Colin has had a wonderful summer and really relished being at home. Most significantly, he has enjoyed a renaissance of himself: he is engaged, motivated, curious and vibrant. If Colin finds an adult to buttonhole in a conversation, his engine will start and keep going. On our return from Memphis, he consumed the entire flight from Philadelphia to Ithaca regaling a new friend on a variety of subjects. The real resurgence started shortly after leaving Memphis and has only continued since then.
September 10, 2016
July 2, 2016
Colin lies down on the table, head nestled in a custom head rest that still contains long strands of the hair we had to cut off a week before. I help him settle into his spot, but he knows the drill better than I do. I straighten his head and the tech puts the mask in place. He closes his eyes under the plastic mesh without complaint and she rotates clips that keep it in firmly in place during treatment. They show me how they line him up, red lines crossing to match pen marks on his skin that they redraw over small tattooed dots and lines on the chin of the mask.
June 22, 2016
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.
May 29, 2016
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.
March 29, 2016
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 miss 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.
January 29, 2016
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.
December 26, 2015
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.
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.
December 19, 2015
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.
December 4, 2015
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. (more…)