Books
Harnessing Grief: One Mother's Quest for Meaning and Miracles
When Maria Kefalas’s daughter, Calliope, was diagnosed with a degenerative, and uncurable, genetic disease, the last thing Maria expected to discover in herself was a superpower. She and her husband, Pat, were head over heels in love with their youngest daughter, whose spirit, dancing eyes, and appetite for life captured the best of each of them.
When they learned that Cal had MLD (metachromatic leukodystrophy), their world was shattered. But as she spent time listening to and learning from Cal, Maria developed the superpower of grief. It made her a fearless warrior for her daughter. And it gave her voice a bell-like clarity – poignant and funny all at once.
This superpower of grief also revealed a miracle. Not the conventional sort that fuels the prayers of friends and strangers, but a realization that in order to save themselves, Maria and Pat would need to find a way to save others. And so, with their two older children, they set out to raise money so that they, in their son PJ’s words, could “find a cure for Cal’s disease.”
They had no way of knowing that a research team in Italy was closing in on an effective gene therapy for MLD. Too late to help Cal, this news would be the start of an unexpected journey that would introduce them to world-famous scientists, brilliant doctors, biotech CEOs, a Hall of Fame NFL quarterback, and a wise nun and would involve selling 50,000 cupcakes. They would travel to the FDA, the NIH and the halls of Congress in search of a cure that would never save their child. And their lives would become inextricably intertwined with the families of 13 children whose lives would be transformed by the biggest medical breakthrough in a generation.
A memoir about heartbreak that is also about joy, Harnessing Grief is both unsparing and generous. Steeped in love, it is a story about possibility.
“Kefalas shares a powerful, intimate reflection of grief and hope as she recounts her experiences with her youngest child, Calliope, diagnosed with metachromatic leukodystrophy (MLD), a degenerative, incurable genetic disease. The author’s writing is candid and immersive. Her self-awareness guides the pace of the story and is consistently impactful, whether she is describing a hospital visit, getting dressed for work, reacting to kindness amidst grief, or recounting the economic and social costs of chronic illness. Much of the book takes place within the year following Calliope’s diagnosis, an effective choice for conveying the significance of these details. The story is also punctuated by loving descriptions of daily life with Calliope. Readers bear witness as Kefalas and her family move toward what she refers to as the “superpower of grief” and learn about her current work as an advocate for MLD with her Calliope Joy Foundation. Readers interested in personal portraits of grief and illness may also enjoy Emily Rapp Black’s The Still Point of the Turning World. A stunning, candid memoir. Those seeking a relatable story as they process grief and fans of personal memoir will appreciate this book equally for its honest, insightful storytelling.”- Library Journal, Starred Review
“Kefalas somehow makes poetry and science, grief and hope the same powerful language. She is fearless and unsparing about the facts that surround her toddler’s illness, and generous and valiant in describing her efforts to fund the research that might cure someone else’s child sometime in the future. Brave, defiant, she shares her journey through profound grief and rage to a faith in the miracle of love.”- Meredith Hall, bestselling author of Without a Map
“A rapidly unfolding but gently paced story of personal transformation forged in grief. I could not put it down. In it, I recognize the stories of so many other families who have received a fatal diagnosis for their child and rise to be exactly the parents their child needs, with love and hope at the core. Maria finds the blessings in her story and inspires us to see bigger and deeper. She shows us that grief can be a superpower capable of changing the world and saving ourselves. And an added bonus is the captivating telling of the story of gene therapy, the golden promise for children affected by rare disease. I am grateful for this book. “ - Blyth Lord, Founder, Courageous Parents Network and rare disease mom
“‘When the worst possible thing happens, you have nothing left to fear.’ Maria Kefalas illustrates, with fierce love and unexpected humor, the power of grief to transform and motivate a warrior mother to change the world. The Calliope Joy Foundation, named for the author’s daughter, is doing just that—and providing an invaluable resource within the pages of this book for others who seek to do the same.”- Marianne Leone, author of Jesse and Ma Speaks Up
“Harnessing Grief is an inspiring, searingly honest account of a brave woman going through unspeakable loss—and gaining deep wisdom. Anyone who has suffered tragedy will identify with, and learn from, Maria Kefalas’s terrible, beautiful journey.” - Martha Beck, PhD, bestselling author of Expecting Adam and Finding Your North Star
Hollowing Out the Middle: The Rural Brain Drain and What It Means for America
In 2001, with funding from the MacArthur Foundation, sociologists Patrick J. Carr and Maria J. Kefalas moved to Iowa to understand the rural brain drain and the exodus of young people from America’s countryside. They met and followed working-class “stayers”; ambitious and college-bound “achievers”; “seekers,” who head off to war to see what the world beyond offers; and “returners,” who eventually circle back to their hometowns. What surprised them most was that adults in the community were playing a pivotal part in the town’s decline by pushing the best and brightest young people to leave.
In a timely, new afterword, Carr and Kefalas address the question “so what can be done to save our communities?” They profile the efforts of dedicated community leaders actively resisting the hollowing out of Middle America. These individuals have creatively engaged small town youth—stayers and returners, seekers and achievers—and have implemented a variety of programs to combat the rural brain drain. These stories of civic engagement will certainly inspire and encourage readers struggling to defend their communities.
“An intriguing new book . . . Carr and Kefalas argue that it will take more than just free land initiatives to reverse rural America’s brain drain.”—Christina Gillham, Newsweek
“A fascinating study that brilliantly describes and analyzes the problems of rural towns in America that are emptying out.”—William Julius Wilson, Lewis P. and Linda L. Geyser University Professor, Harvard University
“The authors present a brave and daunting examination of why the most talented, the most productive young people leave our small towns. . . . This book is so generative, so fiercely compelling . . . I urge you to read it.”—Mildred Armstrong Kalish, author of Little Heathens: Hard Times and High Spirits on an Iowa Farm During the Great Depression
“The undoing of Middle America is the great secret tragedy of our times. For shining a bright, unwavering light on the unfolding disaster, Carr and Kefalas deserve enormous credit.” —Thomas Frank, author of What’s the Matter with Kansas?
“Deft and detailed case studies bring the population to life. . . . The authors alert readers to this major change with clarity and compassion.”—Publishers Weekly, starred review
“A worthy contribution to a conversation we desperately need to have.”—Bill Kauffman, Wall Street Journal
“Deftly researched and written, this book is highly recommended for sociologists, educators, policymakers, and anyone concerned about the future of this country.”—Library Journal, starred review
Promises I Can Keep: Why Poor Women Put Motherhood before Marriage
Millie Acevedo bore her first child before the age of 16 and dropped out of high school to care for her newborn. Now 27, she is the unmarried mother of three and is raising her kids in one of Philadelphia's poorest neighborhoods. Would she and her children be better off if she had waited to have them and had married their father first? Why do so many poor American youth like Millie continue to have children before they can afford to take care of them?
Over a span of five years, sociologists Kathryn Edin and Maria Kefalas talked in-depth with 162 low-income single moms like Millie to learn how they think about marriage and family. Promises I Can Keep offers an intimate look at what marriage and motherhood mean to these women and provides the most extensive on-the-ground study to date of why they put children before marriage despite the daunting challenges they know lie ahead.
“A careful reading of the book should make policymakers scrap many of their “marriage incentives.” If they’re serious about improving the lives of poor children and family, they will focus instead on boosting opportunities where having a baby without sufficient means of support or a husband, makes all the sense in the world.” - The Crisis
“Ms. Edin and Ms. Kefalas decisively rescue the young welfare mother from the policy wonks an feminist professor who have held her hostage until recently, and in doing so overthrow decades of conventional wisdom.” – Wall Street Journal
“This is the most important study ever written motherhood and marriage among low-income urban women. Edin and Kefalas’ s timely, engaging, and well-written book is a careful ethnographic study that paints an indelible portrait of family life in poor communities and, in the process, provides incredible insights on the explosion of mother-only families within these communities.”– William Julius Wilson, Harvard University
“Promises I Can Keep is the best kind of exploration: honest, incisive, and ever-so-original. It’ll make you squirm, and that’s a good thing, especially since Edin and Kefalas try to make sense of the biggest demographic shift in the last half century. This is a must read for anyone interested in the tangled intersection of family and public policy.”- Alex Kotlowitz, author of There Are No Children