Why My Son Is Lucky Even as He Fights for His Life
“My dear, they are watching you,” said the petite Cambodian housekeeper, clutching my hands while I made my way down the hallway towards the hospital coffee machine. “You are not alone.” This was the first time I’d seen her uniform pulled up to reveal full-length tattoo sleeves on both arms. This was the first time she’d mentioned any “spirit guides” to me.
But then, this was the first time she’d seen our hospital room looking like a crime scene too. About two weeks after my son’s bone marrow transplant, the chemo port surgically implanted in his chest to feed a Machiavellian cocktail of toxic but life-saving drugs into his body had somehow popped out, unleashing a hose of blood from his superior vena cava before I could even register what was happening.
(Trust me when I say that you’ll probably need a strong cup of coffee after you ever feel your own kid’s blood spatter wildly on you like this. It’s the sort of moment that forces mental clarity, by way of complete mental collapse.)
All I knew at the time was that my 8-year-old kid was shrieking and squirting out a dark liquid that was not supposed to be there.
“I’m bleeding to death!” he yelled. “It’s blood, it’s blood, why is there blood?!”
It’s something we might laugh about some day, at some point, but not now, and not for a while. It was, after all, a lot of blood.
“You’re OK, you’re OK,” I repeated. “It’s just a vein, it’s not your heart, it’s not an artery.”
The panic only lasted a few minutes. A swarm of doctors and nurses swooped in, their arms already in motion to fetch gauze, apply pressure and sanitize seemingly before their eyes could even fully register the scene. My son, meanwhile, had passed out almost as soon as he was horizontal again, from shock and an emergency dose of steroids.
Apparently the spirits were there watching this, and they’d felt compelled to step in. At least according to the housekeeper-slash-shaman, who said they were of a very humble sort and didn’t want to be rude, or presumptuous, by foisting themselves upon me without consent.
“You must call out to them,” she said.
“Like how vampires have to be invited in?” I asked, sleep-deprived to the point of delusion.
“No, no, dear, they are not vampires. They want to help you get out of the darkness.”
I held her hands and thanked her for her stoic exposure to my son’s bodily fluids, muttering in passing that I “definitely” would listen for those spirits and take into consideration whatever it is they had to say.
“You know,” she said, “in my home country they’ve never heard of this disease… Boys who have it just die, there is no hope. So I think the spirits have always been near you.”
Surely the spirits could find a more worthy candidate, I thought? But then I often have trouble metabolizing good intentions these days, given the nightmare my son and I find ourselves in. Maybe the spirits weren’t at all drawn to sadness on the pediatric bone marrow transplant floor, but the putrid whiff of expelled bodily fluids. Mucus, which is violently purged from my son’s tiny stomach every two hours on the dot, as if afraid of a penalty for tardiness. Blood. Urine. A form of diarrhea that defies description.
My son is mostly confused when we’re cleared for discharge just a day later, a milestone that sounds important but, in terms of his disease, doesn’t really mean much. We walked out of the transplant unit to cheers and applause, waves and smiles that suggest a happy ending. But we don’t yet know if the transplant will save him, if it’s halted the progression of his brain-eating disease or just briefly given us that illusion. We’ve got about 70 days to go until we have an inkling.
But at least we’ve been given the chance. As scientists and researchers once again become the favorite bogeymen of the MAGA faithful, I realize that if we’d lived in almost any other country, my son’s rare disease almost certainly wouldn’t have been caught until it was far too late.
As he’s retching into a bucket, it seems wrong to tell him he’s lucky.
But I know mothers across the world who know it’s true. Mothers like the shaman mentioned. Whose sons have lost all ability to communicate. Who can’t walk or speak, see or hear, but can still feel pain. Whose only discernible sound is a whimper.
My son might very well end up in that hellish state too. But he has a fighting chance; even as we spend all day cleaning up mucus and blood, he’s lucky to at least have that chance. Thanks either to spirits or scientists.
I would like to think that one day he’ll know that.
