Breath Taking: A Memoir of Family, Dreams, and Broken Genes

by Jessica Fein

"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 the forthcoming  Days of Wonder.
At the age of five Jessica Fein’s daughter Dalia was diagnosed with a rare degenerative disease that would claim her life at 17. Before that moment came, and inspired by Dalia’s own insuppressible zest for life, Fein and her family would discover how to live in the present when the future can’t be fixed. In this heartfelt yet clear-eyed memoir, Fein maps both her journey to becoming an adoptive mom and the roller coaster ride of loving and caring for a terminally ill child, persevering when the simple act of taking a breath can become an act of courage. Through it all, she discovers the need to be both relentless advocate and calm presence, to show vulnerability as well as strength, and to allow joy to be louder than sorrow.
"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

Genres: Memoir, Nonfiction, Medical, Grief, Disability, Adoption, Biography Memoir

280 pages, Hardcover

Published May 7, 2024

Reviews

[Jen LaRussa · Rating 5 out of 5]

Breath Taking indeed.

Easily one of the most beautiful and moving books I have ever read. Jessica's incredible storytelling voice keeps you turning page after page, rendering things like sleeping and eating useless until you have gotten to the end. (Yes, I stayed up until 1am never ready to put it down.)

Jessica cracks open her heart, sharing with the world her story of loss, strength, family, but most importantly love. Her story is a reminder that with darkness, there is still light, with sadness, there is still joy, and with grief, there is still love.

As her father so beautifully wrote in one of his own novels, "Sorrow is a truth, but no more than hope; loss is a truth, but no more than love."

Thank you Jessica for bringing this incredible book into the world.

[Dawn · Rating 5 out of 5]

I'd like to give this book 100 stars. It is beautifully written by a mom needing to tell her story and her daughter's story but honestly ended up telling the story of her whole family through a journey they never expected.
I am thankful everytime for the bravery of parents to put into words their lives so similar to mine.
This mom perfectly expressed the ups and downs, the fear, the uncertainty, the sadness and grief but most importantly the beauty and the joy of this life we live.

[Barbara Newman · Rating 5 out of 5]

Heart wrenching. Heart opening. Brilliant and Brave. Breath Taking is a love story of grace, resiliency, loss, and what it means to live life fully present, with joy, even when things are impossibly hard.

As I was reading the pages of Jessica Fein’s beautifully crafted memoir, I felt many emotions. What rises to the top is immense gratitude. This book is one big teachable moment for all of us--a lesson in perspective, in how to look at life, and in how to love with a whole heart. As sat with her words, it’s as if I was sitting with a wise and incredibly strong best friend. We laughed, and cried, and mostly, I witnessed. It is not that often I experience such intimacy with an author. This book is a treasure and a gift. It is a story I will not forget for a very long time, if ever.

[Hannah Sachs · Rating 5 out of 5]

This book reminded me that I am not alone in my feelings. There are so many others that have experienced medical hardships and I am not alone. I needed this book more than I realized when I started it.

[Esta Montano · Rating 5 out of 5]

"There's one other piece of information I need you to understand." He [the doctor] looked at me, glanced at Rob, then back to me. "This disease is degenerative, and there's no cure." Most of the appointment was a blur, but that word stuck out and echoed in my head: "degenerative." 
 
What would you do if, without a warning, your world turned upside down? With grace, candor, courage and above all, love, Jessica Fein tells her story in this unputdownable and moving memoir.  
 
Loss had been a constant in Jessica's life and early in the book we witness the death of her sister, an event that devastated Jessica. Following her marriage to Rob, infertility became a new loss, until the couple decided to adopt three children from Guatemala. Among them was Dalia, their adored daughter. There was something off about Dalia's gait, and there were small cues that led Jessica to suspect that her daughter's health was not quite typical, yet it was not until a visit to a doctor that it was confirmed that Dalia had MERRF syndrome, a rare disease of the body's mitochondria, that would ultimately take her life. 
 
Jessica and Rob embarked on a full-time journey of tending to Dalia's health, ensuring that she could live her life at home and to the fullest, despite the limitations-- including hearing loss, the inability to breathe without a tracheotomy (hence, a tube extending from her throat, robbing her of the ability to speak), confinement to a wheelchair, and other eventual impediments to Dalia's well being. Jessica and Rob continued working, tending to their other two children, all the while unapologetically advocating for the best outcomes for Dalia, who had an indomitable spirit and inner radiance.  
 
Although Jessica and Rob falter, they never fall. Jessica is remarkable-- in fact, I met her at the gym and although she talked about Dalia, it was hard to imagine exactly how challenging this loving family's life actually was.  
 
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!

[Tami · Rating 5 out of 5]

This book is a very emotional read. It is the story of a couple, Rob and Jessica, who are unable to have children and decides to adopt. They adopt three children from South America at different points in their life. Years after they adopt their daughter, Dalia, they learn that she has an incurable mitochondrial disease. As the disease progressed, her mobility, faculties, and ability to breath weakened, eventually causing her death. We are taken on the journey that Jessica and Rob had to go through from the beginning when they suffered through difficulties with pregnancy to the end when Dalia passes away. It was an enlightening look at what families with an ill child has to do on a daily basis. We see the fear, sorrow, hope, and at time, the joy, that ebb and flows throughout their lives. It was a difficult read, but one worth the time.

[Cindi · Rating 5 out of 5]

From the first page, I felt instantly immersed in a world I know all too well. Reading “Breath Taking” felt like reading my own story about loss and life.

As a mom to a medically rare child, I could relate to so much of Jessica Fein’s journey. This book is beautifully written and completely captivating. It made me cry, but it also made me smile. Fein captures the essence of hope, anticipatory grief, and facing life’s toughest moments with courage and determination.

“Breath Taking” is a moving read that truly hit home for me. It’s a heartfelt story that reminds us of the resilience and strength we all have within us, especially when navigating the challenges of raising a medically unique child.

[Katie Fahey · Rating 5 out of 5]

I absolutely loved this book...definitely "breath taking"! It was not only a quick and easy read but it hit ever emotion. Not only did my heart go out to the author and her family, but it also shows that no matter how difficult you might be dealing with something, someone else is always struggle 10x more than you. I highly recommend you pick up this book and read it!!

[Debbie · Rating 5 out of 5]

Beautiful writing, the true story of a mother’s love, Jessica thank you for sharing your heart.

[Esra Tasdelen · Rating 5 out of 5]

Reading this book was like reading a slightly different version of my own story. I underlined so many passages. I felt less alone. Jessica's love for Dahlia and all of her children shines through the whole book, and I am grateful to her for sharing her story and reminding me of what matters the most: The joy that our special, unique and rare children bring into our lives, outshining the darkness, proving that love wins in the end, no matter the outcome.

[Tina Werner · Rating 5 out of 5]

How much tragedy can one person endure? Breath-Taking is a testament to the unbearable weight of love, to the quiet resilience of a family who refuses to let go. I could not put this book down. I fell in love with Dahlia—fierce, fragile, luminous. The world was a better place with her in it.

[Allison Grinberg-Funes · Rating 5 out of 5]

Get a good cup of tea or hot chocolate, your favorite snack, and cozy up - the only reason I put this book down is because I'm obligated to go to my job.

Life is hard for the regular person but for Jessica Fein and her family, "hard" doesn't even begin to cover it. Several times throughout this story, I found myself exclaiming, "You've got to be kidding me!" as the Fein family was faced with another heartwrenching challenge.

The author tells the story of becoming a mother to her three children and the family's experience after learning that Dalia, her daughter and oldest child, had a degenerative mitochondrial disease. Few families experience what the Fein family did and the author does a fantastic job of introducing the reader to all members of the family. Throughout the story, I could easily see Dalia's laugh, her infectious joy, and the protection and pride of Theo and Jonah. Rob, her husband, anchors the reader as much as he does the author, who is a steadfast protagonist, demonstrating grace and perseverance from beginning to end.

This is a story of life's challenges and life's love and the coinciding joy and grief that come with it all. Just as your heart begins to crack, pages later, you'll find it held together by the joy emanating from the story. The hope the family maintains carries you through each turn of the page.

If you are looking for a happy-go-lucky memoir, this is not the book to pick up. But if you are brave enough to endeavor on a journey that will leave you with a deep appreciation of the ups-and-downs of a life, both of an individual and of a family, then this is the book for you. I urge you to take stock of your life before you read it, because afterward, I guarantee your assessment will be forever altered.

[Christine Tippett · Rating 5 out of 5]

This summer I had the opportunity to read Jessica Fein’s new book, Breathtaking.

It’s a departure from what I usually read - I like to keep it light, due to the fact that life is sometimes heavy. But knowing Jessica is a fellow rare disease mom, I jumped in. Jessica’s memoir is beautifully written and many of her reflections resonate with me.

When describing her daughter Dalia’s diagnosis, Jessica relates that “We were given life-changing news, but our lives hadn’t changed.” Been there, struggled with that.

I can’t identify more with her realization, “this was what life felt like, the joy and the sorrow weaving in and out—sometimes taking turns, sometimes twirling together, each more powerful because of the other.” I think about this paradox all the time – the highs and the lows and how it’s OK to feel sadness at the same time as joy.


Jessica states, “I’d need to decide whether the blessing or the curse defined me.” I too walk that line. I hope I continue to choose the blessing to define me.

I’m not going to lie - I sobbed through the last few pages of Jessica’s story, but I’m glad I did. The book is a love story. Jessica’s story about Dalia reminds us all to live in the present.

[Debra Block · Rating 5 out of 5]

I was fortunate enough to get an advanced copy of this extraordinary book and read it in one day. I was captivated by both the story and the author's ability to weave pain, joy, wisdom and HUMOR so well. Ms. Fein draws you in powerfully and intimately into the broad contours and small details of her world where she refuses to be defeated by the cruelties that life has in store for her. She centers the reader on the rare disease of her daughter, Dahlia, and weaves a tale of resilience and hope without being cloying or saccharin. It is a tour de force, both as a narrative and in its ability to bring us into her world and the lives of those she loves.

[Marcy Bernstein · Rating 5 out of 5]

Dahlia's presence, joy and resilience were showcased beautifully in this book. I feel like I know her, and wish I could have met her. The author, Dahlia's mother, Jessica Fein, painted a realistic picture of what life is like in the home of someone living with a rare disease. As I read this book, I felt the love, hope, hard work and disappointment. There are so few books out there that get so raw about the intricacies of mitochondrial disease. This book is needed to honor Dahlia and her family, while also creating awareness about life with mitochondrial disease.

[Liz · Rating 5 out of 5]

I knew this book would completely absorb me and I was right - which is why I dedicated an entire day to read it cover to cover. Jessica’s writing is direct, concise, and evocative. While her narrative centers on her daughter Dalia’s diagnosis and life with a rare disease, Jessica illuminates the powerful personalities and roles of many others in her family in a way that connects the reader to generations of love, endurance, and perspective.

[Sunday Dutro · Rating 4 out of 5]

Breath Taking by Jessica Fein is a fast-paced, emotional, and informational nonfiction book about a family raising a child with a deadly disease. If you love memoir, you may be disappointed as this doesn’t read like a memoir so much as an accounting of a life. Well written and interesting, I do recommend it to nonfiction readers.

[Karen Flood · Rating 5 out of 5]

Jessica Fein’s Breathtaking: A Memoir of Family, Dreams, and Broken Genes is a remarkable story of perseverance and joy through loss. 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. Fein tells the story of her daughter Dalia’s struggle with a rare genetic disease that eventually took her life at age 17. It is a story of how Fein and her family balance the pain and despair of this diagnosis with a celebration of the joy and beauty that life brings. As Fein writes in the book’s epigraph: "On March 11, 2022, my daughter Dalia took her last breath. But that’s not what this story is about. It’s both the oldest story in the world, and it’s one you’ve never heard before. This is a love story." Indeed, the book is a testament to the power of love and the inseparability of love and grief. This memoir answers a series of questions: How does a person whose life “wasn’t perfect, but it was close” bear unbearable loss? (Outside of the central loss of her daughter, Fein also endures an unending series of losses of people close to her, so much so that her kids’ pediatrician refers to her as “Job,” as in the Biblical figure.) How does one shift one’s mindset from planning and fixing and problem-solving to living in the “Present Tense,” as one of the chapter headings allude to? And how can one learn to breathe through pain and uncertainty? “Breathtaking” is a central theme of this book, tying together Fein’s daughter Dalia’s respiratory difficulties that eventually lead to a reliance on a ventilator, Fein’s sister’s struggle with lung cancer, and Fein’s own journey towards finding ways to breathe through her fear. Ultimately, Breathtaking is about the simultaneity of darkness and light: Where there is fear, there can also be peace; where there is deep sadness, there can also be joy. As Fein’s father wrote decades earlier, “Sorrow is a truth, but no more than hope; loss is a truth, but no more than love.” Fein carries on the wisdom of her father, by offering up her poignant reflections on her experiences. This book is for anyone who has undergone or anticipates loss, as well as for anyone looking to deepen the experience of their life by focusing on the beauty of individual moments.

[Catherine Shields · Rating 5 out of 5]

I was eager to read the ARC for Jessica Fein’s book, BREATH TAKING A MEMOIR OF FAMILY, DREAMS, AND BROKEN GENES, a story that spoke of loss. Some of the passages in this beautiful book reminded me of The Year of Magical Thinking by Joan Didion, and many spoke to me about events that have happened in my own life.
For years, Jessica and her husband struggle with infertility, and eventually end up adopting two boys and a girl. However, this family’s lives are upended when daughter Dalia is diagnosed with a rare mitochondrial disease. The author uses the metaphor of an umbrella to describe what they are facing: “walking through your life with an umbrella over your head. You might go to work or to a party or to the movies, you might forget for a little while, but there’s always a bit of a dark shadow with you. Now, with this new diagnosis, the doctor had handed us another umbrella. The shadow was more ominous, but it was also a lot murkier.”
Along the way, greater challenges follow. There’s the death of the author’s siblings and parents, yet Jessica refuses to be defeated as she continues to find a cure for her child. The passage that greatly resonated for me was when she wrote: “I was also losing my belief that if you wanted something desperately enough, if you put all your energy and ingenuity into getting that thing, you could make it happen—a belief that even infertility and Dalia’s MERRF diagnosis hadn’t burned out of me.”
There are many lessons one can learn from the difficult stories that we memoirists share. I experienced a sense of comradery when I read this passage: “Joy and love outshine the darkness and the pain. Dalia knew that intuitively, and I felt I’d get there too. “
Although filled with sorrow and hope, BREATH TAKING is a poignant, inspiring read and I highly recommend this book.

[Brittney Melvin · Rating 5 out of 5]

The quote on the front of this book says "a master class in how to be a human", and I couldn't agree more.

Jessica shares her story with remarkable grace and honesty, and by doing so, the reader is left with a deeper understanding of what's most important. Celebrating joyful moments with the people you love most.

The author is candid about her experiences, including infertility, the loss of her original family, her daughter's diagnosis, and her daughter's passing.

But amidst the heartbreak and grief, there's so much joy and love in this book.

It was wonderful to read about Dalia's free spirit, Jessica's dad's strength, her sons' kindness, her lovely relationship with her husband, her bond with her sisters and mom, and stories that included the many people in their support system. (The section with Shawna was one of my favorites)

I don't typically read memoirs because I don't always love the style/format, but this book was beautifully written and meticulously arranged. Although it's a completely true story, it flows like a novel.

I highly recommend this book to anybody looking for a story with family at the center of everything. 

[Dana Snyder · Rating 5 out of 5]

It is a privilege to get to know this family. "Breath Taking" is warm, funny, and honest. Jessica candidly shares herself with vulnerability and incredible strength. You won’t want to put this book down and you won’t want it to end.

As I finished the book, the Serenity Prayer flooded my thoughts.
“God, grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.”

It is rare to encounter someone who gracefully lives with sorrow and joy braided through her day-to-day life. Jessica’s memoir is a lesson for all of us. She embodies what so many people struggle to find – the ability to choose joy even when there is so much sadness.
I want to bottle up Jessica’s approach to life, and share it, or prescribe it to everyone I know both personally and professionally.

Dalia’s sparkle will live on in every person touched by Jessica’s beautifully written story.

[Zibby Owens · Rating 5 out of 5]

This memoir recounts a family's journey through infertility, international adoption, and the challenges of raising three children from Guatemala, including their daughter Dalia, who was diagnosed with a rare degenerative disease. The author shares the difficult experience of caring for Dalia, who required round-the-clock care until she passed away at the age of 17, and the impact it had on her marriage and other children.

The book tells the story of how the author and her husband created their unconventional family and the challenges they faced. It also delves into the hardships of caring for a chronically ill child, including the difficulties of traveling and participating in family events. The memoir explores themes of grief, sorrow, and loss, while also conveying the presence of light, laughter, joy, and hope in the midst of it all.

To listen to my interview with the author, go to my podcast at:
https://zibbymedia.com/blogs/transcri...

[Michele Dawson Haber · Rating 5 out of 5]

Breath Taking touched my heart in so many ways. Jessica deftly takes us through a roller coaster of emotions, allowing us to get to know each of her incredible family members, especially Dalia. At the same time as being fully immersed from the moment I started reading, I maintained a constant awareness that this was no ordinary family, no ordinary mother. How much heartache can one woman stand? Well, if you're Jessica, quite a bit. Her story has me thinking quite a lot about how some people can remain strong, focused, and resilient in the face of unfathomable tragedy and others just collapse. I tend to think I'm in the latter camp, but who knows? Stories such as Breath Taking show me how strong our minds are and that we can choose to fall apart or not. Jessica's story will stay with me a long time and her example gives me something to aspire to. I recommend this book without reservation.

[Lynn M · Rating 5 out of 5]

Jessica Fein has written a beautiful memoir of finding courage, grit and unending love in the face of incredibly difficult life challenges. Jessica writes about her adoptive daughter being diagnosed with a rare degenerative disease which ultimately claimed her life. Jessica shares her ups and downs while finding strength, bravery and fearlessness. She speaks lovingly of her daughter while letting the reader in on the heartbreaking story of her daughter's struggle. This is an honest and revealing look at being the care-taker, advocate and rock of resilience in an unfathomable situation. Jessica Fein's book Breath Taking: A Memoir of Family, Dreams and Broken Genes will inspire you, teach you and encourage you with a powerful message of endurance, care and joy. I highly recommend buying and reading this book.

[Rachel Belliveau · Rating 5 out of 5]

Breath Taking is a profound exploration of life's delicate balance of finding joy within tragedy. What makes this book stand out is Jessica’s honest, candid, and warm narrative style. She manages heavy themes with a light touch, allowing the reader to find solace and even some laughter amidst true sorrow.

Despite the heartbreak the memoir does not allow despair to overshadow the narrative. Instead, it weaves laughter and light-hearted moments reminding us that life, even at its most painful, is a gift always worth embracing.

I would highly recommend this book to anyone. It's not just a story, but a powerful reminder of the impact each of us can have on each other's lives, and the unexpected joy that can be found even in the darkest times. Grab a copy, and be prepared to laugh, cry, and be inspired by this beautiful memoir.

[Dr. · Rating 5 out of 5]

This beautiful book is a triumphant song of love for Jessica Fein's beloved daughter, Dalia, and testimony to the best in human beings in the face of some of life's greatest challenges. This book is riveting, eminently readable, and speaks to all about the preciousness of life, uncompromising commitment, and the embracing and celebration of true devotion to those we love. Beyond sharing the story of Dalia and the road their family traveled, it is about truly seeing others and the majesty of being deeply and thoroughly seen and loved, no matter how long or short the time one is present on this earth. Thank you, Jessica, for the open and fearless way you reveal such a painful journey, and for sharing amazing Dalia with us. You honor her and keep her present in our knowing of her indomitable spirit. This book is breathtaking. It was an honor to read.

[Amy Asherah · Rating 5 out of 5]

I did not expect to laugh out loud (more than once) reading a memoir about tragedy, specifically the discovery and treatment of Jessica Fein's daughter's degenerative disease, simultaneous with several deaths in their family. As chaotic and heart-breaking as the journey is, Fein's reassuring voice keeps hope and love buoyant. The clarity of her writing and the aptness of her metaphors makes a swift and engaging read. As a parent, I admired Fein's utter honesty about the boundaries she would cross for her children. I rooted for her all the way, even knowing from the beginning how the story would end.

[Karen Mccalley · Rating 5 out of 5]

Breath Taking is aptly titled because I didn't just read this memoir, I inhaled it. From the first page to the last, I was entranced with Jessica's storytelling. As she details the many tragic losses in her life, she manages to make the memoir more about joy than sorrow. This ability to find light in even the darkest times is awe-inspiring, and it transforms what could be a very heavy read into an inspirational one. While I was moved by the heartbreak, I was even more touched by Jessica's resilience and the incredible love she shares with her family and friends -- a love that has truly sustained her. In a time when it is so easy to dwell on all that is broken and sad in the world, Jessica shows us through the story of her beautiful Dalia that we can choose gratitude and hope instead.

[Liat Deener-Chodirker · Rating 5 out of 5]

Such a beautiful book! Jessica Fein finds the perfect balance of infusing humor and lightheartedness while writing about such pain and heartbreak. This book touches on so many themes and is relatable truly for everyone.

Has something in your life not gone the way you expected? This book is for you.
Have you started a family in a non-traditional way? This book is for you.
Have you watched someone you love struggle with life altering or terminal illness? This book is for you.
Do you love deeply? This book is for you.
Do you enjoy moving well written stories? This book is for you.

[Lara · Rating 5 out of 5]

Jessica's journey is remakable in many ways. She has been forced to survive repeated intolerable losses, which in themselves are difficult to fathom. Her boundless resilience is striking and inspiring. For this lesson alone I found the book life-altering. Yes; when life gives us lemons we all hope we'd be able to eek out a little lemonade, but Jessie has managed to open a lemonade manufacturing plant while dealing with heartwrenching grief. May this book help others for whom experiencing joy in the midst of grief seems impossible. Jessica Fein shows us how it can be done. A must read!