“It’s all right, Mrs. O’Keefe,” Marin murmured, kneeling beside me. “Don’t worry about it.”
“Daddy, the movie’s not done,” you said.
“Yes it is.” Sean pulled the headphones off you and threw them down. “Charlotte,” he said, “let’s get the hell out of here.”
He was already striding down the hall, volcanic, as I mopped up the juice. I realized that both lawyers were staring at me, and I rocked back on my heels.
“Charlotte!” Sean’s voice rang from the waiting room.
“Um…thank you. I’m really sorry that we bothered you.” I stood up, crossing my arms, as if I were cold, or had to hold myself together. “I just…there’s one thing…” I looked up at the lawyers and took a deep breath. “What happens if we win?”
Sling me under the sea.
Pack me down in the salt and wet.
No farmer’s plow shall touch my bones.
No Hamlet hold my jaws and speak
How jokes are gone and empty is my mouth.
Long, green-eyed scavengers shall pick my eyes,
Purple fish play hide-and-seek,
And I shall be song of thunder, crash of sea,
Down on the floors of salt and wet.
Sling me…under the sea.
– CARL SANDBURG, “BONES”
Folding: a gentle process in which one mixture is added to another, using a large metal spoon or spatula.
Most of the time when you talk about folding, it involves an edge. You fold laundry, you fold notes in half. With batter, it’s different: you bring two diverse substances together, but that space between them doesn’t completely disappear-a mixture that’s been folded the right way is light, airy, the parts still getting to know each other.
It’s a combination on the cusp, as one mixture yields to the other. Think of a bad hand of poker, of an argument, of any situation where one party simply gives in.
CHOCOLATE RASPBERRY SOUFFLÉ
1 pint raspberries, pureed and strained
8 eggs, separated
4 ounces sugar
3 ounces all-purpose flour
8 ounces good-quality bittersweet chocolate, chopped
2 ounces Chambord liqueur
2 tablespoons melted butter
Sugar for dusting ramekins
Heat the raspberry puree to lukewarm in a heavy saucepan. Whisk the egg yolks with 3 ounces of sugar in large mixing bowl; whisk in the flour and raspberry puree, and return the mixture to the saucepan.
Cook over medium-low heat, stirring constantly, until the custard is thick. Do not allow it to boil. Remove from heat, and stir in the chocolate until it is completely melted. Mix in the liqueur. Cover the base mixture with plastic to prevent a skin from forming.
Meanwhile, butter six ramekins and dust with sugar. Preheat the oven to 425 degrees F.
Whip the egg whites to stiff peaks with the remaining ounce of sugar. And here is the part where you will see it-the coming together of two very different mixtures-as you fold the egg whites into the chocolate. Neither one will be willing to give up its substance: the darkness of the chocolate will become part of the foam of the egg whites, and vice versa.
Spoon the mixture into the ramekins, just 1/ 4inch shy of the rim. Bake immediately. The soufflés are done when they are well risen, golden brown on top, with edges that appear dry-about 20 minutes. But do not be surprised if, when you remove them from the oven, they sink under the weight of their own promise.
April 2007
You can’t live a life without impact. It was one of the first things doctors told us when they began explaining the catch-22 that was osteogenesis imperfecta: be active, but don’t break, because if you break, you can’t be active. The parents who kept their kids sedentary, or had them walk on their knees so that they would be less likely to fall and suffer a fracture, also ran the risk of never having their children’s muscles and joints develop enough to protect the bones.
Sean was the risk taker when it came to you. Then again, he wasn’t the one who was home most often when you had a break. But he’d spent years convincing me that a few casts was small price to pay for a real life; maybe now I could convince him that two silly words like wrongful birth meant nothing when compared to the future they might secure for you. In spite of Sean’s exit from the lawyer’s office, I kept hoping they might call me again. I fell asleep thinking about what Robert Ramirez had said. I woke up with an unfamiliar taste in my mouth, part sweet and part sour; it took me days to realize this was simply hope.
You were sitting in a hospital bed with a blanket thrown over your spica cast, reading a trivia book while we waited for your pamidronate infusion. At first, you’d come in every two months; now we only had to make biannual treks down to Boston. Pamidronate wasn’t a cure for OI, just a treatment-one that made it possible for Type IIIs like you to walk at all, instead of being wheelchair-bound. Before this, even stepping down could cause microfractures in your feet.
“You wouldn’t believe it, looking at her femur breaks, but her Z score’s much better,” Dr. Rosenblad said. “She’s at minus three.”
When you were born and had a Dexascan reading for bone density, your score was minus six. Ninety-eight percent of the population fell between plus and minus two. Bone constantly makes new bone and absorbs old bone; pamidronate slowed down the rate at which your body would absorb the bone; it allowed you to move enough to build up strength in your bones. Once, Dr. Rosenblad had explained it to me by holding up a kitchen sponge: bone was porous, the pamidronate filled in the holes a little.
You’d had over fifty fractures in five years with the treatment; I couldn’t imagine what life would have been like without it.
“I’ve got a good fact for you today, Willow,” Dr. Rosenblad said. “In a pinch, if you need a substitute for blood plasma, you can use the goop inside coconuts.”
Your eyes widened. “Have you ever done that?”
“I was thinking of trying it today…” He grinned at you. “Just joking. Got any questions for me before we get the show on the road?”
You slipped your hand into mine. “Two sticks, right?”
“That’s the rule,” I said. If a nurse couldn’t get the IV inserted in your vein in two tries, I’d make her get someone else to do it.
It’s funny-when I went out with Sean and another cop and his wife, I was the shy one. I was never the life of the party; I didn’t strike up conversations with people standing in the grocery line behind me. But put me in a hospital setting, and I would fight to the death for you. I would be your voice, until you learned to speak up for yourself. I had not always been like this-who doesn’t want to believe a doctor knows best? But there are practitioners who can go an entire career without ever running across a case of OI. The fact that people told me they knew what they were doing did not mean I would trust them.
Except Piper. I had believed her when she told me that there was no way we could have known any sooner that you would be born this way.
“I think we’re good to go,” Dr. Rosenblad said.
The treatments were four hours each, for three days in a row. After two hours of multiple nurses and residents coming in to get your vitals (honestly, did they think that your weight and height changed in the span of a half hour?), Dr. Rosenblad would be called in, and then you’d give a urine sample. After that came the blood draw-six vials while you clutched my hand so hard you left tiny half-moons with your fingernails on the canvas of my skin. Finally, the nurse would administer the IV-the part you resisted the most. As soon as I heard her footsteps in the hall, I tried to distract you by pointing out facts in your book.
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