It started with a piece of toast. Or, more accurately, half of a piece of toast. The half with the jelly on it – the jelly that he asked for , mind you.
After toasting the bread “crunchy with butter”, as per his specifications, Callen asked about jelly. Did we have any? What kind?
I checked and double checked: was he really sure about the jelly? Jelly is, quite literally, not “his jam”. Yes, there’s an occasional request for a dusting of cinnamon and sugar, or a slight variation in the desired degree of crunchiness or amount of butter, but never ever jelly. He eschews anything that even remotely resembles a sandwich - and this would be one swipe of nut butter away from that.
But he was insistent.
The options were reviewed; he settled on grape (as if there’s any other kind when you’re six!). I turned the squeezable bottle end-over and, much to Callen’s delight, the container made a farting noise just before the jelly plopped onto his perfectly toasted and buttered bread.
He ate the plain half first. And while he did, my mind wandered to a beautiful place where lunchtime was infinitely easier because he now ate sandwiches.
He moved on to the jellied half. Bite. Chew. Swallow. Reject.
“Too much jelly!”, he exclaimed.
I took the knife and scraped off the jelly, then blotted the bread in a vain effort to remove any vestige of grape. But the color tinge remained. The fruity scent lingered. And more stubborn than that stinky purple stain on white bread was Callen’s insistence that he would not eat it.
Food fights are nothing new. In the past 761 days Callen has run the gamut from anorexia; to being unable to eat despite wanting to; to rejecting once-beloved dishes because they suddenly taste metallic and sandpapery and God-only-knows-how-else- awful; to eating food laced with drugs; to insatiable steroid-induced food orgies. He has “enjoyed” many-a-meal twice, unable to keep food down long enough to digest it. He is held hours on end without food in anticipation of procedures, and his daily maintenance chemotherapies are inexorably tied to his eating.
Cancer, chemo and steroids (which he wasn’t even taking that particular day) notwithstanding, there could have been something very normal – if not amusing -about that moment. About a six-year-old refusing to eat. About exerting will, exercising choice and having control. But normal is defined by context. And so there was nothing normal about this situation. And it was far from amusing. Because moments after pushing back his plate, he completely withdrew - physically, from the table in front of him, and metaphysically from everyone and everything in his midst.
He retreated to the sofa, enshrouded himself in blankets, and began to cry. It was a cry unlike any I’d heard before – soft and whimpering; in fact, I thought he was faking. And so, after some minutes had passed, I peeked under the blanket half expecting those bright blue eyes to be gleaming back at me with mischief.
But they were heavy with tears. And the couch was wet under his cheeks. And as his gaze bore thru me, his cries grew louder and more desperate until they overtook his entire body.
His sobbing reached a fevered pitch. I knew better than to engage just yet. But not so much Olivia. With innocence, courage and just a touch of her trademark beyond-her-years humor, she approached him. “Well, look who’s having a terrible horrible no good very bad day!”, she quipped, quoting a favorite book passage. He quickly and harshly rebuked her. Eyes wide and now heavy with tears of her own, she retreated wounded and worried.
I ordered him to his room: if I could neither control nor console him, then at the very least I would try to shield Olivia. But when he arrived upstairs, we heard above us the “thud” of his body being thrown on the floor, followed by fists pounding and legs kicking. His cries turned to screams - screams that were eerie and haunting and feral. Screams that emanated from his core and tore into mine. Screams that turned from anger to anguish. Terror. Fury. Exhaustion. He took the occasional break to breathe. Cough. Wretch. Gag. Vomit. Only to began again.
And through it all, this precious child –my sweet little boy who came into this world with a belly laugh nothing short of infectious…who perpetually raises the spirits of every one around him…who has been grace and dignity every day of this damned disease…who - despite two years of what should be learned experience - still greets each day with eternal optimism and still is genuinely surprised when it eventually turns to shit…would not look at me. Speak to me. Allow me to comfort him physically. He swung at things I could not see and yelled things I could not understand. He smashed and stomped and thrashed and flailed, wrestling with demons I could only imagine.
For two unbearable hours it continued. And despite my best efforts, I could not make it stop. I could not make any of it stop. Not what was happening to him, and not his reaction to it. After two years of taking it – of being repeatedly jabbed in the chest, stuck in the spine and limited by the measure of an IV tube; of being held down by the hands of trusted adults and held back from being a carefree kid; of missing school days and holidays and ordinary days of being four, five and six; of mornings spent puking and evenings just being utterly spent; of late night trips to the ER and long stays in the hospital; of swallowing bitter poisons and inhaling acrid vapors; of enduring every unimaginable type of pain; of “no you may nots” and “yes you have tos” and “because it’s what you have to do to get betters”, Callen was fighting back with everything he had.
And then - as precipitously as he had been overtaken - he stopped. Save the random post-meltdown shudder of breath that escaped him, he lay on the floor, prostrate. Motionless. Completely spent. Eyes puffy, red, still heavy with tears and staring widely into some place beyond where we were, he whispered to me that he had something to say.
I sat down on the edge of his bed, and waited – hoped – for him to join me. He pulled himself to his feet, then slowly onto the mattress. He looked smaller than he had just hours before, the brokenness of his body and spirit so painfully obvious. He stuttered with sobs and managed - weakly - “Mom … I want … to … do… a … puzzle.”
Order in the chaos. A puzzle it would be. And so he rejoined us. Quietly. Contritely. He sat next to Olivia and began to methodically pop pieces into place. Ever so slowly his voice took on a familiar tone and volume. Their easy, silly sibling repartee resumed. I took a step away from the puzzle table and into the kitchen to collect myself, allowing my own tears a private space in which to fall.
But no sooner had I begun to crumble, then he called to me again.
“Mom?”
I slowed my breath to even before answering, hoping to disguise any trace of distress in my voice. “Yes, Callen? What is it?”
Calmly, deliberately, and with almost a hint of relief, he spoke.
“Mom,” he sighed, “I don’t want to live anymore.”
I froze, absolutely stunned. A prickly panicky heat spread like wildfire throughout my body. My heart plunged into the pit of my stomach, displacing every bit of air from my body. And all I could muster in that moment - as if I’d just been asked where babies came from or how exactly Santa fits down the chimney – was a knee-jerk, “We’ll talk about it later.”
It has been an emotionally charged 13 days since Callen’s declaration, and while his words have been on almost constant replay in my brain, we have not yet talked about “it”. But we have to. Because there have been daily reiterations of this same theme. Of wishing his days were not spent in treatment. Of wishing he didn’t have to feel this way. Be this way. Live this way. Of wanting something different. Better. More. Of needing to be done. And while he doesn’t fully grasp the implications of death, he certainly is capable of understanding that if he dies his treatment is over. Why wouldn’t he be? He’s seen it time and again: children we’ve grown to know and love – three more children in this two-week span alone; six in the past 5 months – who are done with their treatment by virtue of not having survived it.
And if his words and their foundation in such a heartbreakingly harsh reality weren’t agonizing enough, the manner in which he said them - thoughtfully, evenly, and well after the tempest had seemingly passed – was equally disconcerting. These were not hard words hurled in anger to be withdrawn or reworked into something softer at a later time. They weren’t yelled in the heat of the moment. They weren’t in response to a physical hurt or threat. They weren’t impetuous, unwarranted or unexpected. And if anything, they were long overdue.
No, far from being impulsive, this was a spectacular recapitulation of what he has been indicating for some time now. In every imploring “Do I have to?”, “Will it hurt?”, and “How much longer will this take?” In every eyes scrunched tight tell-me-when-it’s-done! facies; every pleading do-I-have-to? stare, and every anxious what-else-is-going-to-happen-to-me today? eye dart. In every shoulder shrug, back-and-forth shuffle and hunched over, head bowed stoop. In every morning of late that he cannot – will not – get up; or – when eventually coaxed from bed, he begs to return to it long before his usual bedtime. In every picture he draws with sad-faced subjects, and in each pancake he chews down into the shape of a frown.
It used to be, in the early months of treatment when Callen was 4 and enduring multiple painful dressing changes each week, that he would scream, “Stop! I need a break! STOP! Brreeeeeeeaaaaaaaaak!!”. As often as every few seconds - as the tape pulled at his arm or chest taking bits of tender flesh with it – he would cry out for relief. And when it was finally over, we’d marvel at his bravery, praise his acquiescence and encourage his acceptance of what had to be.
With time, experience, coaxing and age his cries lessened. His upper lip stiffened. His jaw became set. And the screaming stopped. At least the kind that we thought to be listening for.
Callen has been trying to tell us - in softer but no less uncertain terms - that he needs a break! And not the kind that comes because his liver is so poisoned by drugs or his brain so inflamed by IVIG or his immune system so compromised by chemo that he “gets” a treatment holiday. Because his reward for getting better, feeling better and doing exactly as asked is always the resumption of more treatment.
How much more can he take of this process? Or give to it? How many more times must we tell him it’s okay, when every fiber of our adult being screams that it is anything but? Because the truth of the matter is this: there are no breaks. At least not the kind that are in any way meaningful to Callen. Just sixteen more months of precious childhood moments being ripped away. Bit by excruciating bit.
