Happy Campers

Post tower-climbing and zip-lining

We had such a nice weekend.

We spent it at the Hole in the Wall Gang Camp in Ashford, Connecticut — the camp Paul Newman founded as a place for kids with serious illnesses to get away from their troubles for a while and “raise a little hell.”

Growing up in the next Connecticut town over from where Paul Newman and his wife lived, I remember being aware of the place for a long time — it was founded in 1988 — but did I ever, as a happy suburban teenager, think my future family would have reason to go there? “Pshh. Yeah,” I might have said, while casually checking to make sure my feathered bangs were adequately hair-sprayed. “And maybe monkeys will fly out of my butt.” (Name the reference, win an AC/DC t-shirt!*)

But I can now count the place as one of the unexpected gifts and blessings of having a child with cancer.

I grew up at summer camps (and, yes, wrote a novel inspired by those experiences) so the camp scene is something I’m very familiar with — the fresh air, the bunk beds, the dining hall meals, the repeat-after-me songs, the preternaturally enthusiastic counselors.

Hole in the Wall Gang had all of that — plus Newman’s Own brand condiments and lemonade, to boot! — but there was something especially magical about the fact that all of the families there had faced (and were still facing, in many cases) the suckitude challenges of cancer. And all the staff — many unpaid volunteers, and many former campers themselves — knew it, of course, yet were at the same time determined to help us forget it for a little while.

The lovely dining hall, complete with moose head.

There was an unspoken awareness of the crappy little boat we’re all in — and some talk between the parents about our respective situations, which is gratifying. But little to no acknowledgment of it in the actual programming and events. It was all about having a chance to exhale and enjoy.

The girls want to come back for kids-only, week-long summer sessions when they’re old enough. (They have a special week just for siblings, so Elsa would be able to go, too. She’d go this year if she could, but the minimum age is 7.) We’re ready to go back for another family weekend. And hopefully Alastair will be doing a show there at some point this summer when his new album for kids with (and without) cancer comes out.

Re-entry to real life has been a little bumpy, especially for Clio, who was just despondent when she had to go to the clinic yesterday. She’s tired of this shit. We all are.

But we also feel like we’re on a home stretch of sorts: She only has 7 more big, in-the-thigh asparaginase shots left, and two more cycles of chemo + high dose steroids. After that, we’re down to only 2-3 clinic visits a month, (plus a weekly blood draw at home from a visiting nurse) and lower-dose steroids and chemo. AND we can say good-bye to twice daily blood thinner shots.

This is all within the next 8 weeks. After that, her hair may start to grow back. She’ll probably have more energy, and her legs won’t get tired as easily.

It’s going to be a great summer.

Some more pics from the weekend:

Moockniss Elsa-deen

Clio’s fabulous circus train, built with help from the camp director, Matty.

Everyone was blown away by Elsa’s climbing prowess….

…and Clio’s performance (complete with Winnie The Pooh costume), singing with her dad at Stage Night. Note Elsa twirling in the background in princess garb.

I wasn’t half-bad myself.

Fishing was a new and totally fun experience for the girls. (Would have been better if they let us eat the fish, in my opinion….)

Thank you, Paul, you handsome devil.

* * *

On another, far less important note, I have a couple of new pieces up elsewhere on the internets that you may or may not be interested in reading:

1. My essay over at The Millions about the strange and somewhat heartbreaking experience of having Double Time published 7 weeks before Clio’s diagnosis. The Book That Didn’t Break Out and The Disease That Did.

2. Just for fun, my “Mother’s Prayer for Privacy,” up at The Stir, in which I plead for the simple courtesy of being able to pee in peace.

*Not really.