My Son Is Dying and I’ve Suddenly Become a Really Good Liar

You need a really good poker face when your child is terminally ill. The kind even heavy-duty sedatives can’t buy. The kind that can withstand grenades like, “What do you think I’ll look like when I’m 16?”

“We don’t know if you’ll reach 16” is not a response any parent can give.

So I ignore the risky bone marrow transplant just weeks away, the odds that it might not be successful, the reality of an 8-year-old afflicted by a deadly brain disease, and chirp in my most nonchalant and upbeat voice: “Handsome!”

It’s not technically a lie, and of all the mistruths I’ve told my son, it’s not the one that keeps me awake at night. Nor are the other, more outrageous lies I’ve told him over the years. Most of them have backfired spectacularly, though harmlessly, and I always assumed we’d have a good laugh about them when he became a successful but modestly dressed game designer someday visiting home with his new family.

I’d regale them with the story about how, when he was 3 years old, I warned him not to repeat any swear words he’d heard from older kids, because doing so would summon a “big scary wolf” that attacks the foul-mouthed.

I’d be forced to reveal my own clumsiness as a mother when I got to the punchline—the fact that less than three days later, I’d reflexively cursed under my breath in traffic, and my poor terrified preschooler began screaming from the backseat that we had to take cover from the “big scary wolf.”

Then there was Dino, the well-intentioned demon who lived in our toilet, according to a Ouija Board I used to outsource some basic parenting when my mere mortal self didn’t seem sufficient. “See? Even ghosts and demons want you to stop leaving half-eaten lollipops lying around,” I’d explained.

Dino was a wonderful parenting tool—until my kind son began to get self-conscious about pooping onto a demon’s head. He’d very considerately squat three to four feet above the toilet bowl to give the demon a chance to dodge his mini torpedoes, and cause a toilet water tsunami in the process.

“You don’t have to keep pooping like that—Dino really doesn’t mind,” I said, trying unconvincingly to undo my own mistake.

It was after my son was diagnosed with the notoriously deadly disease cerebral adrenoleukodystrophy that I told him the biggest whopper of all—that he’d have to fight. That he would die if he doesn’t, and that he may just as likely die even if he does. Both of those things are true, but it’s not fighting that is required of him.

We use that word to describe terminal illness because it gives us the illusion that we have some control. We cheer on those “fighting” cancer or muscular dystrophy or ALS or any number of other ghastly diseases that casually but deftly squeeze out and then stomp on what makes us human.

Because if it isn’t a fight, then what’s all the suffering for? The truth is too hard to swallow.

There is no fight. A child undergoing the horrors of chemotherapy and a bone marrow transplant doesn’t get to throw any punches or hit back. My son won’t get to stand up to his opponent. He will lie there and withstand indescribable suffering; he will watch his hair fall out, feel the pain of sores erupting throughout his throat and esophagus, the confusion of not being able to control his own bowels and being fed through a tube.

That is the “fight” I find myself warning him about. I use that word even though I know it’s a lie. Because my vocal cords cannot, will not, tell the truth.

So I give him the version that’s been sterilized beyond measure by all the humans before us just doing their damndest to prevent a broken heart.

“You’re going to have to fight,” I say, just after doctors tell us a transplant is our only hope “unless we’d rather focus on palliative care.”

He did that thing he always does when he’s scared and upset but doesn’t want to show it, tilting his face upward ever so slightly to stop the growing well of tears from spilling out—biting his lip and looking almost imperceptibly annoyed that I can see his vulnerability.

“It’s not fair, and no child should ever have to go through this, but if you want to live, you’re going to have to fight,” I repeat.

“Okay,” he says, too shocked or confused to offer anything more.

As things get more real and a tentative transplant date is set and Make-a-Wish starts calling and asking what this 8-year-old boy would want more than anything else in the world, I cannot help but choke on the question.

To live. He wants more than anything else to live.

So we go on long night drives, trips that my son believes are adventure-seeking and spontaneous, but in reality are carefully calculated exorcisms of grief. Because when he sits in the backseat and I adjust the rearview mirror just right, he can’t see the tears streaming down my face.

I turn on ABBA’s “Gimme! Gimme! Gimme!”—an accidental inside joke of ours—and let him roll down his window and yell into the freezing night air and feel emboldened by this act of rebellion while my shoulders heave and fall in front of him. He thinks I’m dancing but I’m not.

I cannot tell him he will suffer, but he knows. He hears the strained cheer in his teacher’s voice as she asks to organize a virtual goodbye—no, a good luck—party for him to see all his classmates before he “goes away for a while.” Before he spends the rest of third grade confined to a hospital bed in a city he’s never seen for a procedure that will either save him or kill him faster but will absolutely, without a doubt, be torturous.

“What will you wear for the party?” I ask the night before.

“Can we dye my hair green?”

And so we do, in between his demands that “no actual learning” take place. Rather, it should be fun, like a birthday party at the wrong time of year, a chance to brag to friends that he gets to “skip school” and stay home and wear no pants.

“Do you think they’ll ask why I’m not coming back to school?” he asks.

“They might.”

“What should I tell them?”

“You can tell them whatever you want, or tell them nothing at all if you feel like it.”

He stares at the floor for an excruciating 30 seconds. And then suddenly he is a 3-year-old again, asking to watch videos on my phone of the “good old days” and curious what I’ve done with his old toys—plushies and building blocks and pretend cooking utensils and rubber dinosaurs long ago abandoned when he turned up his nose at those silly things “for babies.”

“They’re still here, just in the toy chest,” I say. And he beckons me to take them out, to set them up so that he might play with them again.

Unspoken between us is the why. But it’s understood.

“You miss being 3 years old?” I ask.

“Yeah,” he says.

“Why?”

“I just had more time then.”