3.08.2012

little trooper

Yesterday.

The wifi isn’t available at the Philadelphia airport so I can’t post to my blog. Instead, I sit in an uncomfortable chair watching all of humanity (some of it anyway) scoot by with roller-bags in tow, some stacked high with slouching, zippered totes. An Asian woman pads along in Converse All-Stars followed by wrinkly men with their fish-faced wives, some topped with enormous sprayed hairdos, thick pancake make-up wearing flashy spangled pumps or ballet slippers. Legions of middle-aged men in khakis march and weave boasting five-o’clock shadows even though it’s only two in the afternoon. Out jumps a Hare Krishna wrapped in orange robes under a felted curry hat sloshing barefoot like a duck in his collapsing Sperry Topsiders. Slim women with jet-black manes swish by in black crepe pants and flip-flops. Young mothers push cooing babies in strollers. It’s the babies—the children—that punch me right in the gut. Even the infants appear more engaged with their world than Calvin ever has or likely will do, especially if he keeps having seizures.

In the sea of pilgrims I spot a girl of maybe four or five holding her father’s hand. Her other arm is pinched off just above the elbow, her pink coat tucked and pinned up neatly around the stub. I think of the memoir I just finished called Poster Child written by Emily Rapp. In it she recounts life growing up disabled having had her leg amputated when she was just four. Throughout its pages I winced at the hardships she faced in her childhood years and beyond: the surgeries, scars, bullying, discrimination, more surgeries, pain, cruelty, disappointment, fear, hopelessness, anxiety, ostracism.

Then my mind turns to Calvin who, just this morning, I kissed goodbye as I helped him step onto the school bus. Like Emily, he’s been through more in his precious little lifetime than many adults might ever encounter in theirs. He’s an effing little trooper, I think.

Calvin’s life flashes before me as female voices waawaawaa over the intercom and throngs of travelers blur past ushering wafts of reeking cologne, burnt coffee and greasy fast-food. In my mind’s eye I see Calvin boxed into his tiny plastic NICU isolette; a scrawny parcel weighing only four pounds and change who was ripped from my belly six weeks too early. He’s entangled with leads and monitors, IVs, splints, gauze, tape and breathing apparatus. In a blink I see his head sprouting a bundle of wavy wires like some Frankenstein kid who’s about to be jolted with a thousand volts, only it’s the other way around; his brain spiking jagged waves of electrical currents for the leads to detect and record. Then the image shifts to the endless stream of chemical drugs we’ve had to pour down Calvin’s throat trying in vain to stop his seizures; the hellish dietary therapies, the sleepless nights, the headaches, nausea, dizziness, poor balance, lethargy, fatigue, irritability, hyperactivity and any number of other side effects we’d never begin to know if he has experienced—is experiencing—since he can’t tell us.

Calvin has endured sticky eye patches meant to correct his strabismus, each having to be painfully removed several times a day. He’s been intubated twice during seizures—once horrifically without anesthesia—faced a painful circumcision when he was twenty months old and had eye muscle surgery at four. He has risked general anesthesia several times including during an MRI when he was just one. He’s had CT scans and nuclear medicine tests on his gut and urinary tract, sonograms on his hips and kidneys and countless X-rays. He’s battled bouts of pneumonia, bronchitis and multiple ear infections. He’s suffered scores of painful blood draws—at times prolonged—being stuck and bruised with needles in his arms, hands, wrists and feet. And last but not least he has been pummeled by torrents of vicious seizures that appear to have no end in sight. And yet, he endures all of this with relatively little grousing.

As the constant river of bodies streams past my feet I wonder, what have they all suffered? What will they suffer? And for an instant I am bathed in a feeling of deep empathy at seeing a doll-like child with beads of tears flowing down her cheeks because she doesn’t want to get on the plane. Her mother lovingly picks her up and the girl melts into a lazy embrace before drifting off to sleep. Tired and lonely, I can’t help but cry myself, and I don’t care who sees.

I slip my laptop back into its sleeve and shove it in my burlap bag glimpsing, for a moment, Calvin’s laminated school photo that’s peeking out the pages of Huckelberry Finn. Though sweet, it looks more like a mug shot than a back-to-school photo what with his droopy bespectacled eyes and slack, drooling mouth, and I am reminded of the young girl missing her arm. These kids, man, they’re all little troopers, I think. But Calvin, who’d be nearly impossible to take with me to visit my mom—and thus whom I’ve regrettably left behind—most definitely takes the cake. And what a bitter cake it is.

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Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

2 comments:

  1. Does Calvin still need the eye patches? My son wore them everyday for his first 5 or 6 years, and they did irritate and tear the skin around his eye, especially when he was a baby.

    His doctor told me of some skin wipes to protect the skin. We bought them at a medical supply house. The primary use is for people with ileostomies. You wipe it on, and give it a few seconds to dry. Then you put the patch on top. Later, when you peel the patch off, it doesn't irritate the skin. I can't remember if it made broken skin sting, but I don't think so. (I think I would have remembered that) I do remember it had a very distinct, sharp odor while it dried that might bother Calvin. Once it was dry, though, there was no odor.

    I wish I could remember the name. In my mind I can see the little green packet each wipe came in, but I cannot read the label.

    RR Julia

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  2. he has not wore the eye patches for years. he had eye surgery to correct the strabismus and so far it has worked well. thank you so much for your concern. xo

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