Every expectant parent will tell you that they don’t want a perfect baby, just a healthy one. Charlotte and Sean O’Keefe would have asked for a healthy baby, too, if they’d been given the choice. Instead, their lives are made up of sleepless nights, mounting bills, the pitying stares of “luckier” parents, and maybe worst of all, the what-ifs. What if their child had been born healthy? But it’s all worth it because Willow is, funny as it seems, perfect. She’s smart as a whip, on her way to being as pretty as her mother, kind, brave, and for a five-year-old an unexpectedly deep source of wisdom. Willow is Willow, in sickness and in health.
Everything changes, though, after a series of events forces Charlotte and her husband to confront the most serious what-ifs of all. What if Charlotte had known earlier of Willow’s illness? What if things could have been different? What if their beloved Willow had never been born? To do Willow justice, Charlotte must ask herself these questions and one more. What constitutes a valuable life?
Emotionally riveting and profoundly moving, Handle with Care is an unforgettable novel about the fragility of life and the lengths we will go to protect it.
About the Author
Hometown:Hanover, New Hampshire
Date of Birth:May 19, 1966
Place of Birth:Nesconset, Long Island, NY
Education:A.B. in Creative Writing, Princeton University; M.A. in Education, Harvard University
Read an Excerpt
Handle with Care PROLOGUE
February 14, 2002
Things break all the time. Glass, and dishes, and fingernails. Cars and contracts and potato chips. You can break a record, a horse, a dollar. You can break the ice. There are coffee breaks and lunch breaks and prison breaks. Day breaks, waves break, voices break. Chains can be broken. So can silence, and fever.
For the last two months of my pregnancy, I made lists of these things, in the hopes that it would make your birth easier.
On the night before you were born, I sat up in bed with something to add to my list. I rummaged in my nightstand for a pencil and paper, but Sean put his warm hand on my leg. Charlotte? he asked. Is everything okay?
Before I could answer, he pulled me into his arms, flush against him, and I fell asleep feeling safe, forgetting to write down what I had dreamed.
It wasn’t until weeks later, when you were here, that I remembered what had awakened me that night: fault lines. These are the places where the earth breaks apart. These are the spots where earthquakes originate, where volcanoes are born. Or in other words: the world is crumbling under us; it’s the solid ground beneath our feet that’s an illusion.
• • •
You arrived during a storm that nobody had predicted. A nor’easter, the weathermen said later, a blizzard that was supposed to blow north into Canada instead of working its way into a frenzy and battering the coast of New England. The news broadcasts tossed aside their features on high school sweethearts who met up again in a nursing home and got remarried, on the celebrated history behind the candy heart, and instead began to run constant weather bulletins about the strength of the storm and the communities where ice had knocked out the power. Amelia was sitting at the kitchen table, cutting folded paper into valentines as I watched the snow blow in six-foot drifts against the glass slider. The television showed footage of cars sliding off the roads.
I squinted at the screen, at the flashing blues of the police cruiser that had pulled in behind the overturned vehicle, trying to see whether the officer in the driver’s seat was Sean.
A sharp rap on the slider made me jump. “Mommy!” Amelia cried, startled, too.
I turned just in time to see a volley of hail strike a second time, creating a crack in the plate glass no bigger than my fingernail. As we watched, it spread into a web of splintered glass as big as my fist. “Daddy will fix it later,” I said.
That was the moment when my water broke.
Amelia glanced down between my feet. “You had an accident.”
I waddled to the phone, and when Sean didn’t answer his cell, I called Dispatch. “This is Sean O’Keefe’s wife,” I said. “I’m in labor.” The dispatcher said that he could send out an ambulance, but that it would probably take a while—they were maxed out with motor vehicle accidents.
“That’s okay,” I said, remembering the long labor I’d had with your sister. “I’ve probably got a while.”
Suddenly I doubled over with a contraction so strong that the phone fell out of my hand. I saw Amelia watching, her eyes wide. “I’m fine,” I lied, smiling until my cheeks hurt. “The phone slipped.” I reached for the receiver, and this time I called Piper, whom I trusted more than anyone in the world to rescue me.
“You can’t be in labor,” she said, even though she knew better—she was not only my best friend but also my initial obstetrician. “The C-section’s scheduled for Monday.”
“I don’t think the baby got the memo,” I gasped, and I gritted my teeth against another contraction.
She didn’t say what we were both thinking: that I could not have you naturally. “Where’s Sean?”
“I . . . don’t . . . kno—oh, Piper!”
“Breathe,” Piper said automatically, and I started to pant, ha-ha-hee-hee, the way she’d taught me. “I’ll call Gianna and tell her we’re on our way.”
Gianna was Dr. Del Sol, the maternal-fetal-medicine OB who had stepped in just eight weeks ago at Piper’s request. “We?”
“Were you planning on driving yourself?”
Fifteen minutes later, I had bribed away your sister’s questions by settling her on the couch and turning on Blue’s Clues. I sat next to her, wearing your father’s winter coat, the only one that fit me now.
The first time I had gone into labor, I’d had a bag packed and waiting at the door. I’d had a birthing plan and a mix tape of music to play in the delivery room. I knew it would hurt, but the reward was this incredible prize: the child I’d waited months to meet. The first time I had gone into labor, I’d been so excited.
This time, I was petrified. You were safer inside me than you would be once you were out.
Just then the door burst open and Piper filled all the space with her assured voice and her bright pink parka. Her husband, Rob, trailed behind, carrying Emma, who was carrying a snowball. “Blue’s Clues?” he said, settling down next to your sister. “You know, that’s my absolute favorite show . . . after Jerry Springer.”
Amelia. I hadn’t even thought about who would watch her while I was at the hospital having you.
“How far apart?” Piper asked.
My contractions were coming every seven minutes. As another one rolled over me like a riptide, I grabbed the arm of the couch and counted to twenty. I focused on that crack in the glass door.
Trails of frost spiraled outward from its point of origin. It was beautiful and terrifying all at once.
Piper sat down beside me and held my hand. “Charlotte, it’s going to be okay,” she promised, and because I was a fool, I believed her.
• • •
The emergency room was thick with people who’d been injured in motor vehicle accidents during the storm. Young men held bloody towels to their scalps; children mewed on stretchers. I was whisked past them all by Piper, up to the birthing center, where Dr. Del Sol was already pacing the corridor. Within ten minutes, I was being given an epidural and wheeled to the operating room for a C-section.
I played games with myself: if there are an even number of fluorescent lights on the ceiling of this corridor, then Sean will arrive in time. If there are more men than women in the elevator, everything the doctors told me will turn out to be a mistake. Without me even having to ask, Piper had put on scrubs, so that she could fill in for Sean as my labor coach. “He’ll be here,” she said, looking down at me.
The operating room was clinical, metallic. A nurse with green eyes—that was all I could see above her mask and below her cap—lifted my gown and swabbed my belly with Betadine. I started to panic as they hung the sterile drape in place. What if I didn’t have enough anesthesia running through the lower half of my body and I felt the scalpel slicing me? What if, in spite of all I’d hoped for, you were born and did not survive?
Suddenly the door flew open. Sean blew into the room on a cold streak of winter, holding a mask up to his face, his scrub shirt haphazardly tucked in. “Wait,” he cried. He came to the head of the stretcher and touched my cheek. “Baby,” he said. “I’m sorry. I came as soon as I heard—”
Piper patted Sean on the arm. “Three’s a crowd,” she said, backing away from me, but not before she squeezed my hand one last time.
And then, Sean was beside me, the heat of his palms on my shoulders, the hymn of his voice distracting me as Dr. Del Sol lifted the scalpel. “You scared the hell out of me,” he said. “What were you and Piper thinking, driving yourselves?”
“That we didn’t want to have the baby on the kitchen floor?”
Sean shook his head. “Something awful could have happened.”
I felt a tug below the white drape and sucked in my breath, turning my head to the side. That was when I saw it: the enlarged twenty-seven-week sonogram with your seven broken bones, your fiddlehead limbs bowed inward. Something awful already has happened, I thought.
And then you were crying, even though they lifted you as if you were made out of spun sugar. You were crying, but not the hitched, simple cry of a newborn. You were screaming as if you’d been torn apart. “Easy,” Dr. Del Sol said to the OR nurse. “You need to support the whole—”
There was a pop, like a burst bubble, and although I had not thought it possible, you screamed even louder. “Oh, God,” the nurse said, her voice a cone of hysteria. “Was that a break? Did I do that?” I tried to see you, but I could only make out a slash of a mouth, the ruby furor of your cheeks.
The team of doctors and nurses gathered around you couldn’t stop your sobbing. I think, until the moment I heard you cry, a part of me had believed that all the sonograms and tests and doctors had been wrong. Until the moment I heard you cry, I had been worried that I wouldn’t know how to love you.
Sean peered over their shoulders. “She’s perfect,” he said, turning to me, but the words curled up at the end like a puppy’s tail, looking for approval.
Perfect babies didn’t sob so hard that you could feel your own heart tearing down the center. Perfect babies looked that way on the outside, and were that way on the inside.
“Don’t lift her arm,” a nurse murmured.
And another: “How am I supposed to swaddle her if I can’t touch her?”
And through it all you screamed, a note I’d never heard before.
Willow, I whispered, the name that your father and I had agreed on. I had had to convince him. I won’t call her that, he said. They weep. But I wanted to give you a prophecy to carry with you, the name of a tree that bends instead of breaking.
Willow, I whispered again, and somehow through the cacophony of the medical staff and the whir of machinery and the fever pitch of your pain, you heard me.
Willow, I said out loud, and you turned toward the sound as if the word was my arms around you. Willow, I said, and just like that, you stopped crying.
• • •
When I was five months pregnant, I got a call from the restaurant where I used to work. The pastry chef’s mother had broken her hip, and they had a food critic coming in that night from the Boston Globe, and even though it was incredibly presumptuous and surely not a good time for me, could I possibly come in and just whip up my chocolate mille-feuille, the one with the spiced chocolate ice cream, avocado, and bananas brûlée?
I admit, I was being selfish. I felt logy and fat, and I wanted to remind myself that I had once been good for something other than playing Go Fish with your sister and separating the laundry into whites and darks. I left Amelia with a teenage sitter and drove to Capers.
The kitchen hadn’t changed in the years since I’d been there, although the new head chef had moved around the items in the pantries. I immediately cleared off my work space and set about making my phyllo. Somewhere in the middle of it all, I dropped a stick of butter, and I reached down to pick it up before someone slipped and fell. But this time, when I bent forward, I was acutely aware of the fact that I could not jackknife at the waist anymore. I felt you steal my breath, as I stole yours. “Sorry, baby,” I said out loud, and I straightened up again.
Now I wonder: Is that when those seven breaks happened? When I kept someone else from getting hurt, did I hurt you?
• • •
I gave birth shortly after three, but I didn’t see you again until it was eight p.m. Every half hour, Sean left to get an update: She’s being X-rayed. They’re drawing blood. They think her ankle might be broken, too. And then, at six o’clock, he brought the best news of all: Type III, he said. She’s got seven healing fractures and four new ones, but she’s breathing fine. I lay in the hospital bed, smiling uncontrollably, certain that I was the only mother in the birthing center who had ever been delighted with news like this.
For two months now, we had known that you’d be born with OI—osteogenesis imperfecta, two letters of the alphabet that would become second nature. It was a collagen defect that caused bones so brittle they might break with a stumble, a twist, a sneeze. There were several types—but only two presented with fractures in utero, like we’d seen on my ultrasound. And yet the radiologist could still not conclusively say whether you had Type II, which was fatal at birth, or Type III, which was severe and progressively deforming. Now I knew that you might have hundreds more breaks over the years, but it hardly mattered: you would have a lifetime in which to sustain them.
When the storm let up, Sean went home to get your sister, so that she could meet you. I watched the Doppler weather scan track the blizzard as it moved south, turning into an icy rain that would paralyze the Washington, D.C., airports for three days. There was a knock at my door, and I struggled to sit up a bit, even though doing so sent fire through my new stitches. “Hey,” Piper said, coming into the room and sitting on the edge of my bed. “I heard the news.”
“I know,” I said. “We’re so lucky.”
There was only the tiniest hesitation before she smiled and nodded. “She’s on her way down now,” Piper said, and just then, a nurse pushed a bassinet into the room.
“Here’s Mommy,” she trilled.
You were fast asleep on your back, on the undulating foam egg crate with which they had lined the little plastic bed. There were bandages wrapped around your tiny arms and legs, your left ankle.
As you got older, it would be easier to tell that you had OI—people who knew what to look for would see it in the bowing of your arms and legs, in the triangular peak of your face and the fact that you would never grow much beyond three feet tall—but right then, even with your bandages, you looked flawless. Your skin was the color of the palest peach, your mouth a tiny raspberry. Your hair was flyaway, golden, your eyelashes as long as my pinkie fingernail. I reached out to touch you and—remembering—drew my hand away.
I had been so busy wishing for your survival that I hadn’t given much thought to the challenges it would present. I had a beautiful baby girl, who was as fragile as a soap bubble. As your mother, I was supposed to protect you. But what if I tried and only wound up doing harm?
Piper and the nurse exchanged a glance. “You want to hold her, don’t you?” she said, and she slid her arm as a brace beneath the foam liner while the nurse raised the edges into parabolic wings that would support your arms. Slowly, they placed the foam into the crook of my elbow.
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 untucked 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 FIO2.
“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?”
“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.”
“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.
Reading Group Guide
This reading group guide includes an introduction, discussion questions, ideas for enhancing your book club, and a Q&A with author Jodi Picoult. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.
Another heart-wrenching, controversial novel by Jodi Picoult, Handle with Care introduces Willow, a smart and charming five-year-old who was born with a brittle bone disease called osteogenesis imperfecta. Over her lifetime, Willow will have hundreds of broken bones. Her mother, Charlotte, will do anything to give Willow the best life possible—even if she has to say under oath that Willow never should have been born. In pursuing a wrongful birth suit against her obstetrician (and best friend for nearly a decade), Charlotte is willing to put everything on the line in hopes of gaining the financial means necessary to take care of her daughter. Picoult constructs an emotionally complex novel, weaving tender and poignant moments into a difficult story of suffering and sacrifice. Charged with thought-provoking questions about medical ethics, morality, parenting, and honesty, Handle with Care asks just how far we would go to care for the ones we love.
Questions for Discussion
1. Charlotte and Sean are faced with a very difficult decision when presented with the option of suing for wrongful birth. How did you feel about the lawsuit? The matter is complicated in many aspects, but especially because of Charlotte’s close friendship with Piper, her ob-gyn. How might the O’Keefes have considered and entered into the lawsuit if they had not had a personal relationship with Piper? Would your own reaction to it have changed?
2. During the filming of a day in Willow’s life, Charlotte purposely asks Willow’s physical therapist to try some exercises that she knows Willow isn’t ready for yet, and Willow begins to cry in pain. Charlotte rushes to her daughter’s side, blaming the physical therapist, and when she asks if they got that on film, Marin—Charlotte’s lawyer—is angry at Charlotte for exploiting her daughter. Do you agree with Marin that Charlotte exploits Willow? Charlotte believes she is doing everything out of love for Willow, to win the case that will get her the care she needs, but does this take it too far? Where can we draw the line?
3. Breaking is a theme in Handle with Care: bones break, hearts break, friendships break, families break. Consider examples from the book and discuss why you think certain breaks can or cannot be mended. Is there anything in the book that represents the unbreakable?
4. The author inserts recipes throughout the book that highlight certain baking techniques, such as tempering, blind baking, and weeping. How do these recipes provide further insight into the story and into Charlotte’s character in particular?
5. Throughout the story, the question is raised of what it means to be a mother. For Charlotte, it means doing anything in her power to provide the best life for Willow, but at the same time, her other daughter’s suffering goes unnoticed as she develops bulimia and begins cutting herself. For Marin, the question of what it means to be a mother addresses the issues of her adoption. Is a mother someone who gives birth to you and gives you away, or the woman who raises you? Discuss the different ideas about mothering that the author presents in this book. At what moments do certain characters fail or succeed at being a mother?
6. The term wrongful birth suggests that some people never should have been born. If abortion had been legal when Marin was conceived, she likely would not have been born. Willow’s severe disability, had Charlotte known about it early enough, could have been cause for abortion. How do we determine what kind of life is worth living? Who has the right to say whether a pregnancy should be brought to term?
7. Discuss the roles that honesty and deception play in this novel. How do the characters lie to themselves? To each other? Is it sometimes better not to know the truth?
8. Charlotte is confident that the potential end of her lawsuit will justify the means, but Sean can’t handle the idea that the means may leave Willow thinking she is unloved or unwanted. Clearly, they both love their daughter, but express it in drastically different ways. What do each of their approaches say about love? Do Charlotte’s actions speak louder than Sean’s words?
9. What message does the trial verdict send? Do you agree with the jury’s decision?
10. How do you think Amelia’s testimony affects the outcome of the case?
11. We follow Marin through the search for her birth mother, and what she eventually finds out about the circumstances surrounding her conception are truly devastating to her. Why do you think she thanks her birth mother for this information? Discuss Marin’s reaction to what she learns.
12. Why do you think the O’Keefes never cash their $8 million check? How do you feel about what they end up doing with it?
13. How do you feel about the ending? Why do you think the author chose to write it this way?
Enhance Your Book Club
Try baking some of Charlotte’s recipes for your book club meeting. Discuss the different baking techniques you used; were you able to relate to Charlotte’s experience of making these treats?
Learn more about osteogenesis imperfect by visiting www.oif.org.
Visit www.jodipicoult.com to view book trailers, see what Jodi’s up to, and find out about upcoming signings and appearances.
A Conversation with Jodi Picoult
Q: What led you to OI as the topic for this book? Did the idea of a wrongful birth suit come first or second? Talk about the research required for writing this novel.
A: The seed for Handle with Care began with an article I read about wrongful birth—a mother in New York sued her ob-gyn after her son was born with severe chromosomal abnormalities and won a multi-million-dollar settlement. It was clear from the article that she loved this child dearly—but that in order to give him a better lifestyle, she needed to tell the world she would have aborted the fetus if given the chance. That moral conundrum got me thinking: what if her child had not been profoundly mentally disabled, but just physically disabled? What if her child could hear her in court, saying that she wished he’d never been born?
That led me to osteogenesis imperfecta. Also known as brittle bone disorder, it is a genetic bone disease characterized by fragile bones that break easily. It’s caused by a mutation on a gene that affects the body’s production of collagen in bones. It affects between twenty-five thousand and fifty thousand Americans—the range is large, because mild cases of OI often go undiagnosed. There are eight types of OI, ranging from lethal at birth to mild with few symptoms. A person with severe OI might experience hundreds of fractures and have a reduced life span. Other symptoms include short stature (people with severe OI are approximately three feet tall), hearing loss, curvature of the spine, respiratory failure, and loose joints and muscles. Physically, it’s a very difficult condition—but mentally, people who have OI are one hundred percent normal. Many kids with OI are even brighter than their able-bodied friends, because they do so much reading after a break, when they can’t run around.
For research, I tried to walk a brief way in the shoes of a parent whose child has OI, by visiting multiple families with kids who were afflicted by the disorder. The first girl I met with OI, Rachel, had Type I—a milder form—but had suffered nearly fifty breaks in her eight years because her parents wanted her to live as normal a life as possible. Rather than having her walk on her knees or restrict her activities, they allowed her to do what she wanted… knowing that it would lead to broken bones. I remember asking Rachel what it felt like when that happened. “It feels like lightning under my skin,” she said, and I realized then that the pain these kids feel is just what you or I would feel if we broke a bone—it just happens much more frequently for them. From Rachel, I moved on to meetings with kids who had Type III OI—the most severe type you can get that isn’t lethal at birth. I remember the flash in five-year-old Hope’s eyes when the waitress at the restaurant mistook her for a toddler, due to her size; the pain in Jonathan’s mom’s voice when she talked about how she used to think about just leaving him and running away, because she was so afraid she’d be the one to cause another break. During my visit with Matthew, his mom asked me to take him out of his car seat—and I panicked. What if I was the one who snapped a bone this time? This, I realized, was what these parents went through on a daily basis.
The kids I met who had OI were all sweet, bright, engaging, adorable—and much more than the sum of their disabilities. This was best illustrated in the case of a young woman who became my technical advisor for Handle with Care. Kara Sheridan is a Paralympian who swam in Athens for Team USA in 2004. She is currently a Ph.D. student in clinical psychology and is busy planning her wedding. She also has Type III OI. When I asked her what she wished people would know about OI, she said it’s a challenging and painful condition, but it doesn’t mandate a tragic life. The moments she’s cherished the most have come about because of her condition, and are just as important a part of OI as the medical difficulties. She also pointed out that no child has OI alone—it affects families, friends, and loved ones by default.
Many people shy away from a child in a wheelchair—but when you spend time with kids who have OI, you are not struck by how different they are from able-bodied children, you’re struck by how similar they are. They giggle, they flirt, they tease their brothers. They tell knock-knock jokes and whine about long car rides and hate broccoli. But they also know about things regular kids don’t: splints and braces and pamidronate infusions and spinal rodding. And when you watch them interacting with their parents, you realize that these mothers and fathers are just like the rest of us: willing to do whatever it takes to give their child the best life possible.
Even if that means lying to a judge and jury.
And suddenly, it’s a lot harder to tell whether that’s blatantly wrong… or impossibly right.
Q: The characters in your books are always layered and complex, as are the issues that plague them. How do you create a character like Charlotte whom readers can love and hate at the same time?
A: Well, for me, it’s a lot harder to create a flat character who’s either all villain or all hero. Most of us are a combination, aren’t we? Charlotte’s the best kind of character—one who is doing something that looks unpalatable, but is doing it for all the right reasons. In this way she reminds me a bit of Nina Frost from Perfect Match. You want to hate her—but can you really say that if it were you, you wouldn’t at least think about doing the same thing she does? Charlotte’s tragic flaw, in my opinion, is that she is so single-minded in her pursuit of making Willow’s life easier that she neglects the rest of her support system—her friends and her family.
Q: How did you choose the recipes that appear throughout the book? Do you believe in the significance they hold for Charlotte? Are you a baker yourself?
A: Before I got married, I was lucky enough to have a roommate who became one of my best friends. Now Katie works at the Smithsonian organizing special events—but prior to that, she went to culinary school. When I knew that I wanted Charlotte to be a baker, I turned to her and asked for help. Charlotte, as a baker, would believe that the sum of the ingredients is so much more than its parts—this is true for her when it comes to Willow, too, who is so much more than a litany of moments when she broke a bone or had a surgery or was sidelined to recuperate. I do bake (too much, if you ask my husband, who is constantly cursing me for a pan of brownies cooling on the stove that he is compelled to eat)—and often I have been struck by the metaphorical language of baking. I wanted Charlotte’s cookbook to be a collection of these terms, with accompanying recipes. So one day I emailed Katie a list—words like weeping, hardball, blind baking—and asked her to create recipes that might involve each term. I have to admit that rarely is my fact-checking process so delicious… I got to bake, and road test, every recipe in the book.
Q: During the course of the trial, Amelia develops an eating disorder and starts cutting herself. Did you see this as the natural progression for her character? While conducting your research, did you find that these types of behaviors in siblings of disabled children were common?
A: While doing research with a child psychiatrist about adolescent bulimics, I learned that cutting is very common for those girls. Apparently, bulimia involves a lot of self-hatred… and cutting figures into that. Siblings of disabled children aren’t always like Amelia, thank goodness—I’d hope that their families would do a better job of including them than the O’Keefes do. For Amelia, the difficulty of having a sibling with a disability is compounded by the fact that she feels she’s failed her sister (in Disney World, for example) and that there are very high stakes in the household for being a child who isn’t perfect (which would be Amelia’s interpretation of her mother’s lawsuit).
Q: With the multiple narrators you’ve created, is there a character that you connect with most, or that you feel represents your own voice?
A: I had great sympathy for all of the characters in this book—each of them has a valid point to make, in my opinion. So I’d have to say that at different times, I sided with each one!
Q: Your narrators share their stories as though they are telling them to Willow. Why did you decide to construct the novel this way?
A: I have always wanted to write a book in the second-person narrative voice, but it's tricky and calls for the right kind of story. Because the whole book revolves around Willow, I wanted her to feel present and accounted for—hence the structure. Plus, given the behavior of these characters, they deserved to explain themselves directly to Willow. But I also wanted the reader to feel viscerally what it's like to be at the center of this kind of controversy—and the second person narration helped foster the sense that the characters are talking to you.
Q: As the author, do you ever feel as though you’re taking on the role of the jury? How did you decide what the ruling of the wrongful birth suit would be?
A: I like to think of my reader in the role of the jury, actually. It’s my job as writer to present all sides of the story and then, based on the evidence, leave you to decide what was wrong and what was right. As for a ruling here, it wasn’t as important to me as the final twist of the book—but in order to have that final twist, I had to first have the jury rule a certain way… and that’s all I’m going to say before I give it away!
Q: Why did you decide not to share Willow’s perspective until the end?
A: Because the reader serves as Willow’s “stand-in” in the book—since the characters are explaining themselves to “you,” it makes you part of the action, and therefore part of the judgment of their behavior. And yet I felt the reader, after hearing everyone's explanation about the wrongful birth issue, also deserved to hear directly from Willow to see how everything had affected her.
Q: You’ve said before that you know how a book will end before you write the first word. Was this also true for Handle with Care? Do you ever change your mind about an ending as you get deeper into the story?
A: I do know the ending before I write a single word, and I did here too. I will tell you that I think Handle with Care is the saddest book I’ve written—and coming from me, that’s pretty dire! I never wavered on the ending, however, because there’s a bit of a morality lesson in there as well—it’s a real “Be careful what you wish for” moment.
Q. What’s your next project?
A: My 2010 book is about a teenage boy with Asperger’s syndrome. He’s hopeless at reading social cues or expressing himself well to others, and like many kids with AS, Jacob has a special focus on one subject—in his case, forensic analysis. He’s always showing up at crime scenes, thanks to the police scanner he keeps in his room, and telling the cops what they need to do… and he’s usually right. But then one day his tutor is found dead, and the police come to question him. All of the hallmark behaviors of Asperger’s—not looking someone in the eye, stimulatory tics and twitches, inappropriate affect—can look a heck of a lot like guilt to law enforcement personnel—and suddenly, Jacob finds himself accused of murder. I wanted to write a book about how our legal system works well for people who communicate a certain way—but lousy for those who don’t.