you have a rage room?” I say. But only in my head. He leaves after I mutter a deflated “thank you.”

I ask my son if he has anything to say to God, any one of them, but he’s not interested. He says he just wants the world to end.

“What world?”

“The one where I’m here now.”

“There’d be no one to feed the pigeons.”

“They’d be gone too.”

“And the sun? The trees? Wouldn’t they be lonely?”

“No, them too.”

“Where would everything go?”

“To sleep.”

He twists and cries and hides his face. This was only the first day; he has days upon days of chemo left to go.

“You’ll be okay, you’re so strong,” I say, as if it actually means something. As if there’s a place somewhere where the word can be exchanged for goods, or gold, or rare gems of equal value. But it buys you nothing, not even time.