I’m watching my 8-year-old son try to con a nurse out of $500 by selling her a hunk of plastic he’s labeled a “blood diamond” when a mom next to me in the hospital waiting room leans over to ask: “Is it the disease, you think?”
She’s referring to adrenoleukodystrophy, the terrifying brain-devouring disease that her son shares with mine. “Behavioral changes” are one of the tell-tale signs of its progression.
At this moment, though, I can safely say, “No, my son’s always been this way.”
Just moments earlier, a nurse who’d drawn his blood gave him a plastic coin with which to get himself a prize from a nearby toy machine. He pocketed the piece of plastic jewelry he’d won but returned to her looking downtrodden, whining, “The machine ate my coin and didn’t give me anything!”
“He’s trying to scam you, don’t fall for it!” I shouted from across the hall, my son unleashing a devilish grin as the nurse chuckled. The coin scam quickly turned into the “blood diamond” scam with the gemstone he’d acquired and the other unsuspecting nurse further down the hall.
“Well he definitely seems to be doing better!” she says.
The last time this particular nurse had seen him, he’d asked to be euthanized. He was in the throes of chemo-induced agony, when no variation of “this will be worth it in the end” could convince him that being brought to the brink of death really was his best chance at survival.
In less than three months, I’ve seen looks in his eyes that I’ll never shake. I’ve watched him throw up blood. I’ve scrubbed up his puke and diarrhea with industrial-grade antiseptics so many times my hands have peeled and bled. I’ve sat through the night at his bedside and watched his chest rise and fall, so afraid that it might stop.
Countless other moms of sick children have gone through exactly the same thing. It sounds dramatic, but it requires little to no thinking—it’s second nature, maybe even first. We call it motherhood, but I prefer to think it’s one of those things that’s too innate to have a name. Americans will celebrate that very unprofound national holiday in honor of this very profound thing this weekend, around the time my son and I find out if he has or has not been granted a reprieve from his childhood death sentence.
It will have special meaning for me.
In my case, it means watching my son turn around and smile at me and suddenly seeming, for one fleeting moment, to be cured of his deadly brain disease. And maybe he is. I feel a flush of warmth at the thought.
But then my legs give out and I crumple to the concrete floor like soggy cardboard and my son’s expression changes as we both understand how much my own degenerative disease has progressed while his was being treated.
That is what it means to be a mother. Dying in slow motion to save your child.
I was told initially I could probably avoid ending up in a wheelchair. Diagnosed two years before my son’s much scarier disease was detected, my autoimmune disease, multiple sclerosis, at first seemed like the biggest struggle our family would have to face.
“Avoid stress,” my neurologist had told me. “Stress is the one thing we know will speed up progression. Get good sleep, eat healthy, exercise as much as you can and make whatever lifestyle changes you need to in order to minimize stress.”
I did as I was told, but a stress-free life wasn’t in the cards. All that mattered in terms of my own illness when my son got sick was staving off progression long enough to ensure I could still be on my feet to tend to him as he underwent his bone marrow transplant.
“Just get him through it,” I told myself. “We can’t both be bedridden at the same time.”
I’m still not sure if it’s funny or tragic that my son and I both wound up with degenerative diseases. I prefer to think my son’s case is tragic, while mine is darkly humorous.
Like the time we were stuck in traffic, rushing to get him to a doctor’s appointment for a test that would tell us if he was dying or not. It was the perfect time for the bladder issues caused by the lesions in my spine to remind me why I should never be too far from a toilet.
I peed myself in the car.
“It’s me, not him. He’s fine,” I responded brusquely to the looks of concern and queries about the stench of urine when we finally got to the hospital. (Loss of bladder control also happens to be a worrying milestone in my son’s disease.)
As President Donald Trump flirts with the idea of “baby bonuses” to boost the birth rate, I wonder if he’s ever seen this side of parenting. If he’s ever wet himself to put his child first. But of course that would be too much of a downer for his $5,000 gimmick and the White House lie that he “wants America to be a country where all children can safely grow up and achieve the American dream.”
Not all children, let’s be honest. Not the ones with cruel diseases that are too rare to matter to his administration. But mothers don’t need a $5,000 cash incentive to fight for their kids. I’d gladly spend another 100 days scrubbing up my son’s bile and holding his hand when he hurts, even as I stifle my own cries of pain. I’d do it all again, and then a thousand times more, and I’d do it until I died and then keep doing it from beyond the grave if it meant saving him.
