how little i know

The last installment in Jodi’s series:

There are many ways to know something, depending on how loose one’s definition of “knowing” is. My mom, for example, had a feeling that I was gay, but she had no way of proving it without my confirmation. Scientists require empirical evidence or proof that something is so. To the pediatrician who finally took the time to examine Caemon, feel his enlarged liver and spleen and order a CBC, this chain of evidence gathering lead to the moment when her hypothesis was confirmed by a pediatric oncology fellow. Our son’s leukemia was no mistake. It was a reality, the “new normal.”

I knew Caemon was very sick, but I knew absolutely nothing about leukemia. I had no idea what it was, so when I walked off the elevator at the hospital for the first time and saw the “Pediatric Oncology and Bone Marrow Transplant Unit” sign, I was viscerally rocked. I did not yet know what leukemia would do to my son, but I knew cancer. My mother had died of cancer; both of my grandparents had been diagnosed with terminal cancer. I was intimately familiar with cancer and its cruelty. But its casualties were old, and in the case with my mother, she smoked heavily for many decades. She courted cancer; what had Caemon done? Two of the most difficult words to see next to each other are child and cancer; it’s sheer terror when referring to one’s own child. It’s unimaginable, incredibly surreal, and hands-down the last place in the world any parent wants to see their children.

We were torpedoed down a rabbit hole of treatments and procedures, relinquishing all control of our son to strangers who were the only ones who might save him, and I, for one, knew that they would. My knowing was such: it didn’t matter how severe his disease was because he would survive it. The Marston-Simmons family was strong enough, had enough love and fortitude to withstand anything, and we had the best medical care we could hope for. Team Caemon was strictly A-list—true believers only—and anyone who wasn’t on board with that could stay away (and some did).

When I spoke to his oncologist on the phone after his death, she asked me somewhat incredulously “Didn’t you know that last week that he was dying?” She was speaking as a scientist and doctor, and from that vantage point, when looking at his non-existent platelets and his white counts, and his x-rays, she knew he was dying, but me?

“No, I’m just a mother who was trying to save her boy,” I replied. Truthfully, I don’t know what it looks like when someone is dying, and yes, I had heard her say that he would likely die, but I also heard her say that they had a few cards left to play, and so I clung to those words, trusted in the “plan,” and dug in.

In retrospect, my “knowing” was based not on mother’s intuition or empirical data (we avoided all studies and statistics on JMML), but on something more like desperation or self-preservation; nevertheless it was as potent as any certainty belonging to those devout believers of the divine. I didn’t believe in miracles, but Caemon would prove to be the exception; he would amaze people and recover. That’s what I “knew” all the way up until the moment he died. You can imagine, then, that the ensuing shock and disbelief I felt resembled a religious zealot waking up the morning after the supposed rapture realizing he’s been wrong and that his whole philosophy/belief/dogma/whatever is completely bankrupt.

In that absence of certainty that I now find myself, I realize how little I actually know. I have spent years in academia, trading in facts and evidence, but they bear little use in my current life. The fact is that Caemon is dead, and nothing that I did or did not know, believe or not believe, trust or not, makes any difference, at least not in the outcome. As many have reminded me, however, it did make all the difference when I walked into my son’s hospital room. I may never know why he had to be taken so young or how Timaree and I will endure without him–only that we must.

And so the journey continues.