“Do you know what ‘sex’ means?” she asked. Still no answer.
“Well, where do babies come from?” she tried.
“A stern and an egg!” he shouted triumphantly.
“It’s a sperm and an egg,” she explained. “Not that you really need to work that into conversation.”
But the topic of babies started to come up more often than Gayle would have expected.
“I can’t wait to be a dad,” Eli said one day, apropos of nothing.
“Why’s that?” Gayle asked.
“Because I want to take care of a baby, and hold him, and tell him I love him.”
Gayle blinked, feeling the familiar wetness in her eyes. If love were all it took to raise a child, Eli would be the best father in history. He’d probably still be better than many who stumbled into fatherhood. But Gayle knew this would not be a part of his future, or shouldn’t be, at least. She reminded him that not every man becomes a father.
“You can love a baby without being a dad,” she said gently. “If Emily has a baby one day, you can still hold him and tell him you love him. And he can call you ‘Uncle.’ ”
Gayle wasn’t sure if it was Eli’s health class, or maybe a TV show, that had planted the seed, but he suddenly seemed fixated on babies and birth. He asked Gayle to tell the story of his own birth over and over.
“I went to the hospital, and I was in labor,” she began.
“You couldn’t wait to meet me, right?” he interjected.
“I couldn’t wait to meet you,” she said. “Then you came out, and you had all this hair, and your cheeks were so chubby, and you were so cute.”
“And I had Williams syndrome!” he said happily.
“Well, I didn’t know that yet,” she said. She didn’t tell him that finding out was the most difficult discovery she’d ever made, and one she was still coming to terms with. She didn’t want to complicate his cheerful narrative. To him, Williams syndrome was merely a detail in the story of who he was, and how he came to be.
Acknowledgments
Getting to know the Williams syndrome community, especially Gayle and Eli, has been a life-changing experience for me. Apart from being tremendously fun to spend time with, Gayle and Eli have given me an invaluable education in friendship, courage, and kindness. They, along with Mimi and the rest of their family, welcomed me into their lives and treated me with genuine warmth and generosity. I learned more from them than I ever hoped to, and I feel privileged to consider them true friends.
I couldn’t have written this book without the aid of Terry Monkaba, Barbara Pober, and the Williams Syndrome Association. They, and others in the Williams community, have been an endless source of help and support throughout the six years that I spent researching and writing the book. A number of families invited me to their homes, shared their stories with me, and patiently answered my questions. I am grateful to them and to the clinicians and researchers who walked me through the science behind Williams syndrome, including Julie Korenberg, Ursula Bellugi, Helen Tager-Flusberg, Karen Levine, Carolyn Mervis, Bernard Crespi, and Maria Mody. Attorneys Meredith Greene and Mary Denise Cahill helped me navigate the complexities of disability law.
Heartfelt thanks to my amazing agent, Brettne Bloom, for working tirelessly to bring this story into the world. I’m grateful as well for the excellent editorial guidance I received from both Karyn Marcus and Millicent Bennett. I was lucky to work with an awesome team at Simon & Schuster, including Sydney Morris, Megan Hogan, and Lisa Rivlin, along with copyeditor extraordinaire David Chesanow.
This project began as my MFA thesis at the University of New Hampshire’s creative writing program, and it wouldn’t have gotten off the ground without the mentorship of Sue Hertz and Meredith Hall, as well as the unflagging support of my fellow writers, including Larry Clow, Alicia de los Reyes, Alan Schulte, and Ambre Earp Lahar. I’m lucky to have been influenced by some stellar editors and teachers over the years: Deb Davis, Susan Rieger, Joseph Shaw, Michael Wagar, Gordon MacCracken, Fred Gaskins, Felicia Mason, Will Sutton, Tony Freemantle, Tara Young, and Mark Washburn.
To my unpaid editor, advocate, and life coach David Kaplan, I owe a debt of gratitude, plus that Porsche I promised him. I’m indebted as well to the readers who gave incisive feedback on the early (and middle, and late) drafts of this book: Andrew Sessa, Mollie Goldstein, Christine Cullen, Claudia Kolker, Carrie Feibel, Weiwei Zhong, Jacob Sargent, Seth Freedland, Alicia P.Q. Wittmeyer, Molly MacLaren, Patrick Lynch, Cynthia Cho, Dan Taylor, and my parents, Carole and Chuck Boster.
The Norman Mailer Center and the Hambidge Center for the Creative Arts gave me the gift of time and space to write parts of this book in the company of other artists and writers. My sincere thanks go to them and to the talented people who inspired me there, especially Mimi Swartz, Kurt Pitzer, and Greg Curtis.
Moral support and other forms of assistance came from Eric Kayne, Katie Slater, Jessie Gill, Guin Basnight, Jena Moreno, Sarah Viren, Bella Latson, Brad and Michelle Latson, Julia and Tommy Brooks, and Larry the cat, even if his help included walking on my keyboard whenever I tried to type.
Finally, thanks and love to David Brooks for his patience and support, and for enriching my life in every way.
How to Get Involved
The Williams Syndrome Association provides resources and support for the roughly 30,000 Americans with Williams syndrome and their families. It also sponsors research, promotes awareness, and organizes medical conferences and family events as well as camps and enrichment programs for people with Williams. For more information, or to donate to the WSA’s scholarship funds, research grants, and other programs, visit williams-syndrome.org.
Best Buddies is an international nonprofit organization dedicated to helping people with intellectual and developmental disabilities form meaningful friendships, find employment, live independently, improve communication skills, and feel valued by society. To volunteer, visit bestbuddies.org.
To donate to a fund that benefits Gayle and Eli directly, go to www.youcaring.com/gayleandeli.
About the Author
© ERIC KAYNE
Jennifer Latson is a former Houston Chronicle reporter whose work has appeared in Yankee Magazine, Rice Magazine, and the Boston Globe, as well as on The Hairpin and Time.com. She has a BA in English from Yale and an MFA in creative nonfiction writing from the University of New Hampshire. In 2013, she was a recipient of the Norman Mailer Fellowship for nonfiction. Although she grew up in Connecticut and still considers herself a stoic New Englander at heart, she now lives in Houston with her partner, David, and their eighteen-pound cat, Larry. This is her first book.
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Authors.SimonandSchuster.com/Jennifer-Latson
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