The Assembler of Parts

by Raoul Wientzen

From the start of this extraordinary first novel, eight-year-old Jess finds herself in heaven reviewing her short life. She is guided in this by a being she calls the Assembler of Parts, and her task, as she understands it, is to glean her life's meaning. From birth, it was obvious that she was unlike other children: she was born without thumbs. The Assembler left out other parts too, for she suffers from a syndrome of birth defects that leaves her flawed. But soon it becomes apparent that by her very imperfections she has a unique ability to draw love from — and heal — those around her, from the team of doctors who rally to her care, to the parents who come together over her, to the grandmother whose guilt she assuages, to the family friend whom she helps reconcile with an angry past. With a voice full of wisdom and humor, she tells their stories too. Yet, only when she dies suddenly and her parents are suspected of neglect, unleashing a chain of events beyond her healing, does the meaning of her life come into full focus. And only then does the Assembler's purpose become clear.

With prose that is rich in emotion — from laughter to tears to outrage to joyful relief — and an eloquence that distills poetry from the language of medicine and the words for ordinary things, Raoul Wientzen has delivered a novel of rare beauty that speaks to subjects as profound as faith, what makes us human, and the value of a life.

Genres: Fiction, Literary Fiction, Young Adult, Book Club, Death, Disability

336 pages, Hardcover

First published September 1, 2013

Reviews

[Miss Fickle Reader · Rating 2 out of 5]

I was profoundly disappointed with this book. As someone who has personal experience with children with birth defects, I was at first excited and moved that Wientzen features Jess, a child with Hilgar's syndrome, as his main character. Moreover, the entire book is set after the child's death as she watches the story of her life on videotapes that God brings to her in a certain purposeful order. The setting, I thought, was extremely inventive and the characters powerful and complex, including Jess, whose disabilities mask an intelligent, creative, and philosophical mind.

At about the halfway mark, however, when Jess dies (an unexpected moment in the course of the main story, even though the reader has known of its approach from page one), the book gets hijacked by an agenda-driven morality tale that I found bordered on offensiveness. It turns out--and this is also foreshadowed in the first half of the novel--that the cause of Jess's death had to do with yet another physical problem that should have been diagnosed but wasn't due in part to her doctors' negligence. Suddenly, instead of focusing on the aftermath of Jess's passing, the plot devolves into a painfully dogmatic account of how fighting for "justice," in the form of financial compensation, is bad and will destroy your family unless you forgive your child's doctors, even if they've consciously tried to mislead you and cover up their incompetence. You can practically hear Wientzen, who is himself a pediatrician, shouting "Tort reform! Tort reform!" behind all of Jess's eloquent afterlife speeches about how the only route to healing after loss is to let go of all blame (including, apparently, the culpability of those who botched your loved one's health care). The attorney that Jess's parents hire to plead their case is a stereotypical greedy trial lawyer, complete with weasel-like features, and his slick attempts to earn as much money as possible off of Jess's dead body turns the bereaved couple into a pair of bumbling, mendacious idiots. (Because, you know, a working-class mother and father couldn't possibly have enough intelligence to escape being coached into perjuring themselves on the witness stand). This is flat-out insulting to anyone who's ever seen how the actions of careless doctors can and do ruin people's lives. Frankly, if my child's medical team ever acted the way Jess's doctors do in Wientzen's novel, I wouldn't want them to simply waltz away and face no consequences for their actions. Wouldn't that mean the same doctors could cause similar damage to another child and her family? Is forgiveness what's on offer here or a complex rationalization for failure?

[Laura · Rating 4 out of 5]

In The Assembler of Parts , Wientzen (a semi-retired pediatrician) introduces us to a little girl named Jess. She's born with a rare genetic syndrome that her doctors dub Hilgar's syndrome. Some quick Google research seems to point to that particular name being fictional, however the symptoms Wientzen describe are quite similar to a real genetic defect--Holt-Oram syndrome. Like Jess, children with this syndrome have bone deformities in the forearms and can lack thumbs. Also like Jess, 75% of children have heart defects (most commonly in the septum). So the story is based in reality which makes the nurse in me happy :)

The story begins with Jess already dead, and watching her life on a sort of 1950's movie projector reel up in heaven. She's watching her birth, the faces on her parents, and the doctor's face as her missing thumbs register. Wientzen chooses to use first person POV, and somehow manages to make a baby's thoughts seem somewhat realistic.

Final tally before going home from the hospital: two thumbs, twelve bones, one kidney, one uvula, and two holes in the heart.
Final words to my mother before Dr. Garraway left that night: "She's a keeper, all right."
He made me feel almost perfect.

We are drawn into Jess's magical world of glow-in-the-dark constellations on her bedroom ceiling, readings of mythical creatures with her Uncle Cassidy before bed, and multiple visits to the ENT, heart doctor, geneticist, and general doctor with her parents. We see her worm her way into Cassidy's drunken heart, slowly melt the heart of her Grandmother, and win over the admiration of her father. This is something Wientzen does very well--showing the day to day struggles (but also joys) of raising a child with a disability. Make no mistake, there is nothing wrong with Jess's mind. In fact, she is quite intelligent for her age. She made me laugh as she answered catechism questions in her very old fashioned Catholic school. Here she is showing the priest what she's learned.

"Why did God make you?" he asked me as he offered me my catechism...We all knew the answer by heart. It began to play in my head--God made me to know Him and love Him in this life and to be happy with Him in the next--but I knew a better answer, a truer one. It had made Cassidy laugh when he heard me say it at supper. So I proudly presented it now to Father Murray. "He just likes to make stuff. He's like my granddad, Ned. He can't stop tinkering. Sometimes Ned forgets a nail or a screw. So does God." I held up my hands and nodded knowingly.

I would easily have given this novel 4 stars if not for two caveats. First, like another reviewer, I found the contrast between middle-class, Irish, Kate and Ford (Jess's parents) with the minority parents in the class they attend to be stereotypical and even a touch racist. Perhaps Wientzen's portrayal was unintentional, but its hard not to interpret those scenes in that way. Secondly, the last third of the book takes off on a litigation tangent. It's fairly apparent that Wientzen's years as a pediatrician gave him a strong dislike for lawyers, and his personal feelings are put on display loud and clear in the novel. Are Americans sue happy? Probably. But there is a time and a place for everything. When there is clearly painted medical malpractice, and then the "moral" of the story is that forgiveness is healing...well that almost seems to say doctors should *always* be forgiven. I can't agree with that. Also, the lawyer's name is Brandon A. D'Woulfe, a thinly veiled B.A. D'Wolf. Makes me wonder if past experiences needed venting.

Bottom line: Wientzen gives Jess a strong voice, and a personality to match. He offers up excellent prose, well done dialogue, and well-rounded characters. I truly enjoyed getting to know Jess and her family. Given 3.5 stars or a rating of "Very Good". Recommended for those who like non-cheesy drama. Read with a box of tissue handy.

Now I watch Mother with Jeanine in the dead of night in those weeks after I was buried. Jeanine cries now not for milk, but for comfort from the sadness that everywhere surrounds her at home. Mother comes to her room bearing more. Mother cradles Jeanine in her lap on the rocking chair and cries until her tears run dry. She is so thirsty, and no one comes. She sobs dry sobs with Jeanine in her arms, and no one comes. I would give anything--even these new thumbs of mine--to bring her water again in the dark. Even just once. There was something sweet in the bottom of the plastic glass, in that last sip she always saved me. I never wasted a drop.

[Roland Brawner · Rating 5 out of 5]

A masterpiece

I have never read a book like this one. It is beautiful. It is a story of love and loss and triumph. It is a story of family. Please read this book. When you read the last page you will want to hug this book and read it again. I loved every word.

[Chrystal · Rating 5 out of 5]

I feel like someone needs to get a hold of Brad Pitt and beg him to make this book into a movie so a wider audience can feel all of these emotions.

[Meghan Abrams · Rating 3 out of 5]

Some of the sentences in this book are heaven sent. It's an odd yet believable story told well and with some transcendent phrasing.

[ALPHAreader · Rating 5 out of 5]

This is the story of Jess in heaven, as she reviews her short eight years of life via film footage The Assembler provides.

Jess was born without thumbs, missing bones, an incomplete heart and half-formed ears.

We see how dearly loved Jess was, and how marvellous her childhood. A mother who loved her fiercely from the first, her father who took a while to come around, and their friend Joe Cassidy who saw in Jess his own child who was also taken too young. Then there were the doctors who played such an important part in Jess’s short – and sometimes painful – life.

Down on earth and unbeknownst to Jess, her family turn their missing and grieving to a wrongful death lawsuit that takes them down a dark path – particularly when fame and money-hungry lawyers distort Jess’s memory.

‘The Assembler of Parts’ was the 2013 debut novel by Raoul Wientzen.

I read and loved this novel last year, and even included it in my end-of-year favourites list. But I couldn’t write a review until now – partly because I insisted on passing the book on to my nearest and dearest first – and also to collect my thoughts and feelings on this beauty.

The best way I can think to describe Wientzen’s impressive, heartfelt debut is as an adult equivalent to R.J. Palacio’s ‘Wonder’, with a heaven-bent similar to Alice Sebold’s ‘The Lovely Bones’. But, having made those comparisons, I must stress that ‘The Assembler of Parts’ is unlike anything else I’ve ever read and Raoul Wientzen’s lyrical voice is utterly unique.

Our narrator is eight-year-old Jess, reflecting on her life as she resides in heaven. And though she doesn’t sound like any typical eight-year-old, it can be debated that she didn’t have a typical life. If anything, as she reflects on her complicated life before death, I came to believe in this young woman’s wise and tender words, her astute observations and extraordinary leniencies as she observes herself from day dot;

Father took a picture of us that morning just before we left to go home. The room was festooned with flowers and balloons. Mother was holding me cradled in the crook of one arm, and in the other rested a bouquet of red and white roses. Her head was inclined toward me and she was smiling, with sunlight on her neck. It became our family’s Christmas card ten months later. I studied it many times as I grew older. I was five before I understood its powerful message. The sleeves of my sweater are pulled up to the mid-portion of my forearms. My baby-pink skin shines against the bright red silk. The looking eye notes that contrast immediately. The eye is drawn also to the hands, the four-fingered hands, the thumbless hands. There are two bouquets in Mother’s arms, her message to the world.

The first half of the novel is a the story of a childhood – mostly wonderful, sometimes painful – and these feelings seemingly magnified by the knowledge that Jess’s is too short, and lived with so much pain amidst so much love. This is distilled in the two most important men in her life; father, Ford, who initially struggles with all the obstacles his daughter has to overcome and family friend Joe Cassidy whose own wife and child were taken from him in a tragic accident, and who turned to drink as a way to cope. Cassidy in particular, Wientzen uses to really distil this idea that there is beauty in the heartbreak, and something to be learnt from tragedy. Cassidy loves Jess wholeheartedly right from the beginning, and is probably her first real friend who instils important lessons and outlooks in her early on;

He took my hand in his. “These are good hands. Good as any, Jess. The Assembler made ‘em, and He don’t make junk. You got enough fingers for two kids. Enough voice for ten. He makes everything just to please Himself. The bones and the skin, the meat and the sap, just the way it suits Him.” He let go of my hand and tweaked me on the arm. “Bones and sap.”
I nodded. “He makes things like I make cookies?” I studded cookies with raisins – three eyes, or two, or one and as many noses as I wished – just for my own pleasure, and then gave them to Mother or Nana to admire. Then I’d get to bake them and eat them.
“He got everything together in one place and glued you all together and there you were, and you made Him happy,” he said nodding.
“Nails, screws, glue and whatnot,” I added casually. “The Assembler did it.”

The novel takes a bit of a sharp turn as we catch-up in real time to Jess’s death, and how her family cope (unbeknownst to her) in the aftermath. It becomes painful lawsuits and malpractice suits, accusations of parental neglect and the distortion of their daughter’s memory by misguided lawyers. This second-half feels more like a whodunit unfolding, and after reading about Jess’s childhood that helped shape our inquisitive and lovable narrator, it is quite jarring to read such misery.

But this novel mimics life in the up’s and down’s – and lessons to be learnt in even the darkest of times. And, always, there is Raoul Wientzen’s stunning prose to buoy the reader;

There were so many worlds in my mother’s face, a dozen at least in her round brown eyes, a hundred in her smiles.

I adored this novel. I think it’s one that adults and young adults can enjoy, because everyone can learn something from Jess’s well-lived life, no matter it was too short and full of seeming obstacles.

[Pat · Rating 5 out of 5]

Deeply movig and profound.A pediatrician specialists has written a book about a "disabled" child, from the child's point 9f view and it is heart- breaking, funny, full of wisdom and folly and the hubris of modern medicine and the the pain and beauty of this mortal life. Extraordinary. I am still in thrall to the vision of this simple story.

[Dale · Rating 5 out of 5]

I thought this book was very well written and quite a unique story. Took me a couple chapters to get in to it but then I didn’t want to put it down.

[Mary Hillier · Rating 5 out of 5]

Little Jessica Mary Johnson is born with Hilgar's Syndrome and is missing 13 body parts, mostly notably, thumbs. The Assembler of Parts, as Jessica calls God, seems to do this on a whim, but by the end of this moving story filled with lyrical prose that fairly sings, we come to see The Assembler had a loving purpose behind every missing part. Jessica is a smart, precocious, funny little girl, undaunted by her physical challenges and with a view of life as bright as the constellations arrayed on the ceiling of her bedroom. Jessica tells us her story as The Assembler shows her the tapes of her life. Jessica tells us her story as The Assembler shows her the tapes of her life. Yes, much like "The Lovely Bones" the child protagonist is dead before the story begins. And just like "The Lovely Bones" this story is engaging as the mystery of Jessica's death unfolds. It is heart-breaking for the reader to watch Jessica's extended family, mother, father, grandparents and devoted friend Cassidy (who struggles with his own family tragedy) heroically come to grips with Jessica's disabilities, as the reader knows the family will soon face her death. It is even more heart wrenching to watch the terrible aftermath of Jessica's parents being wrongfully accused of Jessica's death and, when the true cause comes to light, the price the entire family pays in their attempt to find justice. In the end, however, what they find is "the peace that passeth all understanding." The Assembler of Parts is an amazing debut novel, and Raoul Wientzen is an author to watch.

[Angela Micheletti · Rating 3 out of 5]

I rated this book with 3 stars, but I would actually give it 3 and a half stars, only for the third part of the book. I found so much beauty through out the first two parts in Jess, the way she saw the world and with how much experience and acceptance she offered for such a young child. I highlighted so many beautiful passages to return to and re-read, if only as a reminder to myself to speak and act with kindness, always.

I especially appreciated Jess's relationship with Cassidy - he was the most beautifully and precisely developed character through out the entire book, even above Jess I think. His role in the 3rd part of the book was the only thing I enjoyed about it. I understand the need for the malpractice lawyers in the story in order to get us to the conclusion, but after being so inspired be Jess, concerned for Cassidy, and mourning with Ford, Kate, Ned and Mae it was difficult to shift towards vengeance so quickly, even though I think that was the authors full and executed intent.

I would encourage readers to pick this one up and stick with it. There are moments when the book becomes difficult to understand, but just slow down, re-read and soak it in, because the underlying message of this book is so powerful. I think Jess puts it best when she says: "Did He make me a little imperfect to preserve me from some greater imperfection? Did he number my bones to improve my soul?" Yes. The answer is Yes, and we could all use more of that insight when we are feeling sorry for ourselves.

[Jen Lorelei · Rating 2 out of 5]

There were definitely elements of this piece that I loved. For instance, I became absolutely endeared to Jessica, in particular, and her family, in general. Jessica's ideas on God, as well as her general gutsiness in her daily life, were a treat to read. For those who have a background in the credal faiths, there are many rewarding references to discover during reading.

I also thought the premise of this story was very interesting...as a fan of The Lovely Bones, I enjoyed the idea of looking in on the world from heaven very intriguing. The theme was also quite lovely.

Unfortunately, there were a few items that hindered my ability to wholeheartedly recommend reading this. Sometimes, I felt that Mr. Wientzen chose words because they showed his command of vocabulary rather than because they were the best choice for the situation. I also felt that many of the side characters (including the doctors, investigator, lawyers, and social worker) were annoyingly flat. This was especially confusing and disturbing in a section of the book that involves a Child Protective Services class. In my mind, this part of the novel served little purpose besides being the match that inflamed the parents' anger. It seems that there would have been any number of ways to achieve this that would have been more believable and less rooted in unfortunate stereotypes.

[Kay C · Rating 5 out of 5]

Jessica is born deaf, with no thumbs, plus other health issues. She narrates the story from her point of view in heaven as a very mature 8-year old. Highly intelligent, Jessica relates her observations about family, friends and world around her. It is a unique, descriptive, engaging style that I've not come across in recent memory. A common theme throughout is the galaxy and constellations. A very special person in her life is a colleague of her father's from the post office who is known lovingly to Jessica and her siblings as "AceyDee" (aka Cassidy). His character brings depth to the story through his psychological afflictions of guilt and sadness as a result of losing his young family in a car accident. When Jessica dies, as a result of a deformity missed by her doctors, her parents decide to pursue a lawsuit. There are many lessons learned during and as a result of this process. What I particularly liked were the lessons of forgiveness and how these allow love to shine through and us all whole. It's an incredible story, woven with many messages, and highly recommended.

[Mariah Nelson · Rating 5 out of 5]

Wow. Such a compelling, thought-provoking novel; my favorite kind. Dr. Wientzen, a pediatrician who deftly weaves a medical tragedy with an uplifting spiritual tale, has created a memorable young character with multiple disabilities. The Curious Case of the Dog in the Night-Time, Geek Love, and To Kill a Mockingbird all come to mind (for different reasons.) The plot (which involves a flawed, attractive family struggling to come to terms with a daughter's death) also reminded me of another favorite book, Mr. Ives' Christmas, by Oscar Hijuelos. I mention these other great novels only because I really think this book belongs on a shelf with such stellar accomplishments. I'm impressed that this first-time novelist was able to weave the huge human themes of love, forgiveness, God, imperfection, grieving, death, healing, and letting go into one rich, well-paced, original, affecting story told by a wise but searching little girl. Kudos to the author. Highly recommended.

[Lisa · Rating 2 out of 5]

Was just MAD when I finished this book. Such a beautiful beginning—a child who was beyond special, who touched and healed many lives, whose family and doctors loved, celebrated, and cherished her. Her vantage point from “heaven” gave her omniscient perspective of those she loved during her short but special life. But then the second half of the book robbed me of every special feeling I had. Enter caricature CPS worker, cop, and greedy lawyer. I can’t believe the doctors who were so good to her in life became such conniving spineless people in death. But the worst and most disappointing is the incredibly good parents who would willingly destroy their daughters memory for money. The book started a string 4/5 and crashed to a 1/5, leaving me barely able to give it a 2. I wish the book had ended at her funeral.

[M · Rating 2 out of 5]

This book came highly recommended by friends back in 2015, and yes, we’re still reading buds. They loved it, sobbed and snotted over it. I dunno if it’s cuz of my sort-of-agnostic beliefs or medical background, but this was like reading a bad fantasy book. The first words that came to mind were: Depressing and boring. I thought the author exhibited Dissociative Identity Disorder traits, because this book read as though two different authors wrote it. I stopped reading about halfway in. Then I tried listening to the Audible version, but the child’s voice was maddening.

So here I am in December 2019, trying to divest my TBR virtual stack of the ballast of partially-read-books. I skimmed through the book but found no joy.

Abandoned.

[Kristi · Rating 4 out of 5]

The Assembler of Parts was extremely sweet, occasionally troubling, often thought-provoking, deeply moving, and always beautiful. If you read this book, keep a box of tissues handy. I loved the rich storyline and characters; I can really believe these people thinking and acting the way they did. It was an outstandingly accurate portrayal of complex, beautiful, messy humanity. And the portrayal of God felt true, as well: mysterious, sometimes frustrating, but tender and affectionate and active and wise, even when we can’t see/feel/understand Him. I nearly gave this book 5 stars except that I am outrageously stingy with stars.

[Julie · Rating 5 out of 5]

I have never before felt compelled to write a review before I've finished a book, but for this one I'll make an exception. I'm only on page 50 and already I can't wait to lend this one out! The story is told from the perspective of Jessica, a child born with genetic birth defects, who is now in heaven. That alone makes it unlike any other book I've read, but what I love is that she starts off recounting her birth and moves forward chronologically. Who hasn't ever held a baby and wondered what they were thinking? Jess will tell you every detail she noticed during her infancy. LOVING this!

[Richard R., Martin · Rating 5 out of 5]

I want to give this book 10 stars! I didn't know what to expect when I started but I was captivate when I started reading. It is the story of a girl who died at 7 years old after being born without thumbs, working ears, one kidney and holes in her heart. She is the narrator of the story as she describes her life and life of her family and friends while viewing tapes brought to her by the Assembler of Parts, i.e. God. It is story filled with great insights, love and forgiveness. I can't recommend this book highly enough.

[Janet · Rating 2 out of 5]

The more I think about this book the more I dislike it. The story didn't hang together, the first half and the second could have been written by two different authors. The character development was nonexistent, depending solely on stereotype, which was annoying when confined to the drunk Irishman but became downright offensive when considering the characters of color toward the end. The use of the asterisk was a nonsense and distracting plot device as was naming the lawyer B.A.D' Wolfe. Do yourself a favor and pass on this book.

[Diana Boyce · Rating 5 out of 5]

A Healing Book of Life in its Whole

As someone in end-of-life care who has witnessed much death, I can say this book tells it all. There is grief, sadness, brokenness, anger, emptiness. But if faced and walked through, there is hope, there is healing, and finally, there is celebration. The author shows it all, gets it all right. And there is deep spiritual learning to be had, if one just stays in each moment, pays attention. Every person experiences death, of others and eventually of oneself. Everyone would benefit from this book.

[Katherine Gekker · Rating 5 out of 5]

Raoul Wientzen's first novel is brilliant -- beautiful writing, incredible story. The Assembler of Parts is full of wisdom and love. It is a medical mystery but to call it that diminishes it. Dr. Wientzen deals with life's most important themes -- death, love, guilt, pity, remorse, ethics, all with a fresh voice, unusual plot, and compelling characters. I laughed, I cried, I mourned the end of this book. So I read it again!

[Kellie · Rating 5 out of 5]

It is a very rare occurrence that a book leaves me teary eyed every single time I walk away from it. This book is thought-provoking and beautifully written. Some parts were extremely difficult to get through, meaning my heart broke a little each time I imagined Jessica's family immersed in their grief. I am glad I chose this book while randomly perusing the library shelves. A definite good read!

[Christie · Rating 5 out of 5]

TAOP is a wondrous book

Very unique & beautiful. I highly recommend this for anyone who's experienced love & loss. It's a healing story that enters your heart from the first few pages.

[Sue · Rating 3 out of 5]

Not sure why I didn't REALLY like this. The story was engrossing but again I think that the plot and most of the characters were not very well developed...

[Sara · Rating 4 out of 5]

Wow, what a beautiful book. It had so much heart and was full of amazing characters. I'm really glad I read this one.

[Matt Haynes · Rating 5 out of 5]

I really enjoyed this book and especially it's theme.

[Linda · Rating 5 out of 5]

This is a book like no other -- or, I could say, it is the novel built on ideas in a book the author has probably never read, Gerhard Lohfink's "Am Ende das Nichts?" which in English translation (by me) is called "Is This All There Is?" (Liturgical Press). The premise of the latter book is that resurrection happens in death and in that timeless moment we will have presented to us all the good and all the evil we have done in life and will be able to reconcile with others in our lives, to forgive and be forgiven, to thank and be thanked, and so to embark on new life. The Assembler of Parts dwells on forgiveness through the eyes of one with much to forgive but whose new life is also affected by the struggles of her yet-living family to forgive and be forgiven, to live her memory in a way worthy of her.
An important aspect, one that was obviously off-putting to another reviewer, is the emphasis on how our society's values work against forgiveness in the name of "justice" (which in this context really means retribution). It is hard to ask victims of injustice to forgive -- indeed, we who are distant from or complicit in the wrong have no right to ask. But as Archbishop Rowan Williams has written (and I have never forgotten it) "only the victim has the right to forgive." (Which is why, I hope, Christians believe that God made Godself the victim of all our wrongs, in order to have the right to forgive them.)
I confess I started reading the book more than a year ago and stopped after a chapter or so because I couldn't see where it was going. Please, if you read it, persist until it seizes you, but be warned: you'll have a hard time letting go after that.

[Eva Thieme · Rating 4 out of 5]

I liked this book, even though I didn’t know anything about it before reading it. The plot is unique and draws you in from the start. Jess, a girl who was born with a rare medical syndrome that left her with deformities in her hands as well as partially deaf, tells her life story from the vantage point of having died at age seven. With the help of a series of videotapes a God-like figure she calls the Assembler gives her, she tries to find the meaning in her brief life.

The character of Jess is beautifully conceived. You fall in love with her from the start, the way she sees the world and observes those around her, including her own family. And because there is not an ounce of bitterness in her telling of the story, you feel compassion not just for her but also her parents and Cassidy, a family friend who is devastated by his own grief but blossoms through his unlikely friendship with Jess.

The first 2/3 of the book were truly enjoyable, but the rest fell a bit flat. It all comes together again for an okay ending, but in between the author veers a little too much into stereotypes of lawyers and social workers. One cannot help but wonder what grievances the author – a doctor – has with either of those groups. His skill in drawing up Jess, her family, and her doctors with all their strengths and weaknesses, managing to help the reader love them or at least understand them, seems to have gone AWOL in the latter part. I wonder why the editor didn’t pick up on that.

But altogether it was a book worth reading.

[Shen Nimesher · Rating 2 out of 5]

I so badly wanted to enjoy this book, but there are a few things that irked me, for one the religious overtones of the book. I don’t mind religion that is presented in a nuanced and interesting way, but the way it’s presented here adds nothing new to the disability conversation. Secondly, the first half of the book was definitely written by someone entirely different. It is written with enough care and sensitivity, it made me fall in love with Jess. The best parts of the book are when Jess is the central focus. Unfortunately, the book devolves into stereotypical territory, characters fit into boxes, and race becomes a tool for villainising some characters (it’s lazy!). The book cheapens Jess’s legacy by exploiting her death to vindicate her parents, my question is, why isn’t the focus of the story on Jess? Why is her death a building block/ plot device? I could not finish the book, the sentimentality in the first half cannot make up for the lack of creativity in the second half. I will not say this book is unreadable, but you’re better off reading something else, unless you want a ‘run of the mill’ fell good, simple, black and white portrayal of disability and parenthood, go ahead. For people like me, it’s better to read books not written by people who aren’t familiar with disability or suffering.

[Sammy · Rating 5 out of 5]

Golly, this book. Gut-wrenching and beautiful, it made this mommy cry far more than your average read. The first half was my favorite in its simple, innocent narration -- I loved this interpretation of the mind of a child. The central tragedy will stay with me for a long time, but it was well-written and tinged with the child's sweet perspective. The latter half of the book I liked much less; it moved a bit slowly, and the characters' decisions were often perplexing. Some of the characters -- especially the two youngest -- weren't developed much at all. But I think it did what it was meant to do in showing the ripple effect of the tragedy. The end was a little rushed, but the closure was good and the lasting impression was positive.

Overall, I'm giving this 4.5 stars because the first half of it was so touching that, even though I wasn't enthralled by the second half, this book will stay with me for a long time.