Degrees of Difficulty

by Julie E. Justicz

Love is the foundation of family, but at what cost? After Ben Novotny is born with a rare chromosomal disorder that produces profound mental disability and brain-racking seizures, his parents, Caroline and Perry, and their two other children are asked to give more than they have. When Ben is an infant, the care and the fear are constant. The demands and pressure only mount when he and his older brother and sister become teenagers. Ben needs even more from his family, just as Hugo, the athlete and the “good soul”, and Ivy, the ambitious rebel, must carve out their own identities. Over the span of decades, this deep and understanding novel follow each family member, Perry and Caroline, Hugo and Ivy, as their lives diverge. In Degrees of Difficulty, grace is found amidst heartache, love finds a way after loss.

Genres: Fiction

300 pages, Paperback

First published October 1, 2019

About the author

Born and raised in England, Julie Justicz moved to the Bahamas when she was ten, and then to the United States as a teenager. She earned a law degree from the University of Chicago and received an MFA in creative writing from Vermont Center for Fine Arts. As an attorney and advocate, Julie currently works on civil rights issues in Chicago. She lives in Oak Park, Illinois with her spouse, Mary, and their two children.

Reviews

[Angela M · Rating 5 out of 5]

I almost always read at night before I go bed, and every once in a while I wake up thinking about the story, the characters. This was one of those books. I’ve read a lot of sad, emotionally charged stories, but they don’t alway bring me to tears. This one did. This is the painful and honest journey of a family facing the difficulty, the day to day challenges of a special needs son and brother and the toll it takes on their lives and on their relationships with each other. This family was in crisis from the beginning of the book and I knew this would be an emotional story, but I had no idea how honest and heartbreaking it would be or how well written this debut novel would be.

Fourteen year old Ben Novotny suffers frequent and violent seizures and has a mental disability due to a chromosome disorder. A few years before, his parents decided that the best thing for Ben and for the family would be a home, an institution that could care for all of his needs, but it was never as easy as that. As the book opens, Perry Novotny , his father is taking him home from yet another place, one of many, that believes Ben could be a danger to others and they no longer can care for him. Perry, the ever optimist is sure he’ll find a new place. Caroline, his mother, a university professor of Shakespeare, is sure that she is just not able to care for Ben at home. It’s is excruciating physical and emotional stress and she is losing herself to drugs and alcohol. The 24/7 care has left her spent and has interfered with her professional life and her relationship with her other children. Ivy, Ben’s seventeen year old sister just wants to get away from it all, her family and her home and is just not tolerant of Ben. She immerses herself in her studies and goes away to school looking for a normal life. Hugo, the middle child is 16 and bless this boy has a special bond with Ben and is capable of giving of himself, his time and attention and his love to Ben when the rest of them can’t cope. I loved Hugo right from the start, my favorite character and in many ways for me, this was Hugo’s story. The unspeakable happens and I don’t want to give away the plot, but will say it’s heartbreaking and I was not expecting it to happen. The narratives alternate among all of the family members and we become privy to their honest feelings, desires and later regrets and the shape of their relationships with each other. Every one of them moved me.

It’s about unconditional love, about guilt, about hope, about the possibilities of redemption when these seem impossible. It’s about the difficulties and challenges that perhaps many families face. I read this in one day because I couldn’t leave it to another day to find out the fate of this family. It’s so well written in theme, in characterization, in the emotional hold that Justicz had on me from start to finish. This will be on my list of favorite books of this year and she will be on my radar for what she may write in the future.

I received an advanced copy of this book from Fomite through NetGalley.

[Christine · Rating 5 out of 5]

4.5 stars rounded to 5 stars

My grandmother raised a Down’s syndrome child who had the mentality of a three-year-old. She took care of his every need for over thirty years until her sudden death of a stroke at age 73. Tommy was a handful. Though he had a really sweet streak, he was also very unpredictable and required almost constant attention. Most of Tommy’s five siblings were adults and out of the house by the time he was born, and my grandfather did not participate in hands-on caretaking. I suspect the resulting toll taken on my grandmother contributed to her early demise. My interest was piqued when I saw this book as I always wondered how other families fared when there was a profoundly compromised family member to care for.

Degrees of Difficulty takes place from 1991 to 2008 and is told from the perspectives of Ben’s mother, father, brother Hugo, and sister Ivy. Ben has been diagnosed with profound mental retardation and a seizure disorder. Each member of his family reacts to him in a very different way. Furthermore, Ben and the challenges he presents significantly impact the life of each family member in a disparate manner. There is much introspection, angst, guilt, regret and sadness presented in this novel. The family struggles mightily to stay as a family as each member deals with his or her own issues as influenced by the needs of Ben.

I thought this book was extremely well written and thoroughly captured the plights of these people who are doing their very best to cope with the situations they find themselves in. My heart especially went out to the dad and to the brother. A couple of the family members, namely the mom and sister, are not terribly likeable, but I remained highly interested in how they would handle things.

The character development is just outstanding, and over the years, one can see the growth in each family member. Keeping with reality, there is no big red bow at the end, but the reader is left with a feeling of hopefulness. My only criticism is that the end was too sudden for me. I turned the page to see what was going to happen next and there were the Acknowledgments. The book is short and I wish the author had taken the liberty of taking her time with the wrap up. This is what cost the novel ½ star, but it is a no-brainer to round up to the maximal 5 stars.

I strongly recommend Degrees of Difficulty to everyone interested in a highly realistic portrayal of an average family dealing with extraordinary issues. Well done, Ms. Justicz.

My thanks go out to Net Galley, Fomite Press, and Ms. Julie Justicz for granting me an ARC of this novel. Opinions are mine alone and are not biased in any way.

[Cheri · Rating 5 out of 5]

Having a child, or children – ordinary, healthy children - can rob parents of sleep, and peace of mind, schedules become compromised and life becomes fraught with tension – but there are also moments of joy and the knowledge that these days will pass, this phase will end, and most will grow up to have their own dreams, and to take the steps to ensure those dreams come true. When Perry Novotny and his wife, Caroline marry, and have a daughter, Ivy, and son Hugo life goes on as usual. When their youngest son, Ben, follows two years after Hugo’s birth, things begin to unravel as he ages, a chromosome disorder that imposes limits on what Ben can do, or be expected to do. Ben understands more than he can relate with the one sound he can make, but with an IQ of 32 at the age of fourteen, his speaking vocabulary is limited to “Guh.” His closest bond is with older brother Hugo, and Hugo is there for him whenever possible. As time passes, and Ben grows older, bigger, and more capable of badly hurting others, Caroline is barely holding herself together, Perry seems oblivious to these life changes within the walls of his home, and daughter Ivy is just angry and withdrawn. Time passes and tensions rise, if almost imperceptibly.

This story begins in April of 1991, as Perry is picking Ben up at yet another facility, one where he’d dropped Ben off six months earlier. They were concerned about the potential for “serious harm” to the other students, after Ben had created problems. Again. Perry has always tried to focus on the potential solution rather than the problem, but they are running out of alternative schools to pursue, and his eternal sunshine is beginning to cloud over, as each family member’s personal problems seem to create a bigger distance between them. The exception being the bond between Ben and Hugo, whose bond only grows, even as the more wrapped up in herself that Caroline gets, as well as Ivy who is just counting days until she can leave the nest for college. As Perry drives away, his thoughts turn to the day he’d checked out the Lake Norman Residential School, he remembers telling his wife that it was ”A bucolic campus. The lake nestled between two red brick buildings, a backdrop of blue-green foothills. His words were now distant and foggy as the Appalachians. Perfect for Ben…”

A very affecting, beautifully written debut novel, my heart broke for each member of this family. The stress, and distress endured by this family is understandable, and make for a tender, poignant read, one I will not soon forget. In the end, the love we lose might break us, even temporarily, but it is the love we give that redeems us.



Pub Date: 01 Oct 2019


Many thanks for the ARC provided by Fomite

[Kelly Kosinski · Rating 5 out of 5]

Excellent book about a family who has a a special needs child/sibling. The families that raise these children have to have endless patience and love. He or she has to come first and that is hard for everyone to understand and deal with.

I highly recommend this book. Sad but outstanding.

[Laurie · Rating 5 out of 5]

This is a wonderful book! I was immediately drawn in to the life of this family, and I was riveted as I followed their story. The characters jump off the page as if they are real flesh-and-blood people. I truly felt for what they were going through and related to their emotions. The writing is lovely, so expressive and sensitive.

[Bonny · Rating 4 out of 5]

Degrees of Difficulty is primarily a book about a falling-apart family. Parents Perry and Caroline and children Ivy and Hugo are all falling apart because of their child and sibling, Ben - born with a chromosomal disorder that means he is unable to speak, suffers frequent severe seizures, and requires constant care. Father Perry is an optimist, continually searching for the residential home that will be able to house Ben for more than a few months, but mother Caroline is mainly exhausted by providing Ben's care with no time or energy left for her life as a professor. Ivy just wants to escape the house, head to college, and forget that she even has a family that includes Ben, but Hugo has both the ability and the desire to connect deeply with Ben. His unconditional love and care gives Ben a life of some sort, but may also prove to be his own undoing.

Each family member (with the exception of Ben) narrates their own story as their lives revolve around Ben and diverge from each other in different ways. The Novotny family's story is a sad but honest one, that I think portrays the degrees of difficulty and many incredible challenges involved in caring for a special needs child. Degrees of Difficulty is about sadness, pain, disappointment, and loss, but also love and grace.

Thank you to Fomite and NetGalley for providing me with a copy of the book.

[Lauren Archer · Rating 4 out of 5]

This is simply beautiful story that will break your heart. This emotional rollercoaster is well worth the read. I look forward to seeing what else this debut author writes.

For my full review, visit my blog at: http://obsessedbookaholic.com/2019/09...

Thank you NetGalley and Fomite for an Advanced Reader’s Copy of this book in exchange for an honest review.

[Pam Hurd · Rating 5 out of 5]

Wow, wow, wow, what an emotional story! I felt it all with each character from the very beginning. Excellent writing. So well told. I am very thankful for the ending.

[HollyLovesBooks · Rating 5 out of 5]

I chose this book specifically because of my proximity to the subject and it hit home for me. Spot on. This is a well written book about a 14-year-old boy with severe neurological and developmental disabilities and his family who must adapt to living with this reality. I work with people like Ben everyday through my work and see the difficulties families go through. I also have a special needs child, who is not nearly as ill as Ben but at times seems to have also needed all the oxygen in the room. It is a draining and difficult situation for an entire family. One that seems to either break you or make you stronger. I felt like this was a realistic look at the impact really any serious, chronic illness can have on a person and their family. Some of the family members handle it one way and some another. Realistically this ebbs and flows over time, with some siblings needing more attention at times than others. This book did a terrific job in showing a realistic, rather than glorified view of this life and the difficulties within it. There are rewards, that are glamorized on Hallmark specials, and many more hard times and challenges that are overlooked and simply unknown by the outside world. From the seriousness of the medical issues to the communication problems to the guilt and heartbreak with trying to place someone in a group home. The list is endless.
This is a much appreciated work that should be highly recommended for families with special needs individuals, to know that they are not alone.
#DegreeOfDifficulty #Netgalley ##Fomite #JulieEJusticz

[Linda Piazza · Rating 5 out of 5]

While I usually prefer novels told in the viewpoint of a single character, Julie E. Justicz's choice of multiple points of view for Degrees of Difficulty was absolutely the best choice for this novel. This choice encourages readers to live the fear, anger, frustration, and fierce love experienced by the parents and two siblings of Ben Novotny, born with chromosomal irregularies, as they face the challenges Ben's condition forces on them. Justicz portrays Ben with great empathy, perhaps because her brother was born with the same chromosomal irregularity. Justicz has been praised for realistically portraying the difficulties Ben's siblings endure as they grow up, reach for autonomy, and build their own lives. Or, don't. Her skill in immersing readers in different points of view also explores the ways parents meet the challenges to their goals for themselves as well as their goals for their children. All their children. This is not a plotless, maudlin book, but one full of drama and possessing a narrative arc that captures the attention of readers. We want to know what happens.

[G.P. Gottlieb · Rating 5 out of 5]

Ben Novotny was born with a rare chromosomal abnormality that caused profound mental retardation and seizures. He is severely limited but forms a tight bond with his older brother Hugo, who invents fun distractions and games that become dangerous as Ben gets older and bigger. Ben’s mother, Caroline, a lit professor at Emory, is barely holding herself together with mind-numbing drugs. His father, Percy, a successful contractor in Atlanta, keeps hoping to find an institution that will provide the kind of care Ben needs. His sister, Ivy angrily longs to escape after graduation, and his brother, Hugo gives up his own dreams to take care of Ben. Degrees of Difficulty follows the family over several decades as they each come to an understanding of how Ben affected their lives
I interviewed the author for the New Books Network: https://newbooksnetwork.com/julie-jus...

[Beth Castrodale · Rating 5 out of 5]

This novel offers a powerful, nuanced, and multidimensional portrayal of the struggles of caring for a profoundly disabled family member, and of the lasting consequences for everyone involved.

Over the years, the demands of caring for the young man at the center of the novel—Ben, who has a severe mental disability and a susceptibility to frequent, life-endangering seizures—exact a steep toll on his family members, but they react to the stress in markedly different ways.

Justicz writes with great empathy about each character’s experiences with Ben, and with the frustration, love, guilt, and self-judgment that caring for him–or seeking distance from him–inspires in them.

For my full review of the book, see https://smallpresspicks.com/degrees-o....

[Janet · Rating 5 out of 5]

What a beautifully executed first novel. I am in awe of Julie E. Justicz. I really appreciated the complexity and depth with which she created her characters. This novel is so much more than a book about family, about relationships, about special needs, about hardships. Degrees of Difficulty had me experiencing all sorts of emotions. The story unfolds at an easy pace, which was good for me - it's the kind of book where you slow down when you see the end is near, to prolong the experience! I think this would make an excellent book discussion selection. I know I wanted to talk about it not only after but while i was reading. I look forward to what's next from Julie E. Justicz. I received my copy through NetGalley under no obligation.

[Amy · Rating 5 out of 5]

I was very moved by this book. It's a very thoughtful, authentic and nuanced portrait of a family's reaction to raising a child with special needs in a society that is not designed to handle those needs. The story is layered, realistic and, at times, truly heartbreaking. Justicz reveals each character with an unflinching but non-judgemental eye, and demonstrates a very real and compassionate understanding of the toll disability, caregiving and loss can take on a family. While she does not shy from the costs of those struggles, she also shows us how hope, love and meaning can emerge from pain. Beautifully written and a pleasure to read.

[SUE HOBSON · Rating 4 out of 5]

This was a quick read, a book I hard time putting down. A story of a dysfunctional family raising 3 teenage kids, one who has mental disabilities as well as seizures. This book tells the story of all four family members thru their pain, struggles, crisis, unconditional love. This is an emotional story that draws you in, and feel for the family and all their struggles.

[Caitlin M · Rating 5 out of 5]

A beautiful and heart wrenching story of family, loss, grief, and healing. Story was well written with good character development. The author has you subtly hoping they each succeed in healing and the most poignant aspect is that this is not conventional.

[Karen · Rating 5 out of 5]

A compelling and thoughtful read. Capturing the complicated emotions, reactions and interactions of Ben’s family as they try to cope with his needs and their own. Excellent first novel. Thanks, Julie. Looking forward to more.

[Ann Fisher · Rating 5 out of 5]

Incredibly vivid characters and a story line that moves briskly along. At times so depressing I wasn't sure I could finish it, but ultimately hopeful.

[James Henderson · Rating 4 out of 5]

I literally could not put this book down. It is a truly memorable story of a family facing the difficulty of raising a child with special needs. More than just the story of this young boy, the book relates the impact on the lives of each of the family members. As they try to cope in their own way the story becomes one in which each member, two older siblings and their parents, find themselves breaking under the pressures of living with and caring for the very demanding dependent young boy.

The narrative follows the experiences of each member of the family: mother Caroline, father Perry, the two older children Hugo and Ivy focusing on each, chapter by chapter. Their lives and relations with each other are shared as they handle the every day and the added burden of the youngest boy, Ben, who is mentally-challenged and prone to severe seizures. At one point, after Ben has been rejected by yet another institution, Perry thinks to himself that it has been "one long and desperate road." That seems an appropriate metaphor for much of what each member of the family encounters in this story.

The author invokes prose that is both suspenseful and beautiful in relating important moments in their lives. The difficulties mount, but there is more to the story than just hardships. Rather it is a complex tale in which their lives are not completely subsumed by sadness and strains as they also experience moments of joy and contemplation that ameliorate the pain in their lives. This is an exceptional first novel from the pen of Julie E. Justicz. Readers who enjoy well-written narratives of real people dealing with the vicissitudes of life will appreciate her novel.

[Clare · Rating 4 out of 5]

An insightful story of how each member of a family navigates their lives given a loving but stressful situation. How young Ben's disability affects and shapes the perspective and coping strategy of this family is well told by the author. This reader's book club read this book and one member grew up with a sibling with a similar disability. The story was difficult for some members as it displayed the unforgiving toll of how an unasked for circumstance can tear people apart and make it difficult to find their way back to each other. Author Julie Justicz aptly depicts a picture of love, strain and some redemption for the lives of the Novotny family.

[Diane King · Rating 4 out of 5]

Depth

Families are complicated. We all know this, but few of us can put words to paper that begin to express the depth of feelings and emotions in handling what life presents. The author has done this masterfully.