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Latest Blog Posts

Lucky 13

Colin has completed 13 of 30 radiation treatments and is more than halfway through the portion of treatment (20 sessions) that involves the whole brain and spine. This is our lucky 13, lucky in so many ways. We are lucky to be here at all and witnessing the joy of a child who had been slipping away from us only a month ago. We are lucky that he is cruising through treatment and cooperative with the process.
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Same as it Never Was

Clouds ascend like sculptures, backlit by the setting sun. Wispy pink columns stand in dramatic array, the clump on top of one stack embellished with a viciously straight contrail that angles upward like a laser beaming from a cyclopean eye. It is a tiny thing but still audacious enough to pitch a galactic battle against an unseen enemy. The day closes over the Mississippi, with stormheads threatening their bounty of rain from the south. Colin and I have left the gentle wash of music and companionship of old friends on Mud Island, a sanctuary of gentile life only a stone’s throw from the urban grittiness that awaits patiently on the east shore of the mighty river.
Continue reading Same as it Never Was

The Fickle Boon of Uncertainty

Winter snuck by us, a few bouts of snow and frigid air between Christmas and Easter only mockingly reminiscent of winter last year, which came with a roar and didn’t budge, reluctantly giving way to spring. By contrast, even just at the turn of the New Year, spring felt close at hand. We were unfortunately fortunate enough to be away much of this disappointing winter; as skiers, we weren’t missing much back home while we skipped off to Hawaii and, not long after, the Bahamas to the resort Atlantis. During the latter trip and the visit to Camp Sunshine in Maine soon after, the shadow of the fateful MRI in Dallas tracked us. The cold invisible fingers of that news, the dreaded and relentless progression of disease, were impossible to shake off, even in the warmth of the blinding sun.

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Playing in the sand at Atlantis

Continue reading The Fickle Boon of Uncertainty

Hawaiian Sunrises, aka Aloha Ra

It’s easy to get stuck on an idea: culturally imposed, personally fabricated, or more often a blend of both. For various reasons, I got it in my head to watch sunrise as a family every day of Colin’s Make-a-Wish trip to Hawaii. Colin himself has a certain fascination with the sun and the warmth and comfort it brings. Given the time difference between New York and Hawaii, this quest wasn’t as insane as it sounds, and one of our planned excursions was a sunrise jaunt to the summit of Mt. Haleakala, the dormant volcano that forms the highest point of Maui. I wouldn’t have considered it for the kids had we not been rolling off of a five-hour time difference where leaving the ship at 3 am equated to getting to school.
Continue reading Hawaiian Sunrises, aka Aloha Ra

Christmas Wishes

The pressure to synthesize childhood magic is never more intense than at Christmas, the official season of idealized future memoires. If you fail as a parent, you are assured to leave behind you a wake of ruined dreams and the bitter shards of a lifetime of disappointment. Multiply the pressure by some factor if your child is eligible for hospice; divide by another if that child knows that Santa is his parents. I’m okay at math, but not this kind of math, so I’ve thrown up my hands and capitulated to the random forces of life and improvisation.

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My Christmas Elves

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A Storm Breaks

I walk to the car under a sun that is determined to dry up the rain that has soaked the town, Colin in his wheelchair, spent but less feverish after a visit to the hospital for routine maintenance of his sub-cutaneous port following a fever. We’re fairly certain that Colin merely suffered from an ailment, with many of his schoolmates struck down by similar afflictions, but the merest chance that a spike in temperature could be the first sign of a dangerous line infection sent us scrambling to the local Emergency Department the first thing in the morning. It is standard procedure, a minor inconvenience in our world, which followed a very non-standard and magical weekend.
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O Tannenbaum

Colin squints in the sunlight posing next to his brother in front of this year’s Christmas tree, which towers many yards above them. This behemoth dwarfs our house, but we will only bring the very top inside. It’s an absurd way to pick a Christmas tree, trying to determine from far below whether it has appealing proportions and density, but that’s not the point this year. Colin later declares that this Christmas tree farm is “be-au-ti-ful,” and this is all that matters, that and our experience here as a family at the Christmas-tree-farm-that-never-was but is now part of Greensprings, a nature preserve and cemetery.
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The Magic in the Mundane

Sunlight glimmers on imperfections in the plane window. I call them imperfections, though I suspect they are fractures in the plastic from the stress of flight, the long parallel tracks streaming down at an angle in silver lines like incandescent rain drops. There is no rain, of course, high above the field of white puffs below, in what is someone else’s pale blue sky, dotted with clouds on a bright day. Continue reading The Magic in the Mundane

Never Give Up

When we finally arrived in Boston to start proton therapy for Colin, the branches were already bare in Ithaca, but many of the trees along the Charles were still holding their color. The ginkos are just now releasing a carpet of yellow fans on the sidewalk. The night before we left Ithaca, the sky was crystal clear and full of stars; celestial bodies struggle to emerge above the cityscape, though Venus is tenacious in shining through the urban smudge. Continue reading Never Give Up

Of Mice and Little Boys

A few weeks ago, I heard the first doleful honks of Canada geese overhead, a broken vee portending the migration towards more temperate weather. This spurred me to mourn my loss of the change of seasons and a move into the crisp air of fall that is so invigorating, brightened by the cascade of brilliant leaves. Color has barely begun to kiss the tall, verdant maples in the neighborhood, a transition we would lose with our decision to migrate, like those geese, southward to Memphis. Continue reading Of Mice and Little Boys