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.

Colin came home to his room, which has been transformed into a Minecraft habitat, complete with a PS4 and two versions of the game itself, including Story Mode, which he has been coveting for some time. After the hospital trip he played for a while, eventually assisted by Aidan, until he ultimately did take a snooze, his little body felled by the exhaustion of illness and the slow drain of being somewhere other than home. The Minecraft room has become a refuge for us all, and he loves nothing better than having the four of us in there at the same time. The inclusion of FIFA 16 (a soccer game) has made this much more appealing for Aidan, who has acutely distinct taste in the disposal of his free time.

Driving home from the hospital, coming down the long slope toward the city, wispy clumps of mist rose from the trees like wraiths slowly escaping the grip of terrestrial existence. The week leading into Christmas was unseasonably warm, though still often damp and grey. The sun now blazed in a pale blue sky, eager to reach between the bald branches with its radiance. The recent endowment of water seemed to be parting ways with the earth more quickly than it had arrived, which has been a slow drone of light rain in a dreary morning.

It felt like rainbow weather, but there were none of those to be found. All the same, and perhaps more enchantingly, rain hung heavily and plentifully on leafless branches, bejewelling otherwise naked trees with a profusion of illuminated drops scattered like liquid diamonds. The early afternoon sun lit up the still wet streets into blinding ribbons. To the east, the dull mousy fluff of rainclouds showed its backside in contrast with the insistently light-filled day that had emerged in its place.

Life is like this, painted with reminders that dark and light abut and intertwine each other. Following a week of sobering decisions, we enjoyed the heady anticipation of Colin’s new room. Every morning, our elves came to the house, sequestered themselves, and worked their magic. Nobody in the family violated the peeking rule, enforced through a soon-sagging strip of duct tape that I used as a reminder against accidental incursion, since it held no real force to repel peekers. This eventually became a comically powerful symbol for all of us, with Colin fantasizing about blowing it up. He would mischievously scamper over and release one end of the tape from the jamb but not touch the knob.

We were lucky that both boys were very good about the rule, endowed with admirable impulse control, though that didn’t keep Colin from trying to goad Aidan into cheating. On one occasion, he tried to enlist a visitor to take a picture to later provide for his inspection. All of this is well in line with his personality, which is one of the major domo.  He is Jabba the Hut sending bounty hunters out on missions, though a far cry cuter than Jabba. Of course, we all knew the theme of the project, and Colin had been providing input at school to our master elf, Tracy Robbins, who in her mortal existence runs the after school program at Northeast Elementary. Evidently, many of the children in the program (as well as a benefactor at the local Sherwin-Williams) also helped educate our Minecraft-ignorant elves on key elements of the franchise.

Though many people volunteered to help, the small size of the room made it impossible to have a large team contribute to the effort. We were delighted that it still managed to involve three generations, though the third generation didn’t do much work, as he is still a toddler and the only baby that Colin has ever seemed to like. We have long joked that Colin is a jerk to babies, and he complains that they “turn me into an old man,” which he says because we jokingly comment that the presence of babies or toddlers inspires him to grouse like an old man about their disruption to civilized life. Lucas has somehow broken through Colin’s crusty exterior, and he delights in little milestones enough that he recently came home to proudly announce that Lucas had learned to do high-fives.

The Minecraft room brought together many people not just in its creation but also for the day of the big reveal. As the result of serendipitous scheduling, a school caroling outing was planned a few hours after the reveal, just in time to share Colin’s amazing gift and the love that went into it with his friends.

We have never had so many people in our house. After holiday-ing up the joint and getting the basics in place (food and a sign on the bathroom door), we surrendered to chaos and did our best to make everybody feel welcome. After a slow start for Colin, he loosened up and was happy to see a few familiar faces in the house. Once in the room, he became entranced by the new game system and the comfortable nest of the loft bed. Even full of adults, he has an elevated refuge with its own roof.

The day was intense and joyful, a long stream of visitors, happy faces here to give and share in the love flowing at the edge of the visible spectrum through our little house. We are well cared for here in Ithaca, with the network of our community now extending to A Room to Heal, whose directors are based about an hour away but now know they are part of our eclectic family.

The project, though technically not a Christmas present, was perfectly timed with the season and is the most incredible gift, not just because it is incredible but because of everything it represents. When we came to Ithaca, we thought that this would be a great place to raise a child with some differences. In the back of our minds, the other alternative lurked, but I have always made it a habit to commit little energy to such thoughts until it became necessary, and now it has. To some extent, the Minecraft room supplanted Christmas in my mind, though of course that was purely my short-sighted adult perspective, and the days ticked closer to the holiday itself.

Christmas Eve, we had the most unseasonable weather I’ve experienced in Ithaca. With temperatures nearing 70, it seemed a shame to waste it shopping, but my role as chauffeur and organizational assistant to my mother forced me on the road on a balmy day animated by a touch of wind. The sky was unreal, as if painted by two different artists. The background was an airbrushed wonder with light pastels, something PBS’s Bob Ross would be proud of. A layer of hyper realistic clouds sailed elegantly in front of that backdrop, Frederic Edwin Church’s detailed hand setting them in magnificent contrast, using bright white and many shades of gray, before they glided in gently from the west.

A scene like that is wondrous and ephemeral, whisked away on the whim of the winds, the spinning of the earth, and everything else that makes weather happen. For my own part, I see no divinity in it or in its observation, but the moment enters me deeply with complex personal meaning that reduces simply to a sense of awe and gratitude. We have so much to be thankful for this season. The moment transports me from the task ahead (carting around my schizophrenic mother on a shopping odyssey) and the treasures I left behind at the house, a painful duality that gets increasingly acute as we feel Colin’s clock tick. It causes my already thin patience for my mother’s quirks, antics, and insane demands to evaporate like that winter rain.

It’s hard to not think about the time I am spending away from home and the boys, even if it is just hanging out with Colin in his room. He’s become quite vehemently attached to us and wants one of us around at all times. He’s never been a clingy child, but we’ve seen this sentiment growing in intensity. We don’t need to psychoanalyze him deeply to understand that this is both reasonable and a demand we ought to acquiesce to. Under different circumstances, we would try to encourage independence, but his new fear of being alone is not part of the standard parenting playbook.

When I finally was able to drop off my mother on Christmas Eve, the moon had risen in the east, bright and fat as the sun lost its hold of sky. Close to the horizon, the moon was enormous, cemented to the earth rather than hanging in the heavens, though it still managed to continue climbing higher in its dogged traverse across the sky. It was so magnificent that I called Ian to take the boys outside and see it, though I wasn’t sure they would have the same vista from the house. If we couldn’t see it together, at least we could try to experience it simultaneously.

As the sky darkened, the moon’s topography was so clear that I felt I could reach out and caress those contours with my fingers. We live in our own version of reality, balancing knowns with unknowns and uncertainties to try to create a framework to process the present. It is a shifting dynamic dependent on a vast amount of input and assumptions.

Lately, Colin has been giving us none of the odd moments or transient pains that make us turn to one another with “the look.” Fleeting as any discomfort may be, this is the very hallmark of brain tumors and their hide-and-seek pattern of symptoms. I hope this means that the everolimus is working, that it is buying us not just time but very good time.

To look at Colin today, it appears there is nothing much different about him. He’s lost some strength since earlier in the year, but we’ve been withholding growth hormone since March, which would cause his body composition to shift, losing muscle. His right side is noticeably weaker, throwing off his gait
and making him (reasonably) more apprehensive about his ability to control his body in physical endeavors. We’ve certainly seen a psychological toll of the last few months, but now that we’ve adjusted to this new normal, things seem remarkably stable.

With Colin looking and acting well and a reason to think this may be sustained, we have a foot on two shores. Our weighting has shifted in one direction, with our focus on the room and the holidays, and fueled by Colin’s overall condition. We are luxuriating in this gap time, Colin’s surprising delight at a new Pikachu doll, and the many lovely moments that have inspired him to explain, “This is the best day ever!” several times in the last week. It’s certainly not the time for us to peruse casket designs, and it’s still impossible not to wince when he talks about next Christmas. Reminders lurk around every corner, most painfully when they come from Colin’s own mouth.

In a mix of delusion, hopefulness, and realism, we are grateful for this time, these fast-and-slow days where doing not much of anything at all is the greatest treasure and luxury. I touch the moon, even when I know it is impossible, but I allow it to be so for now because reality will ultimately start seeping in at the edges and I fear that the moon will seem so far beyond my reach that I won’t even remember a time when it was in my grasp.