Barn Raising

"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 Olivia had been diagnosed nine months earlier with cystic fibrosis. Now, out of the blue, the family has been plunged into an alternate 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 and that they are now citizens of the Land of the F*#@ed. They must live with the fact that their younger daugher has this disease that fills its victims' lungs with thick sludge that harbors infections. Two-week hospital stays for nonstop IV antibiotics are common. Adulthood is rare.

Watching Olivia watch the eclipse of the moon, I suddenly remembered New Year's Day, seven months ago, out at Stinson Beach with Sam and Olivia and her family. It was one of those perfect northern California days when dozens of 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. Olivia seemed fine- happy, blonde, tireless. Just a few days before, her parents had taken her to the doctor for lab work, because her colds were always so severe. But she didn't have a cold on New Year's Day.
Then two days later he called with the news that she had cystic fibrosis. Now, seeing her the night of the eclipse, her upward gaze of pure child wonder, I find it both hard to remember when she wasn't sick and harder to believe she is.

At first, after the diagnosis, we were almost too stunned to cry. Olivia's family has a tribe of good friends around them, and everyone wanted to help, but at first people didn't know what to do; they were immobilized by shock and sadness.
By mid January, though, I had a vision of the disaster as a gigantic canvas on which had been painted an exquisitely beautiful picture. We all wanted to take up a corner or stand side by side and lift it together so that Olivia's parents didn't have to carry the whole thing themselves. But I saw that they did in fact have to carry almost the whole heartbreaking picture alone. Then the image of a canvas changed into one wall of a barn, and I saw that the people who loved them could build a marvelous barn of sorts around the family.
So we did. We raised a lot of money; catastrophes can be expensive. We showed up. Sometimes we cleaned, we listened, some of us took care of the children, we walked their dog, and we criend and then made them laugh; we gave them a lot of privacy, then we showed up and listened and let them cry and cry and cry, and then took them for hikes.
We kept on cooking and walking the dog, taking the kids to the park, cleaning the kitchen and letting Sara and Adam hate what was going on when they needed to. Sometimes we let them resist finding any meaning or solace in anything that had to do with their daughter's diagnosis, and this was one of the hardest things to do- to stop trying to make things come out better than they were. We let them spew when they needed to; we offered the gift of no comfort when there being no comfort was where they had landed. Then we shopped for groceries. One friend gave them weekly massages, everyone gave lots of money. 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 on they wanted, where God would rach down from the sky and touch their girl with a magic wand and restore her to perfect health. Maybe that will still happen- who knows? I wouldn't put anyting past God, because he or she is one crafty mother. Still, they did get a miracle, one of those dusty little red-wagon miracles, and they understand this.
(That night, the night of the eclipse) We stood outside for a while longer, talking out this last flare-up, how frightened Sara had felt, how tired. And I didn't know what to say at first, watching Olivia go chasing after the big kids, coughing. Except that we, their friends, all know that 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; we will have been building this barn all along, and so there will always be shelter."

I wept when I read this chapter from Anne Lamott's book, Traveling Mercies. Her incredible gift of writing resonated so deeply within me. She is writing exactly how I feel when I think of the loving shelter our friends and family are giving us through these last months. Oh, that I was that gifted to be able to articulate the feelings swirling in me. I know that JRA is not life threatening. I know this. But everything has tipped and shifted and my feet haven't quite landed in a spot where I know what to expect.
So I want to say thank you, dear ones, for holding me up when my legs and my spirit give out. Thank you for extending grace when I totally flop as a person. My world has shrunk and swollen and blurred and the constant, the saving force, has been the mercy extended and love shown.