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.

A previous owner of the property had planted these trees for the purpose of having a farm but never realized that vision, so the seedlings turned into the majestic giants that they truly aspired to be. However, as non-native species, they must go, and every year the association chips away at it (literally) through Greenery Day, where tree tops and boughs get carted off the property to adorn people’s houses.

It would be easy to see this as a morbid holiday outing, but we came to start a legacy of memories we are building at this peaceful place that is full of life. During a visit to the infusion room at the local hospital, Colin told one of the nurses that he thought graveyards needed to be redesigned to be more colorful. We recoil from the typical modern process of dealing with our dead, the embalming fluid and ornate heavily treated caskets, as a futile effort to preserve something that is already lost. It feels like an unnatural artifice that only serves to remind us of the volumes of chemicals we have pumped into this child in our efforts to give him a future. Enough.

Back to Nature

No more chemicals and no more devices; we chose to withhold (and remove, in the case of the shunt and port) all of them from his perfect scarred up little body and donate tumor tissue for research purposes. Colin will return to the earth and to life and become part of a beautiful meadow that preserves important open space for birds and other wildlife. We selected a spot in the open sun, something else he mentioned during his conversation at the hospital. I’m grateful I overheard these comments and that he could contribute to our decision without being embroiled in the middle of it.

On the way home from the trip, tree tied to our roof rack, we passed a traditional cemetery, angular granite faces staring out somberly at the road. “Is that a graveyard?” Colin asked squeamishly. Upon hearing it was, he replied that he didn’t like them. Why not? “They make me want to cry,” he responded.

We are fortunate to live in a community that has such a thing as a cemetery preserve, and we realize it is a luxury to be able to make this choice. When we first arrived, not entirely knowing what to expect, I shuddered reflexively at the sight the mounds in the field indicating fresher graves. I should have expected it and I seized up inside thinking of the boys’ reactions, since our discussions about the trip had revolved around the tree acquisition rather than the other purpose for our being there.

Boys, what do you want to do this weekend? “Get a Christmas tree!” It was easy to anticipate that response, and we wryly answered, “Great idea!” having already penciled in this trip. All the same, I had in my mind pictured the rolling hills and fields more readily than the person-sized lumps of earth. Despite the tasteful but blunt sign at the entrance, we were able to be there with Colin none the wiser and Aidan introduced very gently to the idea of what this place was and what it would mean to our family. When Ian suggested that we go elsewhere to procure a proper tree, Aidan insisted that we find one at Greensprings.

The paths for driving maintenance vehicles are clearly marked, and the open spaces may or may not be older gravesites. It’s hard to tell unless you go up close and look for a flat natural marker embedded flush into the ground, though people may elect no marker at all and nature can engulf the outward signs of the gravesite. A few are fairly dolled up with natural stone, one in particular that is for a child around Colin’s age. Despite the rules about marker placement and adornment, the place is infused with compassion that drives some flexibility beyond what is written in black and white about what is allowed.

Chilling Effect

The week that we picked Colin’s site and worked out logistics with the funeral home, we saw subtle changes in him that made the downward trajectory feel real and present. The chest-gripping vertigo took hold, the sense of impending acceleration, and we abandoned the Japan wish trip for a more manageable Hawaiian cruise; if the everolimus works and a longer trip to Japan (which he still looks forward to and talks about on a regular basis) is feasible, we can arrange it ourselves. International trips can’t be rushed by Make-a-Wish (this includes Atlantis, which was his second choice), and the timeframe to get to Japan seemed like a far reach to feel confident that he would be well enough for it to be a good trip if he was still alive at all.

Another item that made it onto our list of rush items was a room makeover. Colin’s room is tiny and has been a jumbled mess for some time. He loves Minecraft and we had the idea of clearing it out, putting in a new bed, painting the walls, and putting up some decals. We figured some crafty friends could help us with some of the painting and we could pull it off quickly. However, this project snowballed beyond our imaginations once we handed off project management to our wonderful friends and then enlisted the help of A Room to Heal, an organization based near Binghamton that puts together such projects for children with debilitating and life threatening diseases.

People have been asking how they can help us, and we have been begging them off for months, knowing that we would need help but not sure exactly what that would be. The Minecraft room project has inspired the creative spirit of many wonderful elves, who also erected our very eccentric Christmas tree for us. Even forewarned that this was Charlie Brown’s Christmas tree, it was still a hilarious surprise to be greeted by those spindly, sparsely populated branches in our living room. We all laughed, me uncontrollably, when we first saw it, but Colin told me it was “amazing” when I asked him about it the next day. With some lights and ornaments, it certainly looks festive, even if it doesn’t have the physique of a traditional tree.

Every single light and ornament is visible in the spacious gaps between the branches. We can hang absurdly large ornaments that wouldn’t make the cut on a larger tree, and the branches, though spindly, are quite strong. It is a tree we will never forget in a season we will never forget, and it is a true gift for us to attach the memory of so much mirth and silliness that links back to a meadow in Newfield that will welcome Colin in its organic embrace.

The more living we do while actively contemplating the process of Colin dying, the more it feels like his death will bring with it these memories and an intense sense of connection. The room project symbolizes the involvement of the community in these last wonderful years that Colin has enjoyed in Ithaca. Every stroke of paint was applied with love, every carpet square cut and laid with attentive care.

A World of Change

Colin is folding into himself and, as he does so, he will be able to do so within a world of adaptive creativity. Minecraft allows change and transition that mirrors perfectly the process that Colin himself is going through as his body and mind reconcile what is happening within him. We don’t expect the downward slope to be even or even consistent; after a week where he seemed especially tired and off, he had a much better week. All of it could be random or it could be the everolimus working or simply his body adapting to its changing environment.

We have entered a phase of acute uncertainty with a known trajectory, and we must flow up and down a path that is utterly beyond our control. We have been able to work out many of the final details, liberating us from contemplating those issues at a time when it would be devastatingly sad rather than surreal and distant. I didn’t want to have to buy his burial plot, but it was better to do it when I could come home and hear him say, “I love you, mom” with a sweet smile on his face and I could squeeze him a bit harder and longer than usual.

The more connections we make along the way, the less tragic it feels. Colin got to meet Matt, the caretaker at Greensprings who will dig the hole for the casket and bury it. We will remember that meeting and know that Colin touched Matt in some way, and somehow it will soften the process. To us, Matt will not be a gravedigger but a jovial man who crocheted a very silly hat that he wore on Greenery Day. Removing the anonymity from our interactions also wards off the shades, even at the moments that are most likely to be cast in darkness, and it assures us of the power that Colin has to touch people.

Today, we have our very loving boy who wants only to spread happiness in the world, very much alive and well. Our ridiculous tree stands in the middle of the living room as a reminder of the reality we’d like to ward off as well as the value and magnitude of human connection. There will surely be more pictures of Colin smiling in front of those sparse branches, the invisible presence of everybody who has  joined us in his adventures filling the empty space and shining more brightly than two strands of lights ever could.