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.