She arrived on a wintry Saturday morning, her water broken and the first contraction pains just beginning to mount. Due to circumstance it would be many hours before we met: by then she would be in fulminant labor, our opportunity to establish rapport now limited by time, discomfort, her broken English and my total lack of Mandarin.
As is my custom when meeting new patients, I asked for questions, concerns and hopes. This couple met my inquiry with the familiar wide-eyed stare of first time parents-to-be. But their answer was as earnest as it was unique: could I please deliver their baby before midnight? For then it could be born under the Sign of the Monkey, whose long and apparently lucky celestial reign would come to an end in a few short hours.
Whether through divine or medical intervention, she went on to deliver at 11:53pm. With the help of Google translate - and in our broken but best Mandarin - the nurses and I wished them a Happy New Year as their lucky little girl made her entrance.
But as I handed them their tiny screaming pink reveler, I couldn’t help but think about how ready I was for the reign of our monkey to end.
CJ is part of the There's a Monkey In My Chair program, designed to help connect kids with cancer to their classmates despite frequent and often prolonged absences.
He arrived at our home the summer before Kindergarten, complete with his very own backpack and school supplies. Callen wasted no time in naming him CJ – short for Callen Joseph – so that no one would forget who he stood for.
Six weeks after kindergarten began I was invited to formally introduce CJ to Callen’s classmates. Armed with the program’s book, one of Callen’s port access kits, and my requisite stash of tissues, I took a seat in the rocking chair at the front of the class. The children gathered round and listened as I read cutesy rhyming story lines that belied the painful reality of their message:
“Some days I may not Feel well enough
To be at school,
So I will send my monkey.
I hope that’s cool.” …
“Sometimes I may take medicine
That makes me look a little different.
Just remember that
No mater what you see,
I’m still ME”. …
“When you go to
Music, art or P.E.,
Since I can’t be with you
Please take my monkey
Just like it’s ME!” …
“I’m not sure how long I’ll be out
A week, a month, maybe just a day or two
But just remember
I’d rather be here in school with you
When you come in to the classFeyerham, H. (2011) There’s a Monkey In My Chair. Cincinnati, OH: The Cure Starts Now Foundation
And you don’t see me there,
Just look for that
Soft, furry, smiling
Monkey in my chair.”
When story time was over – and as I’d seen done to Callen hundreds of times before - I applied a mask to CJ’s face; gently washed his furry chest with an antibacterial soap-laden sponge stick; felt for his port and stabilized it with my left hand while inserting the spring-loaded needle into his chest with my right; secured a dressing to his fur; taped down the excess tubing; cleaned the hub, and made a show of injecting sterile saline into the line.
Monkey see, monkey do, right?
Except that unlike Callen, this monkey didn’t wring his clammy hands in anxious anticipation of what was about to be done to him. And CJ didn’t ask repeatedly for reassurance that he was “sitting perfectly, right, Mom?!?!" so that the clinician would be less likely to miss his port, resulting in a hollow ¾ inch long 22-gauge needle piercing his tender unanesthesized skin. Nor did CJ’s eyes drill through me demanding to know, “Is it going to hurt this time, Mom?”, because CJ couldn’t know the excruciating pain of a missed stick - or the subsequent agony when pulling back on the syringe would suck sensitive subcutaneous tissues up into its lumen. CJ didn’t recoil when the cold soap first touched his fur; he neither held himself rigid nor pushed himself into the back of the chair to relieve the pressure being put on the thin, taut and perpetually bruised-with-overuse skin covering his port. And during the interminable scrubbing required to sterilize that delicate flesh, CJ didn’t once scrunch his eyes, wrinkle up his nose, or crane his neck toward the ceiling in an effort to keep the noxious soap fumes from permeating his sensitive mucous membranes.
No, this demonstration was as kid-friendly a version of Callen’s reality as the storybook prose had been: nothing about CJ’s still, smiling and silent acceptance of the acts perpetrated against him could have been further from Callen’s truth.
Nothing, that is, except for Callen’s reaction to seeing it.
In a moment of totally uncharacteristic and unabashed disclosure, Callen shot up onto his knees; thrust his chest forward; lifted up his shirt, flung his arms back, and boldly exposed the tubing that similarly snaked its way out from his body. Obvious differences notwithstanding, with their swollen bellies and adorned chests, it was the first time in seven months that Callen had been in a room with someone whose battle-weary body looked even a little bit like his. And to this date - because of his ongoing infection with the parvo virus and the need to isolate him from all the other vulnerable children in his clinic - it remains the last.
But as quickly as he lay himself bare he covered up again, for little hands wasted no time in reaching for the curiosity dangling before them. He retreated back to a seated “crisscross applesauce” position, head bowed and eyes cast downward, those implausibly long eyelashes grazing his now-flushed cheeks.
In the barrage of questions that followed, the children touched on everything from Callen’s treatment to their own Grandma’s cancer to Sponge Bob’s misadventures to nightmares about things in their basement, and back again. They held their own show and tell of Ninja turtle socks, scrapes and bruises, character BAND-AIDs™ and pretty new barrettes. Finally - with stories heard and stories told - it was time for me to remove CJ’s line, take my leave, and put those tissues to use.
Nearly eighteen months and two full academic years have passed since CJ’s matriculation. Students and teachers alike - even the school principal - have faithfully and lovingly seen to it that where Callen can’t be, CJ is; and what Callen can’t do, CJ does. CJ has occupied Callen’s seat in the classroom, lunchroom and on the playground. He has been on field trips and in Halloween parades. He’s been dressed up, played with, read to, and loved on. He’s been spotted everywhere and with everyone around campus. This year he’ll even be in the yearbook, the Fall individual and Spring class picture having both been taken when Callen wasn’t there.
CJ has come to embody far more than Callen Joseph. We’re so far past remembering “who he stands for”, and too deep into the “what”. For me, he has become synonymous with loss: every opportunity and occasion marked by CJ’s presence – no matter how ordinary - is one more lost on Callen. Every shared picture of CJ holding Callen’s space smacks of "gone, but not forgotten”. Every image of CJ being where Callen wants to be, and doing what Callen wants to do, brings to mind the words of a grieving friend as she marks the endless passage of time without her own son: “You should be here ”. And on Callen’s sickest and scariest of days - which even now are all too often - the idea of anyone or anything ever filling the void left by a child - even for a moment - is simply unfathomable.
Today, as I’ve done countless times before, I delivered Callen to school many hours after the morning bell had rung. It’s been an unusually difficult week for him; his 33rd round of spinal chemo, 39th week-long steroid burst, and adjusted doses of 6-mercaptopurine, vincristine and methotrexate all coalescing into the perfect storm of physical and emotional chaos. He has managed fewer than eight collective hours of attendance in the past five days, with nearly a third of those spent in the nurse’s office recovering from his attempts to simply be present.
When we arrived at his classroom, Callen first peered through the glass window pane, then gently tapped on it to be let in. The door had barely begun to open when Callen quietly slipped inside.
But not before I spotted that soft, furry, smiling monkey sitting in his chair.