barn-raising

It takes a village to help when your friends' child gets very sick

on an otherwise ordinary night at the end of September, some friends came over to watch the lunar eclipse, friends whose two-year-old daughter was diagnosed nine months ago with cystic fibrosis. Their six-year-old daughter is Sam's oldest friend: they've been playing together for so long that I think of her as Sam's fiancee. Now out of the blue, the family has been plunged into an alternative world, a world where everyone's kid has a life-threatening illness. I know that sometimes these friends feel that they have been expelled from the ordinary world they lived in before, that they are now citizens of the Land of the Fucked. It amazes me that the mother -- forty-ish, small-boned, highly accomplished -- can still even dress herself.

Anyway.

Some of our neighbors were making little cameo appearances on our street, coming outside periodically to check on the moon's progress, as if it were a patient: "How's his condition now?" But we watched almost the whole time. It was so mysterious, waiting for the shadow to come, and then waiting for the light; the earth's shadow crossing over the moon, red and black and silvery, like a veil, and then receding, like the tide.

There were a few days this year at the very end of summer when everything was going wrong and it felt like the world was broken. I was far away from home and Sam wasn't with me and most of the people I was with were drinking a lot and there was an aggressive level of banter. I kept remembering Charles Bukowsi's line about being at a cocktail party and feeling like he was being pelted with tiny ping-pong balls. Finally I started to feel like a tired little kid at a birthday party, who has had way too much sugar, who is in all ways on total overload, and on top of it all, finds herself blindfolded for a game of pin-the-tail-on-the-donkey; not only blindfolded, but spun in circles before being pointed more or less in the direction of the wall with the donkey on it. But I was so turned around, so lost and overwhelmed and stressed that I couldn't even remember where the wall with the donkey was -- or even in what direction it might be found. So I couldn't take one step forward without there being a chance that I was actually walking farther away from it. It took me a whole day of confusion to remember that for me, the wall with the donkey on it is Jesus.

A few days later I got to go home. The first night back I lay in bed next to Sam and read him to sleep; heaven. There was an ordinary full moon in the sky; I studied Sam by its light and felt entirely pointed in the right direction. But our friends whose child has cystic fibrosis had left a message on our machine, letting us know that their little girl had been really sick again, but starting to bounce back. And that they were all okay.

Watching Sam sleep I kept wondering, how could you possibly find the wall with the donkey on it, when your child is catastrophically sick? I don't know. I look up at God and, thinking about this girl -- how badly scarred her lungs are already -- I say to Him, "What on earth are you THINKING?"

The eclipse had moved in such peculiar time. Maybe it's that I'm so used to blips and soundbites, instant deadlines, e-mail. The shadow of the earth moved slowly across the moon. It moved in celestial time, both very slowly and fleeting at the same astronomical moment. It seemed like the moon was being consumed, and it looked as if all the moons that ever were, were being consumed all at once. As if, in its last moments, you got to see the moon's whole life pass before your very eyes.

I suddenly remembered how we had spent New Year's Day out at Stinson Beach with this family. It was one of those perfect Northern California days when children and dogs are running on the beach and pelicans are flying overhead, and the mountain and the green ridges rise up behind you, and it's so golden and balmy that you inevitably commit great acts of hubris. The little girl seemed fine, happy, blonde, tireless. When she got colds, she got such terrible coughs that she sounded like a huge fat alcoholic smoker, but she was not sick on New Year's Day. Then two days later the doctor called with the girl's lab results. Now it's both hard to remember when she wasn't sick, and harder to believe she is.

She laughs at all my jokes. The night of the eclipse, I kept pointing to our dog and saying, with great concern, "Isn't that the ugliest cat you've ever seen?" and she would just lose her mind laughing. I love that in a kid.

At first, after the diagnosis, everyone was either stunned or cried a lot. These people have a tribe of really good friends and everyone wanted to help, but mostly for awhile people were immobilized by either shock or grief.

One day, though, I had a vision of the disaster being a gigantic canvas on which had been painted this exqusitely beautiful, heartbreaking picture, and we all wanted to take up a corner or stand side by side and lift it together so that the parents didn't have to carry the whole thing themselves. I saw that the parents did in fact have to carry almost the whole picture by themselves, but I also suddenly envisioned an Amish barn-raising. I saw that the people who loved them could, by showing up, build a marvelous barn of sorts around the family.

So we did. We raised a gigantic amount of money; tragedies so often require money, too. We showed up and sometimes we cleaned, we listened, some of us gave massages, some of us took care of the children, and we walked their dog and we cried and then made them laugh; we gave them a lot of privacy and we showed up and listened and let them cry and cry and cry, and then took them for hikes. We took the kids to the park. We took the mother to the movies. I took the father out for dinner one night right after the diagnosis. He was a mess. The first time the waiter came over, the father was wracked with sobs, and the second time the waiter came over, the father was laughing hysterically. "He's a little erratic, isn't he?" I smiled to the waiter, and he nodded gravely.

We all kept cooking, and walking the dog, and even when things got really bad and scary, we still showed up. And that is how we built our Amish barn. Now, eight months later, things are sometimes pretty terrible for them in a lot of ways, but at the same time, they got a miracle. It wasn't the kind that comes in on a Macy's Thanksgiving Day float. And it wasn't the one they wanted, where God would reach down from the sky and touch the baby with His magic wand and restore her to perfect health. Maybe that will still happen, who knows? I wouldn't put anything past Him, because he is one crafty mo-fo. Still, they did get a miracle, one of those dusty little red wagon miracles, and they know it.

The mother was in a wonderful mood on the night of the eclipse. We were in a state of awe. We stared up into the sky for a long long time, like millions and millions of people everywhere were doing, so you got to feel united, underneath the strange beams of light. You could tell you were in the presence of the extraordinary, peering up at the radiance beneath the veil of shadow, the intensity of that rim of light when it is struggling through its own darkness. The little girl who is sick kept clapping her hands against the sides of her face in wonder, as if she was about to exclaim, "Caramba!" Or "Oy!" When the moon was bright and gold again, she ran up the stairs after her sister and Sam, who were cold and had gone inside to play.

The mother watched them go, very calm, very focused, and I could see that these days her daughters were the wall with the donkey on it. We stood outside for awhile longer, talking about this last flare-up, how frightened she felt, how tired. And I didn't know what to say at first, watching the girl go chasing after the big kids, coughing; except that we, their friends, all know the rains and the wind will come, and they will be cold, oh God will they be cold. But then we will come too, I said; and there will be shelter.

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