Handle With Care (2 page)

Hey, I whispered, cradling you closer. My hand, trapped beneath you, felt the rough edge of the foam pad. I wondered how long it would be before I could carry the damp weight of you, feel your skin against mine. I thought of all the times Amelia had cried as a newborn; how I’d nurse her in bed and fall asleep with her in my embrace, always worried that I might roll over and hurt her. But with you, even lifting you out of the crib could be a danger. Even rubbing your back.

I looked up at Piper. “Maybe you should take her…”

She sank down beside me and traced a finger over the rising moon of your scalp. “Charlotte,” Piper said, “she won’t break.”

We both knew that was a lie, but before I could call her on it, Amelia streaked into the room, snow on her mittens and woolen hat. “She’s here, she’s here,” your sister sang. The day I had told her you were coming, she asked if it could be in time for lunch. When I told her she’d have to wait about five months, she decided that was too long. Instead, she pretended that you had already arrived, carrying around her favorite doll and calling her Sissy. Sometimes, when Amelia got bored or distracted, she would drop the doll on its head, and your father would laugh. Good thing that’s the practice version, he’d say.

Sean filled the doorway just as Amelia climbed onto the bed, into Piper’s lap, to pass judgment. “She’s too small to skate with me,” Amelia said. “And how come she’s dressed like a mummy?”

“Those are ribbons,” I said. “Gift wrapping.”

It was the first time I lied to protect you, and as if you knew, you chose that moment to wake up. You didn’t cry, you didn’t squirm. “What happened to her eyes?” Amelia gasped, as we all looked at the calling card for your disease: the whites of your sclera, which instead flashed a brilliant, electric blue.

In the middle of the night, the graveyard shift of nurses came on duty. You and I were fast asleep when the woman came into the room. I swam into consciousness, focusing on her uniform, her ID tag, her frizzy red hair. “Wait,” I said, as she reached for your swaddled blanket. “Be careful.”

She smiled indulgently. “Relax, Mom. I’ve only checked a diaper ten thousand times.”

But this was before I had learned to be your voice, and as she un-tucked the fold of the swaddling, she pulled too fast. You rolled to your side and started to shriek—not the whimper you’d made earlier, when you were hungry, but the shrill whistle I’d heard when you were born. “You hurt her!”

“She just doesn’t like getting up in the middle of the night—”

I could not imagine anything worse than your cries, but then your
skin turned as blue as your eyes, and your breath became a string of gasps. The nurse leaned over with her stethoscope. “What’s the matter? What’s wrong with her?” I demanded.

She frowned as she listened to your chest, and then suddenly you went limp. The nurse pressed a button behind my bed. “Code Blue,” I heard, and the tiny room was suddenly packed with people, even though it was still the middle of the night. Words flew like missiles: hypoxemic…arterial blood gas…SO2
of forty-six percent…administering FIO
2
.

“I’m starting chest compressions,” someone said.

“This one’s got OI.”

“Better to live with some fractures than die without them.”

“We need a portable chest film stat—”

“There were no breath sounds on the left side when this started—”

“No point waiting for the X-ray. There could be a tension pneumothorax—”

Between the shifting columns of their bodies, I saw the wink of a needle sinking between your ribs, and then moments later a scalpel cutting below it, the bead of blood, the clamp, the length of tubing that was fed into your chest. I watched them sew the tube into place, where it snaked out of your side.

By the time Sean arrived, wild-eyed and frantic, you had been moved to the NICU. “They cut her,” I sobbed, the only words I could manage to find, and when he pulled me into his arms, I finally let go of all the tears I’d been too terrified to cry.

“Mr. and Mrs. O’Keefe? I’m Dr. Rhodes.” A man who looked young enough to be in high school poked his head into the room, and Sean’s hand grabbed mine tightly.

“Is Willow all right?” Sean asked.

“Can we see her?”

“Soon,” the doctor said, and the knot inside me dissolved. “A chest X-ray confirmed a broken rib. She was hypoxemic for several minutes, which resulted in an expanding pneumothorax, a resultant mediastinal shift, and cardiopulmonary arrest.”

“English,” Sean roared. “For God’s sake.”

“She was without oxygen for a few minutes, Mr. O’Keefe. Her heart, trachea, and major vessels shifted to the opposite side of her body as a result of the air that filled her chest cavity. The chest tube will allow them to go back where they belong.”

“No oxygen,” Sean said, the words sticking in his throat. “You’re talking about brain damage.”

“It’s possible. We won’t know for a while.”

Sean leaned forward, his hands clasped so tight that the knuckles stood out in bright white relief. “But her heart…”

“She’s stable now—although there’s a possibility of another cardiovascular collapse. We’re just not sure how her body will react to what we’ve done to save her this time.”

I burst into tears. “I don’t want her to go through that again. I can’t let them do that to her, Sean.”

The doctor looked stricken. “You might want to consider a DNR. It’s a do not resuscitate order that’s kept in her medical file. It basically says that if something like this occurs again, you don’t want any extraordinary measures taken to revive Willow.”

I had spent the last few weeks of my pregnancy preparing myself for the worst, and as it turned out, it wasn’t anywhere close.

“Just something to think about,” the doctor said.

Maybe, Sean said, she wasn’t meant to be here with us. Maybe this is God’s will.

What about my will? I asked. I want her. I’ve wanted her all along.

He looked up at me, wounded. And you think I haven’t?

Through the window, I could see the slope of the hospital lawn, covered with dazzling snow. It was a knife-bright, blinding day; you never would have guessed that hours before there had been a raging blizzard. An enterprising father, trying to occupy his son, had taken a cafeteria tray outside. The boy was careening down the hill, whooping as a spray of snow arced out behind him. He stood up and waved toward the hospital, where someone must have been looking out from a window just like mine. I wondered if his mother was in the hospital, having another baby. If she was next door, even now, watching her son sled.

My daughter, I thought absently, will never be able to do that.

Piper held my hand tightly as we stared down at you in the NICU. The chest tube was still snaking out from between your battered ribs; bandages wrapped your arms and legs tight. I swayed a little on my feet. “Are you okay?” Piper asked.

“I’m not the one you need to worry about.” I looked up at her. “They asked if we wanted to sign a DNR.”

Piper’s eyes widened. “Who asked that?”

“Dr. Rhodes—”

“He’s a resident,” she said, as distastefully as if she’d said “He’s a Nazi.” “He doesn’t know the way to the cafeteria yet, much less the protocol for talking to a mother who’s just watched her baby suffer a full cardiac arrest in front of her eyes. No pediatrician would recommend a newborn be DNR before there was brain testing that proved irreversible damage—”

“They cut her open in front of me,” I said, my voice quivering. “I heard her ribs break when they tried to start her heart again.”

“Charlotte—”

“Would you sign one?”

When she didn’t answer, I walked to the other side of the bassinet, so that you were caught between us like a secret. “Is this what the rest of my life is going to be like?”

For a long time, Piper didn’t respond. We listened to the symphony of whirs and beeps that surrounded you. I watched you startle, your tiny toes curling up, your arms open wide. “Not the rest of your life,” Piper said. “Willow’s.”

Later that day, with Piper’s words ringing in my ears, I signed the do not resuscitate order. It was a plea for mercy in black and white, until you read between the lines: here was the first time I lied, and said that I wished you’d never been born.

Most things break, including hearts. The lessons of life amount not to wisdom, but to scar tissue and callus.

-WALLACE STEGNER, THE SPECTATOR BIRD

Tempering:
to heat slowly and gradually.

Most of the time when we talk about a temper, we mean a quickness to anger. In cooking, though, tempering is about making something stronger by taking your time. You temper eggs by adding a hot liquid in small increments. The idea is to raise their temperature without causing them to curdle. The result is a stirred custard that can be used as a dessert sauce or incorporated into a complex dessert.

Here’s something interesting: the consistency of the finished product has nothing to do with the type of liquid used to heat it. The more eggs you use, the thicker and richer the final product will be.

Or in other words, it’s the substance you’ve got when you start that determines the outcome.

CRÈME PATISSERIE

2 cups whole milk

6 egg yolks at room temperature

5 ounces sugar

1½ ounces cornstarch

1 teaspoon vanilla

Bring the milk just to a boil in a nonreactive saucepan. In a stainless steel bowl, whisk the egg yolks, sugar, and cornstarch. Temper the yolk mixture with milk. Put the milk and yolk mixture back on the heat, whisking constantly. When the mixture starts to thicken, whisk faster until it boils, then remove from heat. Add vanilla and pour into a stainless steel bowl. Sprinkle with a bit of sugar, and place plastic wrap directly on top of the crème. Put in fridge and chill before serving. This can be used as a filling for fruit tarts, napoleons, cream puffs, éclairs, et cetera.

Amelia

February 2007

My whole life, I’ve never been on a vacation. I’ve never even left New Hampshire, unless you count the time that I went with you and Mom to Nebraska—and even you have to admit that sitting in a hospital room for three days watching really old Tom and Jerry cartoons while you got tested at Shriners was nothing like going to a beach or to the Grand Canyon. So you can imagine how excited I was when I found out that our family was planning to go to Disney World. We would go during February school vacation. We’d stay at a hotel that had a monorail running right through the middle of it.

Mom began to make a list of the rides we would go on. It’s a Small World, Dumbo the Flying Elephant, Peter Pan’s Flight.

“Those are for babies,” I complained.

“Those are the ones that are safe,” she said.

“Space Mountain,” I suggested.

“Pirates of the Caribbean,” she answered.

“Great,” I yelled. “I get to go on the first vacation of my life, and I won’t even have any fun.” Then I stormed off to our room, and even though I wasn’t downstairs anymore, I could pretty much imagine what our parents were saying: There Amelia goes, being difficult again.

It’s funny, when things like this happen (which is, like, always), Mom isn’t the one who tries to iron out the mess. She’s too busy making sure you’re all right, so the task falls to Dad. Ah, see, there’s something else that I’m jealous about: he’s your real dad, but he’s only my stepfather. I don’t know my real dad; he and my mother split up before I was even
born, and she swears that his absence is the best gift he could ever have given me. But Sean adopted me, and he acts like he loves me just as much as he loves you—even though there’s this black, jagged splinter in my mind that constantly reminds me this couldn’t possibly be true.

“Meel,” he said when he came into my room (he’s the only one I’d ever let call me that in a million years; it makes me think of the worms that get into flour and ruin it, but not when Dad says it), “I know you’re ready for the big rides. But we’re trying to make sure that Willow has a good time, too.”

Because when Willow’s having a good time, we’re all having a good time. He didn’t have to say it, but I heard it all the same.

“We just want to be a family on vacation,” he said.

I hesitated. “The teacup ride,” I heard myself say.

Dad said he’d go to bat for me, and even though Mom was dead set against it—what if you smacked up against the thick plaster wall of the teacup?—he convinced her that we could whirl around in circles with you wedged between us so that you wouldn’t get hurt. Then he grinned at me, so proud of himself for having negotiated this deal that I didn’t have the heart to tell him I really couldn’t care less about the teacup ride.

The reason it had popped into my head was because, a few years ago, I’d seen a commercial for Disney World on TV. It showed Tinker Bell floating like a mosquito through the Magic Kingdom over the heads of the cheery visitors. There was one family that had two daughters, the same age as you and me, and they were on the Mad Hatter’s teacup ride. I couldn’t take my eyes off them—the older daughter even had brown hair, like I do; and if you squinted, the father looked a lot like Dad. The family seemed so happy it made my stomach hurt to watch it. I knew that the people on the commercial probably weren’t even a real family—that the mom and dad were probably two single actors, that they had most likely met their fake daughters that very morning as they arrived on set to shoot the commercial—but I wanted them to be one. I wanted to believe they were laughing, smiling, even as they were spinning out of control.

Pick ten strangers and stick them in a room, and ask them which one of us they feel sorrier for—you or me—and we all know who they’ll
choose. It’s kind of hard to look past your casts; and the fact that you’re the size of a two-year-old, even though you’re five; and the funny twitch of your hips when you’re healthy enough to walk. I’m not saying that you’ve had it easy. It’s just that I have it worse, because every time I think my life sucks, I look at you and hate myself even more for thinking my life sucks in the first place.

Here’s a snapshot of what it’s like to be me:

Amelia, don’t jump on the bed, you’ll hurt Willow.

Amelia, how many times have I told you not to leave your socks on the floor, because Willow could trip over them?

Amelia, turn off the TV (although I’ve only watched a half hour, and you’ve been staring at it like a zombie for five hours straight).

I know how selfish this makes me sound, but then again, knowing something’s true doesn’t keep you from feeling it. And I may only be twelve, but believe me, that’s long enough to know that our family isn’t the same as other families, and never will be. Case in point: What family packs a whole extra suitcase full of Ace bandages and waterproof casts, just in case? What mom spends days researching the hospitals in Orlando?

It was the day we were leaving, and as Dad loaded up the car, you and I sat at the kitchen table, playing Rock Paper Scissors. “Shoot,” I said, and we both threw scissors. I should have known better; you always threw scissors. “Shoot,” I said again, and this time I threw rock. “Rock breaks scissors,” I said, bumping my fist on top of your hand.

“Careful,” Mom said, even though she was facing in the opposite direction.

“I win.”

“You always win.”

I laughed at you. “That’s because you always throw scissors.”

“Leonardo da Vinci invented the scissors,” you said. You were, in general, full of information no one else knew or cared about, because you read all the time, or surfed the Net, or listened to shows on the History Channel that put me to sleep. It freaked people out, to come across a five-year-old who knew that toilets flush in the key of E-flat or that the oldest word in the English language is town, but Mom said that lots of kids with OI were early readers with advanced verbal skills. I figured it was like a muscle: your brain got used more than the rest of your body, which was always breaking down; no wonder you sounded like a little Einstein.

“Do I have everything?” Mom asked, but she was talking to herself. For the bazillionth time she ran through a checklist. “The letter,” she said, and then she turned to me. “Amelia, we need the doctor’s note.”

It was a letter from Dr. Rosenblad, saying the obvious: that you had OI, that you were treated by him at Children’s Hospital—in case of emergency, which was actually pretty amusing since your breaks were one emergency after another. It was in the glove compartment of the van, next to the registration and the owner’s manual from Toyota, plus a torn map of Massachusetts, a Jiffy Lube receipt, and a piece of gum that had lost its wrapper and grown furry. I’d done the inventory once when my mother was paying for gas.

“If it’s in the van, why can’t you just get it when we drive to the airport?”

“Because I’ll forget,” Mom said as Dad walked in.

“We’re locked and loaded,” he said. “What do you say, Willow? Should we go visit Mickey?”

You gave him a huge grin, as if Mickey Mouse was real and not just some teenage girl wearing a big plastic head for her summer job. “Mickey Mouse’s birthday is November eighteenth,” you announced as he helped you crawl down from the chair. “Amelia beat me at Rock Paper Scissors.”

“That’s because you always throw scissors,” Dad said.

Mom frowned over her list one last time. “Sean, did you pack the Motrin?”

“Two bottles.”

“And the camera?”

“Shoot, I took it out and left it on the dresser upstairs—” He turned to me. “Sweetie, can you grab it while I put Willow in the car?”

I nodded and ran upstairs. When I came down, camera in hand, Mom was standing alone in the kitchen turning in a slow circle, as if she didn’t know what to do without Willow by her side. She shut off the lights and locked the front door, and I bounded over to the van. I handed the camera to Dad and buckled myself in beside your car seat, and let myself admit that, as dorky as it was to be twelve years old and excited about Disney World, I was. I was thinking about sunshine and Disney songs and monorails, and not at all about the letter from Dr. Rosenblad.

Which means that everything that happened was my fault.

We didn’t even make it to the stupid teacups. By the time our flight landed and we got to the hotel, it was late afternoon. We drove to the theme park and had just walked onto Main Street, U.S.A.—Cinderella’s Castle in full view—when the perfect storm hit. You said you were hungry, and we turned into an old-time ice-cream parlor. Dad stood in line holding your hand while Mom brought napkins over to the table where I was sitting. “Look,” I said, pointing out Goofy pumping the hand of a screaming toddler. At exactly the same moment that Mom let one napkin flutter to the ground and Dad let go of your hand to take out his wallet, you hurried to the window to see what I wanted to show you, and you slipped on the tiny paper square.

We all watched it in slow motion, the way your legs simply gave out from underneath you, so that you sat down hard on your bottom. You looked up at us, and the whites of your eyes flashed blue, the way they always do when you break.

It was almost like the people at Disney World had been expecting this to happen. No sooner had Mom told the man scooping ice cream that you’d broken your leg than two men from their medical facility came with a stretcher. With Mom giving orders, the way she always does around doctors, they managed to get you onto it. You weren’t crying, but then, you hardly ever did when you broke something. Once, I had fractured my pinkie playing tetherball at school and I couldn’t stop freaking out when it turned bright red and blew up like a balloon, but you didn’t even cry the time you broke your arm right through the skin.

“Doesn’t it hurt?” I whispered, as they lifted up the stretcher so that it suddenly grew wheels.

You were biting your lower lip, and you nodded.

There was an ambulance waiting for us when we got to the Disney World gate. I took one last look at Main Street, U.S.A., at the top of the metal cone that housed Space Mountain, at the kids who were running in instead of going out, and then I crawled into the car that someone had arranged so Dad and I could follow you and Mom to the hospital.

It was weird, going to an emergency room that wasn’t our usual one. Everyone at our local hospital knew you, and the doctors all listened to what Mom told them. Here, though, nobody was paying any attention to
her. They said this could be not one but two femur fractures, and that might mean internal bleeding. Mom went into the examination room with you for the X-ray, which left Dad and me sitting on green plastic chairs in a waiting room. “I’m sorry, Meel,” he said, and I just shrugged. “Maybe it’ll be an easy one, and we can go back to the park tomorrow.” There had been a man in a black suit at Disney World who told my father that we would be comped, whatever that meant, if we wanted to return another day.

It was Saturday night, and the people coming into the emergency room were much more interesting than the TV program that was playing. There were two kids who looked like they were old enough to be in college, both bleeding from the same spot on their foreheads and laughing every time they looked at each other. There was an old man wearing sequined pants and holding the right side of his stomach, and a girl who spoke only Spanish and was carrying screaming twin babies.

Suddenly, Mom burst out of the double doors to the right, with a nurse running after her and another woman in a skinny pin-striped skirt and red high heels. “The letter,” she cried. “Sean, what did you do with it?”

“What letter?” Dad asked, but I already knew what she was talking about, and just like that, I thought I might throw up.

“Mrs. O’Keefe,” the woman said, “please. Let’s do this somewhere more private.”

She touched Mom’s arm, and—well, the only way I can really describe it is that Mom just folded in half. We were led to a room with a tattered red couch and a little oval table and fake flowers in a vase. There was a picture on the wall of two pandas, and I stared at it while the woman in the skinny skirt—she said her name was Donna Roman, and she was from the Department of Children and Families—talked to our parents. “Dr. Rice contacted us because he has some concerns about the injuries to Willow,” she said. “Bowing in her arm and X-rays indicate that this wasn’t her first break?”

“Willow’s got osteogenesis imperfecta,” Dad said.