I didn’t know if Sarah would ever read this book. She hadn’t read my first one. It was about the way my job in the emergency room almost wrecked my family. John and Sam haven’t read the first book, either.
When I first started writing, Sally and I made a deal: I could write whatever I wanted without apology or explanation and she could delete whatever she wanted without apology or explanation. That way, I could write as honestly as possible and still stay married.
With this book, Sally had the same right to make deletions. I didn’t, however, extend that prerogative to Sarah. On one hand, that decision seemed arbitrary: why shouldn’t Sarah be able to edit her own story? On the other hand, Sally and I had exercised our best judgment in all aspects of Sarah’s life since she was born, and continued to do so.
Although I didn’t want to give Sarah final editorial authority, I did want to give her the chance to have her say before the book was published. By the time it was nearly finished, she had been in the second group home for several years. Like one brother in college, and the other in the Army, Sarah came home for a week or so every Christmas. During the holidays, I printed a copy of the manuscript, took it to Kinko/FedEx and had it spiral-bound.
When I got home, Sarah was on the front porch, swinging high and singing loudly. I stood a few feet away. She pulled her earphones down around her neck, and waited.
“You know the book I’m writing?” I asked. “With you in it?”
“Yeah?”
“Here it is.” I gave her a copy of the initial draft. It was about an inch and a half thick. “Would you like to read it?”
“I don’t know.” She continued pumping with her legs.
“I’ll just leave it here,” I said. I put it on the small round table under the mailbox. “If you decide to read it, I’d like to know what you think of it.”
“I don’t know,” she repeated. “We’ll see.”
The next time I went out onto the porch, the manuscript was gone.
Two mornings later, I was pouring coffee for Sally and me. Sarah walked into the kitchen. “Good morning, favorite daughter,” I said.
Usually, Sarah would laugh, and say, “I’m your only daughter.” Then I’d say, “But you’re still my favorite daughter,” and she’d repeat “But I’m your only daughter,” and laugh again.
This morning, she didn’t say anything.
“You okay?” I asked.
“I don’t feel like joking around,” she said. She poured a bowl of cereal without looking at me.
“Are you usually grumpy when you wake up?” I remembered her as cheerful in the mornings.
“Not really.” She added milk, her movements slow and deliberate.
“What’s wrong?”
“I read your book.”
I pulled out the chair next to hers, and sat.
“It’s long,” she said. “I was up till 11:30.”
I waited. “Anything else?”
“You don’t think I’m a human.” She turned and looked at me in the eyes.
“What?”
“That’s what you said.” She didn’t blink. “In your book.”
“Oh, no, Sarah. I didn’t say that at all.”
“Yes you did. In your book.”
“I didn’t write it very clearly, if that’s what you think.”
“And you said you didn’t want me.” Her voice was calm, her gaze unwavering.
“No, Sarah, no.” I touched her shoulder. “That’s not at all what I said in the book.”
“It’s how it seemed.”
“No, sweetheart. The Down syndrome has been hard at times, but you’ve been great.”
She turned her face away.
“I am sorry.” I waited.
“Was Mommy smoking when I was born?” She turned to look at me again.
“What?”
“You said she was smoking. When I was born.”
“Oh, the electrocautery pen. When they did the C-section, they had to cut through Sally’s stomach, and there were some small blood vessels that were bleeding. They used an electric thing to burn them shut. That’s where the smoke came from.”
“Oh.” She turned back to her cereal. “You can go now.”
I carried the cooling cups of coffee to the bedroom, sat in bed with Sally, and told her about Sarah’s response to the book.
“Do you think she read the whole thing?” Sally asked.
“I don’t know. She said she did. Says she was up till 11:30.”
“Wow.”
Sarah walked into our bedroom. She climbed up onto the bed, and lay between Sally and me, facing Sally.
“Good morning again, favorite daughter,” I said.
She didn’t answer.
“Your father said good morning,” Sally said.
“Were your feelings hurt by the book?” I asked.
She nodded.
“I can see that,” I said. “There’s a lot of hard stuff in there.”
“Yeah,” Sarah said. “About me not being human.”
“Sarah,” I said. “That wasn’t me. That was John Locke, and Peter Singer. And I disagreed with both of them.”
“It didn’t seem like it.”
“Do you know the F word?” I asked.
She turned partway to face me. “Do you mean ‘fuck’?”
“Yeah, that’s the one. In the book I said, ‘Fuck John Locke.’ That’s how much I disagreed with him.”
Sarah turned to face Sally again.
“The whole point of the book is that you’re great but it took me a long time to see that.”
Sarah scooted away from me, closer to her mother.
“In fact, you’re going to be everyone’s favorite character. Just like Sally was in my first book. Everyone’s going to think that I was a crummy dad, but that you were great.”
“Hah!” Sarah said. “You’ve got that right.” Her back was still to me, but she didn’t sound as hurt, or angry.
Sally looked over at me, and winked.
“Your book has too much Down syndrome in it,” Sarah said.
“But Down syndrome is what your character has to overcome.”
She turned halfway toward me.
“Cinderella is the hero of that story because she had to overcome all that washing and working and stuff. It wasn’t about the stepsisters, because they didn’t have to overcome anything. They already had it made.”
Sarah was listening.
“I can just see it now,” I said. “After the book comes out, customers are going to write reviews on Amazon, saying that I was cold and mean and that you were great.”
“The wicked stepfather.” She looked at me, and then away. “Hah!” Her tone was wry. “Good try, Dad.”
“If they turn it into a movie” I said, “Who’s going to play you?”
“I will,” Sarah said, turning to face me again.
“Meryl Streep for Mom?” I asked.
“She can play herself. Johnny Depp can play you.”
“Johnny Depp is going to be kissing my wife?” My voice scaled upward.
Sarah laughed. “No, Dad,” she said. “In the movies, they kiss like this.” She sat up, and softly cupped her palm across my lips. She kissed the back of her hand: her eyes open, looking into mine.
A few months later, Sarah and I were in the truck, on the way to a movie. This one was about a Civil war soldier who got teleported from a gold mine in Arizona right smack into the middle of a war on Mars.
“My editor agrees with you,” I said.
Sarah turned to look at me.
“She thinks the draft I sent is too sad,” I continued. “And has too much about Down syndrome in it.”
“Hah!” Sarah laughed. “Told you.”
“Yes, you did. And I flew all the way up to New York, and she said the same thing you did, right here in Durham.”
Sarah laughed again, and smacked her thigh with her palm. Chuckled.
“I need to come up with some happy stories,” I said.
Sarah turned and nodded. It had been self-evident.
“Can you help me think of some?” I asked.
“Not really,” she said. “You were always working. Mom was always stressed.”
“But I need some happy stories,” I said.
“Good luck with that, Dad.”
On movie nights, Sarah’s favorite place to eat was Chick-fil-A, because they had gluten-free choices, and she had celiac disease. She always got grilled chicken without the bun. This time she decided to get the carrot and raisin salad to go with it, instead of fries, so she could get nachos and cheese at the movie.
“I don’t want to eat too much,” Sarah said, “so I don’t vomit.” A year previously, Sarah had upchucked into her lap while at the movies with Gin Wiegand, a friend of the family. Gin is Sarah’s other movie buddy. Sarah will call her and say, “Gin, let’s go see The King’s Speech,” or “Gin, wanna go see Toy Story 3?” They also ride together when Gin’s delivering meals-on-wheels.
“Make sure you cut the chicken up into small pieces,” I said. “And chew a lot.”
“Yeah,” she said. “So I don’t choke.”
I nodded.
“When I choked on that giant jawbreaker, everyone was freaking out.” Holding her fork in her fist, she held the meat down and began to saw across it with the plastic knife.
“Jawbreaker?” I hadn’t heard about this time.
“At home,” she said. “The staff, the other residents, everyone was going nuts.”
“It’s scary,” I said. When she’s choking, Sarah’s eyes open wide, and her chest and abdomen heave. She sits, lurching, her mouth open, silent, tears streaming down her face. Once it’s out, she goes back to eating as if nothing happened.
She nodded, and cut her meat into smaller pieces. “Well, your book is going to scare the parents of children with Down syndrome,” she said.
“You think?”
“All that stuff about Hitler killing people with special needs?” Sarah took a bite, chewed, and swallowed. “They’re going to be saying, ‘Oh my God, what if he comes back to life!!! He’s going to kill my baby!!!’ ” She then laughed at how ridiculous that would be.
“But it’s history people need to know,” I said.
“Maybe.”
“What was the guy’s name who said people with Down syndrome couldn’t think about symbols?” Sarah and I were sitting in the plush seats of the theater, waiting for the movie to start.
“Say again?”
“The guy in your book. The one who said people with disabilities were animals.”
“Oh,” I said. “John Locke. But he didn’t say that people with disabilities were animals. He just said that beasts couldn’t form abstract thoughts, and that neither could people with intellectual disabilities.”
“I still don’t like him.” Sarah’s tray of corn chips and cheese was perched on her lap, untouched.
“I like a lot of what he wrote,” I said. “But he was wrong about that.”
“Well,” Sarah said. She shifted in her seat, and looked at me. “Are you going to leave him in your book?”
“I’m not sure,” I said. “I’m still working on it.”
“Well, yeah,” Sarah said. “And what about the parents of children with Down syndrome? What are they going to say when they read your book?”
“I don’t know, Sarah. Mostly I hope they see how great you are.”
“Nice try, Dad.” She laughed.
“I’m serious.”
She shrugged. “I still don’t like that Locke guy.”
John’s twenty-first birthday landed on Mother’s Day. He had run into some problems in college and was back home, working a maintenance job: cleaning the pool, painting fences, and sweeping the tennis courts at the Duke Faculty Club.
Mother’s Day had always been a difficult time for Sally. Cards and flowers and breakfast in bed—all the things husbands and children think we’re supposed to do—seemed to touch a sadness that always stayed beneath the surface.
Sarah had called Sally a couple of weeks previously, suggesting that they go to a movie together to celebrate Mother’s Day—a romantic comedy. Just the girls. Sally picked her up at the group home, and they went to a matinee showing of a movie based on a book by Nicholas Sparks, The Lucky One. Then they came back to the house.
I’d ordered pizza, per John’s request, and had made one for Sarah with a gluten-free crust Sally had picked up at Whole Foods. We ate in the dining room. Sally and I brought in the twelve-inch chocolate chip cookie, twenty-one tiny flames wavering at the periphery. After the “Happy Birthday” song, John blew out the candles.
He opened his presents: a couple of nice shirts from Sally and me. Half a dozen socks. A card from Sarah. We then went into the computer room for a slideshow I’d put together. Baby pictures, John as a toddler. “Endless Summer” playing in the background, the guitar music seamlessly matching each image as it came up. A green-eyed four-year-old in a red plastic fireman’s hat. John’s arms up in the air, grass-surfing down a small hill in the yard. John on the rope swing, the thick yellow rope’s end whipping the air, John’s grip tight. John and Sam running through the sprinkler. Stilts, bicycles, the boys lying on their backs on the roof of the playhouse. John standing straight in a blue and yellow Cub Scout uniform. A sleepy middle school kid in a sleeping bag. Skim-boarding at the beach, body curving graceful as a wave. Family pictures—frowns and smiles and mugging. Cousins and aunts and uncles, and grandparents. John and Sam wearing sunglasses on the Golden Gate Bridge. Graduation day, purple robe and mortarboard. Guitar music in the background.
The slideshow ended with a photograph of the plaster casts of their hands that we’d made at the beach when Sarah was ten, John six, and Sam four. The surfaces were textured with sand and tiny bits of seashell. Their palms faced outward, each one distinct: Sam’s hand so small, John’s slightly larger, fingers splayed as if stopped mid-wave, Sarah’s fingers curved ever so slightly, as if gently cupping the air.
The last image dissolved and the music faded. We all gave subtle nods.
“Thanks,” John said, still facing the computer’s monitor. He’d wiped his eye a few times with the back of his index finger.
“That was good.” Sam gave a short nod.
Sally patted my shoulder.
“It was touching,” Sarah said.
Sarah went out to the front porch to swing some more before she went back to the group home. She’d forgotten her music player, so she didn’t sing—she just made her impossibly high arcs over and over.
Sally and I put the leftover pizza in the fridge, cleared the plates.
“I can take her back,” I said.
Sally nodded. “Thanks.”
“Can I take the Mustang?”
She tossed me the keys. I no longer had my luxury automobile: there had been a credit card I couldn’t pay down, and I felt silly driving a car with leather seats while I owed money on consumer debt. So I sold the car and paid off the Visa.
I still had the pickup I’d bought before John was born, but it wasn’t nearly as much fun to drive as Sally’s Mustang, with its five-speed manual transmission, convertible top, and Sirius XM radio.
Sarah and I settled into the Mustang, and rumbled down the street. A chorus from a Broadway show came from the quadraphonic speakers. I stopped at the corner and clicked the search button until I found the E Street Band in the middle of Darkness on the Edge of Town.
“Mom and I listen to show tunes,” Sarah said.
“Yeah, but you and I listen to The Boss.”
“Not really.”
“You don’t like Bruce Springsteen?”
“No.”
“Show tunes?”
She nodded.
I pushed a preselect button. Hits from the sixties. Another button. Hits from the seventies.
Sarah leaned forward, pushed a button, and settled back into her seat. A show tune cascaded from the speaker, conjuring slender men in top hats and long-legged showgirls twirling canes and top hats.
I looked over at her. Really?
She raised her eyebrows. “What?”
“Nothing.” I settled into the bucket seat and pulled into traffic.
“Can you come to an open house on Wednesday?” Sarah asked. “For Voices Together.” The choir Sarah sang in. “You could put it in your book.”
“I’d love to,” I said, “but I’m going to be working a string of night shifts. Four in a row.”
“Ouch.”
We drove.
“It’s coming along,” I said.
Sarah said something I couldn’t understand.
“Say again?”
“The happy stuff,” she said. “About Down syndrome.”
I looked at her, and then back to the road.
“The good things about it,” she continued.
I kept driving.
“You could write about how people with Down syndrome are more sensitive,” she said, gesturing with her palm up. “Like the girl in Glee.”
“Well,” I said. “There you go.”
“And people with Down syndrome are kinder, and better listeners,” she said. “Smarter, too.”
“I guess I could put it in.”
“It would make it a better book,” she said.
I nodded. We drove.
She looked over at me. “I just don’t see what’s so bad about Down syndrome.”
The parents and professionals who came before us changed the way the world thinks about people with disabilities. Sarah, and our entire family, has benefited from those changes. But the change that really had to happen wasn’t in the world. It was in me.
Over time, and as I wrote this book, Sarah became less and less “my daughter with Down syndrome” and more and more “my daughter.”
No qualifiers needed.