Home Away From

We checked into Benedictine Hospital yesterday, as we were unable to manage Killian’s pain at home. A spot near mid-spine sent Killian into a wheel chair last week. He kept asking people to poke their fingers down deep in a certain spot to relieve the pain. Once, when I had my thumb in up to the knuckle, I felt something I suspected was disease. Little Jack Horner from hell. Josh (acupuncturist) thought so too when he came over to work on Killian. Frankly, I think Killian knew all along it was disease. However, when the spot was confirmed as more cancer this morning he was very, very upset. He said, “I feel stupid that I just keep hoping.” But, not even a half hour later he was laughing about something. A tipsy guy was giving stupid answers on Cash Cab. It’s clear the preservation of hope is his life force. He disconnects from what is happening in his body so he can wring enjoyment out of every moment possible. The disease on his spine eroded bone. There’s a fracture. His back is broken, and he’s laughing because the Cash Cab drunk couldn’t remember the word “kibbutz.” It’s infectious.

We have the most beautiful view we’ve ever had in a hospital. Killian’s drifting in and out, but says “wake me when the stars are out.” Last night he had quite a bit a bleeding, and it looks like it’s starting again. As usual, we’re able to manage it with Yunan Baiyo. That, and the remarkable clotting power of his otherwise healthy young body. They let us use Yunan Baiyo here without the docs freaking out. We’re on the hospice floor, and they pretty much let you do anything short of a keg party here.

The plan is 3 days of radiation to the spine. The first was today. It’s conceivable we could go home by the weekend—depends on how well the pain is managed

FIDDLE & DANCE

Dominica, our social worker from Hospice, says, “Killian is drinking VERY deeply from the cup of life.” It’s been a comforting phrase for us and helps steer a positive perspective throughout the more difficult moments. Sometimes, however, I get an image in my head of Pooh, struggling so hard to extract honey bits from the bottom of the jar that he gets stuck. Pooh was too witless to feel embarrassed, or angry, or frustrated about being stuck: he felt “bothered.” In contrast, Killian struggles with many feelings—from sadness to intense anger—because his body leaves him stuck. But he keeps drinking….deeply drinking.

This week Killian attended the Ashokan Fiddle & Dance Western Swing Week camp. To characterize the culture of this group is not easy—they run the gamut from good ole’ boy Texans and college professors to Red Hat women and precocious kids. What they have in common is guts. Each year, for a vacation, campers brave considerable wetness (being the first of the Fiddle & Dance sessions of the season, they’re subject to the most seasonably-incessant rain the Catskills can dish out), and overcome ego obstacles as they expand past their comfort zones to learn new dances or songs (in front of their children, and their girlfriends and strangers no less!) So, they got guts. Lots.

Ashokan is a rustic camp and not meant, in any way, to accommodate seriously ill people (much less children). I gave Jay and Molly and select people a heads-up about what condition Killian is in, fully anticipating that his being at camp might be too much and they’d ask us to reconsider. They didn’t. I told them I would be at camp with Killian, and that he would likely only be there a few hours each day. I said I would be armed with all the medical equipment we use at home and ready for anything that might happen (which is abstractly true). I suggested I give a heads-up and reassurance to all the campers at their first gathering. Jay wondered how this might hit the newbie campers. After a few seconds, he decided that communities form in support of all members at these camps—regardless of their strengths or weaknesses. Heart-filled guts.

I did a little talk at the first gathering, but then (at Killian’s request) kept a low profile at camp. I described my role as Geisha Mom (walk 10 feet behind, with eyes cast down and try not to be seen using the cell), but really I was kept mercifully busy the rest of the time volunteering in the office. Killian went to camp all but one day, and made it most of the way through the culminating evening performance—wherein he performed with 3 groups. Highlights of the week, according to Killian, included learning the basics of minstrel/pre-civil war style banjo, seeing Katie, Max, Lilly, Ava and the gang again, ukestra, the Django band, and jamming with Robert and Matt.

The moment of moments was suggested by one of the campers. Jay came to Phil and me before the final Root Night show and asked how we would feel about them naming the performance pavilion the “Killian Mansfield Pavilion.” Both of us welled and were beyond touched. We reached for one another to hold each other up. Jay asked if it was O.K. if he announced it that night during Root Night—wondering how Killian might feel. Phil was sure Killian would love it. We both went from tears to laughter when we realized how the rhyme would rule—that it would be called “Killian Pavilion” regardless. And, that’s just how Jay announced it. After the announcement, a surprised Killian said, “It’s so sweet, so sweet, and means so much.”

Jay, Molly, all the Western and Swing Week folk lifted our boy’s spirits in a way only they could. Killian made me stop at one point when I was walking him to a class and said, “this place is incredibly special: you swim in music as you walk, you eat and sleep in amazing music… and it just makes all this beauty here more beautiful.” The Ashokan Foundation is preserving this slice of heaven. The main structures have to be torn down and rebuilt in the next two years. The Killian Pavilion, along with some of the historical buildings will be the only structures staying the same. Here’s a link to a film about what’s happening at Ashokan Center. We’d love it if we could give back—even a little—of what this place (and its stewards) have given Killian and us. If you want to help, please make a donation in Killian’s name to the Ashokan Foundation. When you get an email confirmation, return the email and let the folks at Ashokan you made the donation in Killian’s name.

We sleep. We have to. Though inevitable, I resent the time wasted. In fighting off the midday drag of exhaustion following a restless night, my adrenaline kicked in on seeing a giant brown bee. I mean GIANT. This guy was easily two inches. Then, I remembered my dad saying, “god gave bees wings so they wouldn’t bump their butts on the ground.” I think god’s work is mercurial like that. All the order in nature occurs through a series of random and chaotic events. In the course of living we try to string together chaos to make meaning from improbable sets of wings.

This story's the bees-knees, wings and all. Cally’s Tang Su Do class had a year-end party. She said it wasn’t fun—that everyone in the class was from Woodstock Elementary (not her school) and she felt left out of their conversations. Then, she told us that when she tried to play ball with a group, this kid named Leo said, “pass the ball, fatso.” She told us she emphatically told him, “don’t call me that!” but that it got worse because another kid named Ben chimed in response, “what's wrong fatso?” Cally told me some of this story the day it happened. I told her then that as she was doing Tang Su Do for fun, she ought to tell Marilyn (the teacher) that being called names was not fun for her. I told her that I could tell Marilyn myself, but that I thought she would feel more relieved if she stood up for herself. She brought it up again in the car with Killian, Pops and me on the way to the movies. Killian was outraged. First he asked, “is something wrong with him, you know, mentally? Because you’re not at all fat, so he has to be a little wrong in the head.” Cally, laughed, saying, “no, he’s kind of normal, maybe even smart.” “Well, then. I’m going to kick his ass, the little turd face!” – said the boy who can barely walk, or talk and at this point weighs as much as a wet hen. Cally was glowing as they laughed together in the back seat, plotting the torture and destruction of Leo. At some point, I was pleased to hear Cally say that she would prefer from a practical standpoint to speak up for herself rather than Killian "kicking Leo's ass."

As we arrived at the theatre, who was in line buying tickets to the same movie? Leo. Cally pointed he and his family out as they stared at Killian (not an uncommon occurrence for our public outings). Killian, bandaged, shuffling—a dramatic sight regardless—fixed a glare so deadly at Leo that he cowered at his unwitting father’s side. I told Killian, “stop that,” in mom voice. It’s ironic when you use mom-voice on the outside because it’s the right thing to do, but on the inside you’re laughing maniacally like a five year old who just got away with something naughty but delicious.

Butterflies

We got out Saturday, on a short trip to North Adams Massachusetts. Killian wanted to go on a pilgrimage to see origami master Michael LaFosse and visit the Origamido studio in Haverhill, MA where he and partner Richard Alexander make the best origami paper in the world. I asked BFF Breon if she’d arrange a visit, as I have mush-for-brains and can’t do logistics these days. BFF was tasked to see if she could find a time when Mr. LaFosse would actually be at the studio. She found out that the Origamido studio was closed, packed up and prepared for relocation to Hawaii. She actually spoke with Richard to discover their plans for a new life, and then told him about Killian. These guys are SO incredibly generous. He and Michael offered to meet at a halfway spot for the Mansfields, and said they would bring paper, books, a movie about origami that had just been made called Between the Folds, and some famous models from their collection of masters from around the world. BFF arranged a meeting at Mass. MOCA, an agreeable halfway spot, and came with Bob and Liam.

Killian was so excited and his expectations were absolutely exceeded. Not only did they bring all that marvelous stuff as gifts for Killian, but also Michael took Killian aside and folded with him. He folded with a master. Once, Killian told me that he wanted to learn from an origami master more than he wanted to be one. He had this vision of spending a good chunk of his life roaming the world and studying with various origami masters. One down.

Richard took the rest of us origami novices into another space and taught us to fold a couple of fun models that he and Michael designed. When I checked back in with Killian and Michael, they had folded two Midori Luna moths out of paper Richard and Michael made especially for this particular moth design. As they folded, Killian talked about the music project he and Ralph had been working so hard on. He said he really wished that more sick kids knew that acupuncture, aromatherapy…integrative therapies could make them feel better and told Michael he thought most hospitals really needed to do things differently to really incorporate these therapies. Michael said he wanted to create a butterfly for Killian’s foundation, because it symbolizes change. He told Killian that, like the butterfly, he thought Killian's wish would "pollinate," spreading the word about this cause. Killian said he’d like to use Michael’s design as the symbol for the foundation.

There is so much good in the world.

Storm King

Phil said, “we’re living Einstein’s theory of relativity…time changes based on perspective.” One day last week, shattered, he’d swept me off the floor and had taken me out for a walk. We realized we are in a spaceship: we exercise, eat, watch movies, drive the ship a little, tend tomato plants, play music, cook, write, go on hikes (it’s a big spaceship)… Because we move at the speed of light, it seems like nothing much changes within our ship. We grow beards—Phil, me, Killian, Cally, the cat (the dog already has one)…and only when friends and relatives make contact, and seeing their beards grey, do we realize how different the passing of time has been for them. They talk about plans. It’s hard to imagine how we can possibly reconcile the differences in time. We decline plans. This upsets some people, adding worry lines to their grey-bearded faces. We think about putting a sign on our door that reads, “no grey-bearded, sad or worried faces allowed,” but realize it would only mystify those entering an already mystifying situation.

When Killian feels well, we feel like we have time, the same kind of time everyone else is keeping. When he doesn’t feel well, time conflates. There are hours in a day now when we keep the same time as the rest of the world, not days in a week.

Sometimes Killian animates—most often for visitors. He decided, suddenly, he was well enough to go to Storm King Sunday. We walked Maya Lin’s Wave Field. We watched Cally run the waves, arms outstretched, using momentum from down to run up, making like a bobbing sailboat. They fought in the car on the way home, then they slept, leaning on each other for the rest of the ride. If the slice of that day were all you saw, you might not understand how things have changed.

Nice Peace

I’m watching Killian play the jazz standard Guilty with Phil on the porch. Yesterday, Killian flexed his forearm for the first time in a month and said, “it doesn’t hurt when I do this.” As the sun lowers, that’s his 2nd day with no pain “in months and months.” My guess is, the radiation to the arm has kicked in and has killed enough of the encroaching bone disease to put an end to the pain there. We are drinking in the peace, gulping it actually. Though many exciting things are happening with Killian’s music project, he was thrilled most for Cally today. They are so dear, and their relationship is such a gift for Phil and me. One year ago, she began asking the editor of the local bi-weekly, the Olive Press, if she could take over the Kids’ Page. This column has been written by another girl for maybe four years or more, and Cally had VERY strong ideas about what she’d like to do with it. The editor of the paper told her to start with letters to the editor. So, one year and lots of letters later, he contacted her to say she had the column! AND, though she has a real deadline, she gets paid! She says her first purchase will be a Sham-Wow. She emailed the editor, “I feel like I will stick with this forever… this is something I can really call my own.” Here’s her first column (if you’re local, pick up this week’s Olive Press OR Phoenicia Times and look at the back page (prime newspaper real estate, by the way…)

The Death of Try-it Tuesday

Last year, we had this lunch thing called Try-It Tuesday. It was supposed to make us like more kinds of foods. Some kids won’t even eat chicken patties, and Try-It Tuesdays were mostly about expanding our palates toward veggies. They would have ratatouille (like the movie), steamed broccoli, asparagus, and this really cool chickpea salad. I thought the Try -It Tuesday was most often good. I think I was the only one that liked the chickpea salad though. Probably a quarter of the kids in my school liked Try-It Tuesday food.

This year, we haven’t had Try-It Tuesday at all. The population of kids liking Try-It Tuesday was going down. My mom said they should start Vegan Wednesday, but I completely disagree. I told her kids would be upset by this, and that it would break their tiny, minimized, non-food-tasting hearts. But, I miss Try-It Tuesdays.

I would love it if we could grow veggies at school. We could take care of them, and it could be our responsibility. That would be so awesome! If the lunch ladies used the veggies we grew, I think kids would eat more kinds of veggies. It would taste fresher, and be more interesting because it would be what we grew. My brother said the Green Committee at the High School was talking about this. Editor, maybe you could ask your readers if they want to help me start a vegetable garden at Bennett. If they do, maybe they could contact Holly Heppner, who is working on the garden and wants to do vegetables too. I think if we make food with our hearts, the chances are the food will taste better.

C-a-l-l-y!!!!!! (Mansfield, 3rd Grader)

Town of Olive

Thursday, in the gray and wet and cold, a 16 year old in Killian’s school named Max left his home just after a near sunless dawn, went to the Ashokan Reservoir, at a dividing weir called the Lemon Squeeze, and hurled his body off the bridge. He paused long enough to phone the police and tell them what he was about to do. Then, a moment later, ended his life. His parents have no closure. There are days when I think there is no such thing as closure. Then, I imagine there is a book being written, called The Town of Olive, and all the stories in it become inspirational life lessons for millions around the world, and people find true comfort in the wisdoms of this book. I imagine this town called Olive as a later day epicenter of human struggles directly informed by our ebb from or flow toward the divine. God, in this book, wants us to find each other and to love one another. But, we’re the ones, we people of the town of Olive, who make these stories a really good read—a potboiler. Max ripped out the pages of his story before it was finished. The other stories change too, because of these ripped out pages. Some of the changed stories get edited out because they are not inspirational—stories about bitterness, regret, too much drinking, being stuck… And, some become the best stories in the book.

That same day, Killian went to school at 11:00 a.m., after having a bad morning with pain. He’d done so much morphine and was so worn out by the pain (as well as the final radiation treatment for the disease in his arm), that he wasn’t sure he could make it through school. We went to a café, and after tea and a tart he said he thought he’d like to go. When he got to school at least a hundred kids were wearing blue shirts that read, “Team Killian” on the front, and “Just Appreciating Life” on the back. A girl named Gabriel, inspired by Killian, made the shirts. The project is, as I understand it, an expression of recent positive changes in her life, a new direction for her. The counselor at the school phoned me a couple of hours later to say that she had spoken with Killian about Max and that he seemed upset, saying to her, “it’s not fair.” I asked if it seemed as if I should come get him, and she didn’t think so. By the end of the school day, the parking lot was ridiculously full, cars parked every which way. All the parents felt they needed to be there for their sons and daughters. I, myself, had turned down several offers to pick up Killian to insinuate my car there. Nobody was “thinking green.” Killian got in the car and told me about the t-shirts, saying, “I felt the love, I did, but it was so weird that it was on the same day Max committed suicide—this message in everyone’s face.” I told him that the counselor had phoned me. He said, “why would she phone you?” I said, “because you seemed a little upset when she spoke to you.” Killian’s face screwed up all perplexed, “I didn’t speak to a counselor today.” I let it go. His perceptions have been changing. My new prayer is for his perceptions not to stress him out or upset him