Breath Taking: A Memoir of Family, Dreams, and Broken Genes
"A master class in how to be a person." --Joanna Rakoff, bestselling author of My Salinger Year
"Astonishing...one of the most moving memoirs I've read." --Caroline Leavitt, best-selling author of With or Without You and Days of Wonder.
In Breath Taking: A Memoir of Family, Dreams, and Broken Genes, Jessica Fein takes readers on a powerful journey through the profound joys and heart-wrenching challenges of love and loss. At the tender age of five, Jessica's daughter Dalia is diagnosed with a rare degenerative disease, casting a shadow of uncertainty over the family's life. Inspired by Dalia's unyielding spirit and irrepressible zest for life, Jessica and her family embark on a remarkable odyssey of love, resilience, and self-discovery.
From the initial shock of diagnosis to the relentless battles against the ravages of disease, Jessica navigates the complexities of parenthood with unwavering courage and love. As each breath becomes a precious act of defiance against fate, Jessica learns to embrace the present moment with fierce determination, finding solace in the small joys that illuminate even the darkest of days.
But Breath Taking is more than a story of loss and grief; it's a testament to the indomitable human spirit and the transformative power of love. Through laughter and tears, Jessica discovers the delicate balance between advocacy and acceptance, vulnerability and strength. Along the way, she confronts her deepest fears, finds unexpected allies, and discovers the resilience of the human heart.
With poignant insights and unflinching honesty, Jessica's narrative transcends the boundaries of tragedy to offer a beacon of hope for anyone facing life's most daunting challenges. Breath Taking is a masterclass in resilience, a testament to the enduring power of love, and a celebration of the extraordinary courage found in ordinary moments.
"More than an honest and humorous memoir, Breath Taking can be the guide star so many seek when life hands them more than they ever imagined they could endure." --Daniel DeFabio, rare disease filmmaker and Co-founder of The Disorder Channel
"A story of relentless heartbreak met with wit, strength, and resilience." -Jennifer Weisel Bailey, ELLE Magazine
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Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes and host of the "I Don't Know How You Do It" podcast. She's a seasoned media contributor, with forums including Newsweek, Psychology Today, The Boston Globe, HuffPost, Scary Mommy, Zibby Mag, Kveller, and more. Her work encompasses hope and humor, grit and grace -- the tools that make up her personal survival kit.
PRAISE for BREATH TAKING:
"This story truly matters and people need to hear it. Breath Taking is a remarkable celebration of resilience, and a true testament to strength, love, and survival. It shows us that there's always a path forward even when it's too dark to see. You'll probably laugh and cry, and you'll for sure be inspired." --Victoria Arlen, TV host and Paralympic gold medalist
"A moving, honest, and emotionally powerful story of family dedication, pain, and love. This is a book that is both wrenching and inspiring, all at once." --Tova Miris, author of The Book of Separation
"An epic story of love and resilience." --Kirkland Hamill, author of the critically acclaimed memoir Filthy Beasts
"Jessica throws aside pride and pretense expressing with generous vulnerability the heartbreaks and hopes that come with raising a child with a rare disease. More than an honest and humorous memoir, Breath Taking can be the guide star so many seek when life hands them more than they ever imagined they could endure." --Daniel DeFabio, Co-founder Disorder: The Rare Disease Film Festival, Co-founder The Disorder Channel. Advocate.
"A story of relentless heartbreak met with wit, strength, and resilience, Jessica Fein's memoir reminds us that optimism, perseverance, and ultimately acceptance are the keystones to surviving life's curveballs. When the choices are curling up in the fetal position or facing adversity head-on, Fein has chosen the latter in spades. Her story is the perfect illustration of how we control nothing in life but our actions and attitude." --Jennifer Weisel Bailey, Entertainment Director, ELLE Magazine
"In Breath Taking, Jessica Fein finds the words to convey the deepest truths of being human and then shares them with vivid candor as if over a cup of coffee." --Rabbi Susan Silverman, author of Casting Lots: Creating a Family in a Beautiful, Broken World
"Jessica Fein is that rare writer who can defuse sorrow with her sense of humor." --Dan Zevin, Thurber Prize-winning humorist and award-winning humor columnist for The New York Times
"I have never met Jessica Fein. I have never met her beautiful and resilient daughter, Dalia. If I was asked that conversationally famous question of who I'd want to have dinner with that I have never met, it would be tough to decide between Jessica and Dalia. I do know it would be one of these fabulous women.
'Breath Taking; A Memoir of Family, Dreams, and Broken Genes' by Jessica Fein will remain in my heart forever. The story of her daughter's progressive disease, myoclonus epilepsy with ragged-red fibers Syndrome, or MERRF Syndrome, ravaging her body and her family's lives, is told with honesty, love and even appropriately placed humor. Outside of living with a rare disease, there are several other relatable topics threaded within this memoir - adoption, infertility, losing a parent, loss of a sibling and yes - the death of a child. I experienced intense therapeutic cries as I read. Jessica writes, 'We're the ones just like so many others - the ones who got dealt a horrible blow and who try every day to do our best and rise to the occasion.'
The willingness of Dalia's family to roll with the punches is a crucial part of this plot. Their attitude changed from wanting to move mountains to "fix" their daughter/sister to re-configuring their lives to make everyone's lives meaningful in their current state. The reader will see resilience in this family through infertility and family loss, but the most significant example is how they learn to adapt through all of Dalia's obstacles and put their love for each other above everything.
Mother's Day is upon us. I urge you to read this book. Don't be intimidated because Jessica's daughter is no longer with us. This book is enriching. The raw emotion is etched in every page. I was so moved reading about how Jessica realized her mother-daughter days will never look similar to when she was a kid spending time with her own mother. She is so honest about her feelings about life looking different than what she expected. Lots of women can relate to these feelings from a variety of angles.
Eventually Dalia was using a feeding tube everyday to consume her necessary nutrients. This created many obstacles in her life. The fan-favorite holiday of Halloween is a prime example of Jessica leaping over any hurdle to make Dalia comfortable and feel like a typical kid. Hours before the festivities began, Jessica went door-to-door delivering non-edible treats to her neighbors so they'd have something Dalia could enjoy as she arrived at their doorstep. Jessica is the pinnacle of mothers in every way.
'Shouldn't there be a ceiling on suffering?' This is a quote from the book that brought tears to my eyes. These words have come out of my mouth too many times throughout my life. I've experienced an abundance of suffering and have witnessed it too frequently in my loved ones lives. It's an important concept to talk about. A concept that often feels too taboo to discuss.
This book is Jewish at its core. The honor and meaning that went into planning Dalia's bat mitzvah is a major plot point, and made me want to be a better person as I read through those pages. The lyrics of l'chi lach dazzle the pages. Dalia will always be a blessing to those she grew close to in this physical world. She will also create meaning to those fortunate enough to read Breath Taking.
It's easy to cheer for Jessica as a mother, as a daughter, as a sister, as a wife and as a Jewish woman." --Cleveland Jewish News
FIVE STAR RATINGS ON GOODREADS--44 and counting!
"This book is beautifully written and totally engaging. It made me cry, but it made me smile too. This is a book about hope, anticipatory grief, and about responding to the circumstances of one's life with bravery and determination. It is a must read!"
"Easily one of the most beautiful and moving books I have ever read."
"Fein's light-hearted and often funny narrative danced me through each compelling chapter; lifting me beside her in celebration and twirling me into crushing heartbreak."
"Breath Taking is a rare book that pulled me in and held me long after the final page."
"It is a page-turner, a book you can finish in one sitting. It is gripping in its drama and surprising in the humor and lightness that exists alongside the pain."
