In the opening chapter of "The Things They Carried", a series of short stories about the Vietnam War, Tim O'Brien introduces his main characters by describing in great detail just that: from the weight, shape and smell of gear, artillery, and ammunition to the worn out photographs of family, letters from a hopeful girlfriend or the pantyhose of a lover worn like a bandana around the head. O'Brien mixes the weight of the physical and emotional leaving you questioning which is heavier. I read this book in graduate school but find myself thinking about it now as I toil with the day-to-day load of Kenan's equipment.
I broke down last week over the suction unit, an end-of-life machine that has become my artificial appendage over the last year. It is heavy, awkward to carry, depressing to look at, poorly designed and startling in sound. I often wonder what the neighbor behind us thinks as he hears it turned on every five minutes during the early hours of the morning, Kenan's hardest time of the day. Point blank, our boy is dependent upon it. Even more so over the course of the winter when his first cold mutated into another, then another and another after that. Ever few feet, all day long, I seesaw between him and it. I bend over, pick him up, carry him, put him down, go back, bend over, pick it up, carry it, lay it down, from this side of the room to that, from here to the bed, from here to the bath, from here to the door, door to the elevator, elevator to the car. And then I repeat it on the way back. The cold temperatures don't help. The plastic tubing freezes, becomes rigid and disconnects, the wand (mouthpiece) follows, landing dirty on the ground.
On an easy day, the ones I hope return as the weather warms, we are dealing with simple saliva production. On the hardest, a thick mass of congested mucus builds in his upper airway. It starts as a muted gargle in his throat then grows steadily into a loud, thunderous clog. It is the sound of annoyance. I wait patiently for Kenan to cough and when he can't, I position him every way possible, just short of holding him upsides down. We do the nebulizer, the vest, the stander, but there are times it cannot be coaxed out. This particular day, we wait 9 hours, from 7am to 4pm.
I am a quick draw with the wand, maybe even the quickest. I take pride knowing Kenan can count on me to be there and do my part. When the moment arrives, half of me is prepared while the other is always caught off guard. For him, the force required to cough ignites convulsions that resemble a full body seizure. It is a frightening site. One that I cannot and should not take my eyes off of. In these anxious seconds, one hand finds the wand and is in position while the other reaches for the On/Off switch, a switch that SHOULD project enough off the surface it can be found blindly. But it does not and I loose crucial seconds fumbling for a trigger that would cost me my life if I were THAT kind of soldier. If Kenan swallows the dense volume of oxygen-restricting snot he has produced, it will not cost him his, but that is not the point.
Every night as I clean the machine as part of its daily maintenance, I stare at the bowl and study the reservoir that holds the content of my son's insides. They are suspended, stretched out in a hazy cloud of water. He is asleep in the other room and yet also right here with me. As I reluctantly empty it, without fail, my mind drifts to the day he dies: his body taken away, lying alone in a funeral home and yet through the relic of this bowl, right here, still with me. On that day how will I let something so valuable, so precious, so loved, so fought for go. Again.
Two counterintuitive points: The On/Off switch is recessed further back
than any other nob on the devise and you push it up rather than down to
turn the machine on. A side note: Tamsen has helped by decorating ours
with her stickers.