Handle With Care (8 page)

“Forty thousand people get hurt by toilets every year,” you said.

I gritted my teeth. “For God’s sake, Willow, just concentrate before you make it forty thousand and one.”

“Okay, I’m done.”

With another balancing act, I passed you the roll of toilet tissue and let you reach between your legs. “Good work,” I said, leaning down to flush and then gingerly backing out of the narrow bathroom door. But my sneaker caught on the edge of the rug, and I felt myself going down. I twisted so that I’d land first, so that my body would cushion your blow.

I’m not sure which of us started to laugh first, and when the doorbell and phone rang simultaneously, we started to laugh even harder. Maybe I would change my message. Sorry, I can’t come to the phone right now. I’m holding my daughter, in her fifty-pound cast, over the toilet bowl.

I levered myself on my elbows, pulling you upright with me. The doorbell rang again, impatient. “Coming,” I called out.

“Mommy!” you screeched. “My pants!”

You were still half naked after our bathroom run, and getting you into your flannel pajama bottoms would be another ten-minute endeavor. Instead, I grabbed one of the trash bags still tucked into your cast and wrapped it around you like a black plastic skirt.

On the front porch stood Mrs. Dumbroski, one of the neighbors who lived down the road. She had twin grandsons your age, who had visited last year, stolen her glasses when she fell asleep, and set a pile of raked leaves on fire that would have spread to her garage if the mailman
hadn’t come by at just the right moment. “Hello, dear,” Mrs. Dumbroski said. “I hope this isn’t a bad time.”

“Oh no,” I answered. “We were just…” I looked at you, wearing the trash bag, and we both started to laugh again.

“I was looking for my dish,” Mrs. Dumbroski said.

“Your dish?”

“The one I baked the lasagna in. I do hope you’ve had a chance to enjoy it.”

It must have been one of the meals that had been waiting for us on our return home from the hell that was Disney World. To be honest, we’d eaten only a few; the rest were getting freezer burn even as I stood there. There was only so much mac and cheese and lasagna and baked ziti that a human could stomach.

It seemed to me that if you made a meal for someone who was sick, it was pretty cheeky to ask whether or not she’d finished it so you could have your Pyrex back.

“How about I try to find the dish, Mrs. Dumbroski, and have Sean drop it off at your house later?”

Her lips pursed. “Well,” she said, “then I suppose I’ll have to wait to make my tuna casserole.”

For just a moment I entertained the thought of stuffing you into Mrs. Dumbroski’s chicken-wing arms and watching her totter under the weight of you while I went to the freezer, found her stupid lasagna, and threw it onto the ground at her feet—but instead I just smiled. “Thanks for being so accommodating. I’ve got to get Willow down for a nap now,” I said, and I closed the door.

“I don’t take naps,” you said.

“I know. I just said that to make her leave, so I wouldn’t kill her.” I twirled you into the living room and positioned a legion of pillows behind your back and under your knees, so that you could sit comfortably. Then I reached for your pajama bottoms and leaned over to tap the blinking button on the answering machine. “Left leg first,” I said, sliding the wide waistband over your cast.

You have one new message.

I slipped your right leg into the pants and shimmied them over the plaster at your hips.

Mr. and Mrs. O’Keefe…this is Marin Gates from the Law Offices of Robert Ramirez. We’ve got something we’d like to discuss with you.

“Mom,” you whined as my hands stilled at your waist.

I gathered the extra fabric into a knot. “Yes,” I said, my heart racing. “Almost done.”

This time, Amelia was in school, but we still had to bring Willow to the lawyer’s office. And this time, they were ready: beside the coffee machine were juice packs; next to the glossy architectural magazines was a small stack of picture books. When the secretary brought us back to meet the lawyers, we were not led to the conference room. Instead she opened the door to an office that was a hundred different shades of white: from the pickled wood floor to the creamy wall paneling to the pair of pale leather sofas. You craned your neck, taking this all in. Was it supposed to look like heaven? And if so, what did that make Robert Ramirez?

“I thought the couch might be more comfortable for Willow,” he said smoothly. “And I also thought she might like to watch a movie instead of listening to the grown-ups talk about all this boring stuff.” He held up the DVD of Ratatouille—your favorite, although he couldn’t have known that. After we’d watched it for the first time, we’d cooked the real deal for dinner.

Marin Gates brought over a portable DVD player and a very swanky pair of Bose headphones. She plugged it in, settled you on the couch, turned on the DVD, and popped the straw into a juice pack.

“Sergeant O’Keefe, Mrs. O’Keefe,” Ramirez said. “We thought it would be better to discuss this without Willow in the room, but we also realized that might be a physical impossibility given her condition. Marin’s the one who came up with the idea of the DVD. She’s also been doing a great deal of work these past two weeks. We reviewed your medical records, and we gave them to someone else to review. Does the name Marcus Cavendish ring a bell?”

Sean and I looked at each other and shook our heads.

“Dr. Cavendish is Scottish. He’s one of the foremost experts on osteogenesis imperfecta in the world. And according to him, it appears that you have a good cause of action of medical malpractice against your obstetrician. You remembered your eighteen-week ultrasound being too clear, Mrs. O’Keefe…That’s significant evidence that your obstetrician missed. She should have been able to recognize your baby’s condition
then, long before broken bones were visible at the later ultrasound. And she should have presented that information to you at a time in your pregnancy…that might have allowed you to change the outcome.”

My head was spinning, and Sean looked utterly confused. “Wait a second,” he said. “What kind of lawsuit is this?”

Ramirez glanced at you. “It’s called wrongful birth,” he said.

“And what the hell does that mean?”

The lawyer glanced at Marin Gates, who cleared her throat. “A wrongful birth lawsuit entitles the parents to sue for damages incurred from the birth and care of a severely disabled child,” she said. “The implication is that if your provider had told you earlier on that your baby was going to be impaired, you would have had choices and options as to whether or not to continue with the pregnancy.”

I remembered snapping at Piper weeks ago: Do you always have to be so damn perfect?

What if the one time she hadn’t been perfect was when it came to you?

I was as rooted to my seat as you were; I couldn’t move, couldn’t breathe. Sean spoke for me: “You’re saying my daughter never should have been born?” he accused. “That she was a mistake? I’m not listening to this bullshit.”

I glanced at you: you had taken off your headphones and were hanging on every word.

As your father stood up, so did Robert Ramirez. “Sergeant O’Keefe, I know how horrible it sounds. But the term wrongful birth is just a legal one. We don’t wish your child wasn’t born—she’s absolutely beautiful. We just think that, when a doctor doesn’t meet the standard of care a patient deserves, someone ought to be held responsible.” He took a step forward. “It’s medical malpractice. Think of all the time and money that’s gone into taking care of Willow—and will go into taking care of her in the future. Why should you pay for someone else’s mistake?”

Sean towered over the lawyer, and for a second, I thought he might swat Ramirez out of his way. But instead he jabbed one finger into the lawyer’s chest. “I love my daughter,” Sean said, his voice thick. “I love her.”

He pulled you into his arms, yanking the headphone jack out so that the DVD player overturned, knocking over the juice box onto the
leather couch. “Oh,” I cried, digging in my purse for a tissue to blot the stain. That gorgeous, creamy leather; it would be ruined.

“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 1/4 inch 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.

Charlotte

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.

Flamingo tongues were eaten in ancient Rome as a delicacy.

In Kentucky, it’s illegal to carry ice cream in your back pocket.

“Hey, sugar,” the nurse said. She had a cloud of unnaturally yellow hair and wore a stethoscope with a monkey clipped to the side of it. She was carrying a small plastic tray with an IV needle, alcohol wipes, and two strips of white tape.

“Needles suck,” you said.

“Willow! Watch your language!”

“But suck isn’t a swear word. Vacuums suck.”

“Especially if you’re the one doing the housecleaning,” the nurse murmured, swabbing your arm. “Now, Willow, I’m going to count to three before I stick you. Ready? One…two!”

“Three,” you yelped. “You lied!”

“Sometimes it’s easier to not be expecting it,” the nurse said, but she was lifting the needle again. “That wasn’t a good one. Let’s give it another try—”

“No,” I interrupted. “Is there another nurse on the floor who can do this?”

“I’ve been putting in IVs for thirteen years—”

“But not in my daughter.”

Her face frosted over. “I’ll get my supervisor.”

She closed the door behind us. “But that was only the first stick,” you said.

I sank down beside you on the bed. “She was sneaky. I’m not taking any chances.”

Your fingers ruffled the pages of your book, as if you were reading Braille. One factoid jumped out at me: The safest year of life, statistically, is age ten.

You were halfway there.

The nice part about your being kept overnight in the hospital was that I didn’t have to worry whether you’d wind up there, courtesy of a slip in the tub or an arm hooked on the sleeve of your jacket. As soon as they
had finished the first infusion and flushed the IV and you were sleeping deeply, I crept out of the darkened room and went to the bank of pay phones near the elevators so that I could call home.

“How is she?” Sean asked as soon as he picked up the phone.

“Bored. Fidgety. The usual. How’s Amelia?”

“She got an A on her math quiz and threw a fit when I told her she had to wash the dishes after dinner.”

I smiled. “The usual,” I repeated.

“Guess what we had for dinner?” Sean said. “Chicken cordon bleu, roasted potatoes, and stir-fried green beans.”

“Yeah, right,” I said. “You can’t even boil an egg.”

“I didn’t say I cooked. The take-out counter at the grocery store was just particularly well stocked tonight.”

“Well, Willow and I had a culinary feast of tapioca pudding, chicken noodle soup, and red Jell-O.”

“I want to call her before I go to work tomorrow. What time will she get up?”

“Six, for the nurses’ shift change,” I said.

“I’ll set my alarm,” Sean answered.

“By the way, Dr. Rosenblad asked me about doing the surgery again.”

This was—no pun intended—a bone of contention for Sean and me. Your orthopedic surgeon wanted to rod your femurs after you were out of your spica cast, so that, even if there were future breaks, they wouldn’t displace. Rodding also prevented bowing, since OI bone grows spirally. As Dr. Rosenblad said, it was the best way to manage OI, since you can’t cure OI. But although I was gung ho about doing anything and everything that might save you some pain in the future, Sean looked at the here and now—and the fact that a surgery meant you’d be incapacitated once again. I could practically hear him digging in his heels. “Didn’t you print out some article about how rodding stunts growth in OI kids—”

“You’re thinking of the spinal rods,” I said. “Once they put them in to combat the scoliosis, Willow won’t get any taller. This is different. Dr. Rosenblad even said the rods have gotten so sophisticated, they’ll grow with her—they telescope out.”

“What if she doesn’t have any more femur breaks? Then she’s having the surgery for nothing.”

The chances of you not having another leg break were about as good
as those of the sun not rising tomorrow morning. That was the other difference between Sean and me—I was the resident pessimist. “Do you really want to have to deal with another spica cast? If she winds up in one when she’s seven or ten or twelve, who’s going to be able to lift her then?”

Sean sighed. “She’s a kid, Charlotte. Shouldn’t she be able to run around for a while before you take that away again?”

“I’m not taking anything away,” I said, stung. “The fact is, she’s going to fall. The fact is, she’s going to break. Don’t cast me as the villain, Sean, just because I’m trying to help her in the long run.”

There was a hesitation. “I know how hard it is,” he said. “I know how much you do for her.”

It was as close as he could come to alluding to the disastrous visit in the lawyer’s office. “I wasn’t complaining—”

“I never said you were. I’m just saying…we knew it wouldn’t be easy, right?”

Yes, we’d known that. But I guess I also hadn’t realized it would ever be quite this hard. “I have to go,” I said, and when Sean said he loved me, I pretended I had not heard.

I hung up and immediately dialed Piper. “What’s wrong with men?” I asked.

In the background, I could hear the water running, dishes clattering in the sink. “Is that a rhetorical question?” she said.

“Sean doesn’t want Willow to have rodding surgery.”

“Hang on. Aren’t you in Boston for pamidronate?”

“Yes, and Rosenblad brought it up today when we saw him,” I said. “He’s been urging us to do it for a year now, and Sean keeps putting it off, and Willow keeps breaking.”

“Even though she’ll be better off in the long run?”

“Even though.”

“Well,” Piper said, “then I have one word for you: Lysistrata.”

I burst out laughing. “I’ve been sleeping with Willow on the living room couch for the past month. If I told Sean I was going to stop having sex with him, it would be a pretty empty threat.”

“There’s your answer, then,” Piper said. “Bring on the candles, oysters, negligee, the whole nine yards…and when he’s blissed out in a hedonistic coma, ask him again.” I heard a voice in the background. “Rob says that’ll work like a charm.”

“Thank him for the vote of confidence.”

“Hey, by the way, tell Willow that a person’s thumb is as long as his nose.”

“Really?” I wedged my hand up to my face to check. “She’ll love that.”

“Oh, shoot, that’s my call waiting. Why can’t babies get born at nine in the morning?”

“Is that a rhetorical question?” I said.

“And we come full circle. Talk to you tomorrow, Char.”

After I hung up, I stared at the receiver for a long moment. She’ll be better off in the long run, Piper had said.

Did she believe that, unconditionally? Not just about a rodding surgery but about any action that a good mother would undertake?

I didn’t know if I could even muster the courage to sue for wrongful birth. Saying abstractly that there were some children who shouldn’t be born was hard enough, but this went one step further. This meant saying one particular child—my child—shouldn’t have been born. What kind of mother would face a judge and a jury, and announce that she wished her child had never existed?

Either the kind of mother who didn’t love her daughter at all…or the kind of mother who loved her daughter too much. The kind of mother who would say anything and everything if it meant you’d have a better life.