It was one of the first things a doctor said to me, after the room stopped spinning and the words “He has cancer” had pinballed around us and finally come to rest at our feet. I get why they tell parents this. I do. A kid who survives cancer still has to live in the real world and not be a menace to society.
I suppose they meant, don’t let him by with murder just because he has cancer. Be a parent. Parent him, because he’ll probably get a shit ton of new toys and a Make-A-Wish, but he’ll also feel like crap most of the time and be on meds that mess with his mental state, and he needs a north star, an unmoving constant, and that constant is you.
After treatment ends, I have heard other parents say, their cancer survivor is an entitled asshole. Makes sense, because entitled asshole is something that is hypothetically reversible, unlike death. When a kid is constantly scrambling backward against the incessant forces flinging them into their own early mortality, eating their vegetables is pretty low on the priorities list.
But the truth is, I give my kid cancer passes. I constantly ask myself if he feels awful when he is having a meltdown, and if the answer is yes, I have infinitely more patience with that meltdown. What sort of person would I be if I didn’t?
My kid’s cancer has about a twenty percent chance of killing him. Odds of him having a future are greatly in his favor. Out of a hundred kids with his exact diagnosis and the slightly less than ideal response to chemo that reclassified him as high-risk, eighty of them will live. If he were to be one of the twenty, what would I regret?
I wouldn’t regret not buying him a toy he wanted. I’d regret not sitting down with him in the middle of the Target aisle, pulling him onto my lap, and talking about his feelings with him. I’d massively regret snapping at him, punishing him for so viscerally expressing himself. I’d regret losing my cool with him. I’d regret isolating him when he was losing control of his emotions. If I should physically hurt him, ever, my regret would be overwhelming. If he had ever seen me as threatening instead of a solid, immovable source of love and comfort, my regret would someday eat me alive. More than a future without him, more than any outcome of this fight, the thing I fear, the thing that stalks my dreams, that rattles the doors in my subconscious, is my fear of future regret.
This is the tightrope a cancer parent must walk. If their kid lives, they must prepare their kid for the future. There are suddenly necessary evils, the pressure to be less of a friend and more of a mentor. If they don’t live, the entire picture changes. To live means to delay gratification and plan for future benefit by limiting current happiness. If there is no future, it all becomes entirely about milking every drop of joy from this moment right now.
I am constantly holding simultaneous space for two outcomes; he will live, or he will die. Not today, but someday. Maybe before his childhood ends, maybe not. Every day, the polarity of those two outcomes clash discordantly inside my head.
If he lives, we need to work two jobs. We need money. We need to buckle down and provide for him, so he and his brother can go to college, so we can afford the cost of his increased medical needs in the future.
If he dies, all that matters is giving him the experience of true, wild, joyful childhood. If he dies, we cannot afford to spend our lives denying him time with the people he loves most while we spend all our time at work. If he dies, we need to sell our house and spend time in the beach town he talks about constantly so he can spend his time in sun and sand and water, sticking his snorkeled face under the surface of the ocean to delight in his current favorite things- coral reefs and angelfish and colorful sea life, and we need to occasionally return to our mountain town to give him his other favorite thing, snow under his little skis, which he controls determinedly in spite of his chemo-weakened legs shaking from exhaustion. We need to curate his friendships, shielding him from the bullies, from those who would see him as less because of his fragile immune system and the brownish circles beneath his eyes, because lessons learned the hard way about self-respect and the nature of humans, the way some humans express their pain and enjoy inflicting pain on others are lessons he won’t ever need to apply.
If he lives, we must begin to have difficult conversations with him. Less wildness, more concern for the well-being of others. If he lives, we should be teaching him the foundations upon which he will base a lifetime of critical thinking, as uncomfortable as it is. If he dies, belief in magic is perfectly acceptable. If he lives, he will need to know how many, many beliefs swirl around our human inability to accept our own mortality, how many religions have been built from this very question. If he dies, we can answer his questions about death in the most intricate and imaginative stories of unknowns, concocting beautiful tales of the adventures he will have as he waits for us to join him on the other side of that bridge he must cross, alone for the first time, running through spinning constellations and nebulous grandeur toward infinitely better things.
As I carry space inside myself, these two opposite outcomes swirling, circling each other in my mind, every decision I make informed by one of them, another thought interjects itself into the fray. A thought that rings true, and somehow comforts me. He will die. Maybe he will have a long, productive life first, maybe he won’t survive his childhood, maybe his last day will come in his twenties, or his forties, or beyond, and maybe cancer won’t be the reason. As certain as the fact of his birth, the swelling of my body and the pains I screamed through as I birthed him, as true as the warm solidity of his body nestled against mine, is his inevitable exit from life. He only gets one childhood, which will end regardless of how it is terminated.
Once it is gone, what will I regret most? Will I regret denying him adventures, wildness, the sheer joy of an unfettered childhood as we work several jobs to launch his adulthood, so he will not have to make these same agonizing decisions for his own children? Or will I regret denying him the opportunity to apply to any college, regardless of price, leaving him no springboard from which to launch into an adulthood not haunted by the constant spectre of poverty, as his parents’ has been?
The only person I can truly ask is my own lingering inner child, still challenging me on wakeful nights with whispered input from the blanket of adulthood into which I have tucked her. My parents worked incessantly, but it was never enough to give me all they dreamed of. My wildness was not shared with them. I wandered through the outdoors unmonitored, sticking my fingers into the mud, baking my tender face in the summer sun, making pets of barnyard animals, pulling thorns from my bare feet. The flashes of sunlight through my childhood memories are all made of the times they left work at work and took a rare vacation, unable to afford motels, camping, swimming in icy mountain lakes, willing their vehicles to not break down. Their joy largely ended as mine was just beginning. From the moment my birth nearly ended my mother’s existence as her life pooled, crimson, beneath her on the delivery room floor, rendering her sterile and myself an only child, my existence brightened theirs, but they did not truly experience my childhood with me.
We’ve been talking about quitting our jobs, liquidating our few assets, doing seasonal work in our mountain resort town, and traveling with our kids. There would be planetariums and fossil fields and coral reefs, sand and sky and trees older than our ancestors, microscopes and telescopes, but to show them these things, we would have to pull them out of one of the best public schools in the nation, with teachers who truly care and have the resources to spend on them. We would deny them a common rite of childhood. Yes, of course we could homeschool. Of course we could find other homeschooling families and give our kids a social experience rivaling that of public school. But this all means I would dedicate my time directly to them instead of to earning an income. We would do this hoping to eventually build up enough savings we could retire, putting off our feeble stab at accumulating enough savings to be self-sufficient in our sunset years until their childhood morphs into adulthood and they built their own lives apart from us.
Through cancer, our son has developed a true passion for learning. From being delighted by the phlebotomists pulling the blood from his body, deep red, dripping into vials, to watching those vials spin and separate his blood into layers in the centrifuge when a lab employee can be talked into bending the “employees only” rules, to spending time in his hospital bed experimenting with the laws of physics and building intricate structures with play-dough and legos, to his endless streams of questions leading us into obscure corners of the internet as we guide his search for answers, to his obsession with marine biology and planets and constellations, driven by primal longings he is constantly searching for worlds other than his own. If he dies, I will never regret seeing his face light up with the joy of new discovery. If he lives, I will never regret feeding his love of learning, either...but I feel pressure to somehow also prepare him for the mundanity of adulthood.
What happens when parents choose extraordinary adventures for their children, loathe to immerse them in the ordinary? Do those children grow up to be extraordinary individuals, refusing to settle for the ordinary and the mundane, or do they just grow up malcontent? Do they grow up resourceful, or do they resent the fact that their parents have no financial support to offer them as they are unable to pursue their extraordinary dreams, because college is expensive and starting business ventures is difficult without family assets?
Do we give ourselves a cancer pass, because we are all going to die?
Weeks will quickly turn into years as the hourglass of their childhood runs out. There is an expiration date on this decision.
