Thirteen years ago, you slipped from my body into the hopeful promise that greets perfectly formed infants with only the future ahead of them. The occasion of this milestone is more difficult than the two that preceded it, ringing with an extra hollowness in your absence. Under the pressure of this moment, I came to understand how this is different—not in the way that the heft of grief normally undulates—but in a way that is singularly attached to this age: thirteen.
13
I watch your friends cross the threshold into teendom, one
by one, getting lankier, adultish, and truly becoming who they are. Every
parent watches this process in amazement and horror, powerless to accelerate or
slow the pace of change.
But Colin, dear Colin, will always remain a child. We never had the luxury of imagining you grown up, nor have I ever entertained fantasies of a version of you that never collided with ependymoma. To cope with reality, I had to remain in the present and not indulge in dangerous games of what-if. I can imagine pieces of your personality expanded into the fullness of adulthood: gregarious, fun-loving, witty.
These snippets are not even remotely close to the fully formed humans who are sprouting in either your brother or your budding peers. The dissonance between the unimaginable and the raw truth of pubertal emergence is, to put it in a single word, heavy.
The world spins. The sun rises and sets as it will for
longer than humanity will tarnish the earth. And a birthday becomes a monument
to the distance between the present and the past. It is also more than that; it
is an occasion to remember and celebrate the guffaws and cuddles and the
fullness of a life well lived, if short.
But for a minute, I ask permission to sit with the weight of this number, 13, and its indifferent mockery. Maybe the solution is to ignore the numbers and focus only on the sunbeam smiles and indominable spirit that now gambol nimbly in the ether, freed from their corporeal bonds. Let it be so, the birthday wrapping in a fantastic bow the triumphant perfection of tragedy that willfully sheds its own misfortune. And let that delightful gravity pull stronger than the light-sucking grief that turns our heads to loss more than Colin’s legacy: perseverant light and the embodiment of hope.
The curtain is closing around America. In one week, everything has changed. The inexorable threat that has been invisibly barreling down at us is now giving evidence of its arrival. Ominous vibrations of the rails, dirt jumping on the tie rods, tell us the train is on the tracks. It’s coming.
This is a unique moment in the history of this country and
one that woke me up before my alarm already composing my thoughts. Shortly, the
sound of the train’s whistle will be audible to all except the utterly deaf and
the long puffs of steam will be visible to all but the utterly blind. There is
no genius to the prognostication that there will be a great toll of human
suffering in the coming weeks and there is little point to remarking on that
fact.
The arrival of COVID-19 has gone from an intellectual exercise
to an emotional one that has been accompanied by a spasm of hurried
preparation. Though I don’t condone the hoarding of toilet paper, I understand
the impulse to stock up on items we would rather not live without knowing that
challenging times are ahead. The true panic arose in those who thought we would
somehow be immune and that the dearth of cases was meaningful, even in the profound
lack of testing. Many seemed to believe this was a foreign disease, even as it
transitioned from China (very foreign) to Italy (not as foreign), but it now shows
its face as American as apple pie, waving the stars and stripes and singing the
National Anthem.
More importantly, even for those of us who have watched the
numbers and studied the insidious behavior of this beastie, things are
different now. Confirmed cases pop up closer to home and the threat I knew
lurked in our communities is starting to show itself. We stocked up weeks ago,
weeks before the rush, but it didn’t feel like we were about to be carried on a
wave, thrust off our feet by a natural force that we cannot control. We can
only choose where to stand on the beach and we chose to stand pretty damned
close to the ocean.
At this moment, we are the sand piper pumping its little
legs running away from the approaching wave. The bird can spread its wings and
fly above the ocean but we cannot, so we run—or try to—as fast as we can. The
wave will hit us; the question is not if but when and how much. Run, little
sand piper, run.
Here is the thing: the sand piper is an individual creature
that makes the decision to stand too close to the ocean and to run when it can,
but our current emergency is a collective effort. Right now, social distancing
is the only tool we have left to try to make this disaster manageable. Doing it
is not simply an act of self-preservation but one of community responsibility.
This crisis arrives in the midst of divisive politics and
divisive thinking. The initial response, bifurcated by political lines, is now
unified by a single goal: help your neighbors; think of your community; protect
the vulnerable; save your fellow Americans. As horrifying and ominous as this
moment is, it is also glorious and wonderful, an unexpected about-face to bitter
gnashing of teeth.
To be fair, many people are being dragged kicking and screaming
into the effort and many others are terrified of the personal consequences of a
protracted economic slowdown. These are real and legitimate issues but
fortunately are also visible to lawmakers and governments. In the same spirit,
we will get through this and we will do everything we can to make sure that the
American people survive as unscathed as possible.
This moment in our country’s history also coincides in an important personal one, the two-year anniversary of the death of my son Colin. Everything we are going through as a nation feels very familiar to me. We knew for several years that his brain cancer was incurable, yet he endured and we kept finding pathways to give him more time. After we struggled in despair through Christmas, he reached his ninth birthday, then the next Christmas, then his tenth birthday and another Christmas, before his brain was too crowded out to keep his little body going.
Colin at Hanauma Bay on Oahu
The entire time, we knew what was going to happen but lived in the moment until his moment did ultimately arrive. In the meantime, he joined the Ithaca Police Department and had a stellar career with the force, finding satisfaction in an ongoing relationship with his comrades and the community. He was Officer Colin and he emblemized hope and commitment to helping each other.
I am glad that Colin didn’t have to live through this, but it
feels like he is here. He would have been frustrated by social distancing and
would have decried the selfish emptying of shelves driven by fear instead of necessity.
However, he believed deeply in the importance of helping others and he would
have embraced that mission, not just through social distancing.
I am seeing it now: people checking in on each other and
neighbors finding ways for the vulnerable to reach out for help even if they’re
not connected by social media. It is the video chat drinks and the random
texts, the overwhelming number of volunteers offering to help the school system
provide meals to children and families in need. This is Colin.
Personally, I feel acutely prepared for this after dealing
with the upending of our lives that came with Colin’s initial diagnosis. Ask any
cancer parent who’s endured the rigors of high-dose chemo: the vigilance, the
hand washing, the fear of contact are all part and parcel of that experience.
These are obvious and non-trivial parallels, but it truly goes deeper than
that.
I have described it as passing through the veil and becoming
a cancer parent. It’s a one-way door. The world changes on a dime: routines, priorities,
and goals. Things that you took for granted are now different. Was our child
going to survive? Would he ever be able to eat, walk, or talk again? The future
Colin that we had imagined before the diagnosis evaporated in a second, not to
mention the upheaval of treatment and a surprise move to Memphis for nearly a
year.
We cancer parents understand the chaos that is now happening
on a national level. So many questions and a vast sea of uncertainty beyond the
health and medical concerns. Will the kids finish the school year? Probably
not. Sports, formals, graduation and the concomitant parties, all gone. This is
a season rife with disappointment and unexpected change.
Yes, I get that this is disorienting and distressing, but I
also know there is light at the end of the tunnel. I walked out the other side
the better for it. At the moment, I see a massive orientation around what is
most important in life. Everything else gets sloughed off and what I see remaining
is our connection to others. Social distancing is generating new manifestations
of social outreach and it is forcing people into a community mindset.
How enduring these changes will be is uncertain. As with all things, your mileage will vary. I am especially curious about the softening of political boundaries once the intense need for national unity recedes. In this moment, I would like to imagine that it will persist at least in some form and that tragedy can bring with it constructive good. Colin is next to me, whispering in my ear, “Never give up on your dreams.”
Colin always said, “Never give up on your dreams.”
The seasons have flown by in a time lapse blur, flashes of the momentous and the mundane gliding by with relentless speed. It should come as no surprise that Colin has continued to carve his own way in the wilderness, one that nobody did or could have predicted. Following the September news that the tumors had exploded and that his brain was swollen with edema, he continued to improve clinically. The police work seemed like a magical balm, and maybe it was, as the days and weeks slipped into months.
Fall has arrived, carried on the sharp wash of cool air streaming through the open window in the morning. I wish I could push it back, force the leaves to turn green again, and will summer to stay in place. Time is not our friend, and the change of seasons is yet again a reminder of the puniness of human desire to bend the world to our bidding.
Community Policing at Mrs. Washburn’s First Grade Class (Northeast Elementary)
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.
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.
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.
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
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.
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
