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.

“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.

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?