Review by Booklist Review
Ellie knows there are two types of stories about disabled kids: they get cured or they die. She was born with an incurable medical condition called VACTERL, which has already necessitated more than 40 surgeries, and she has no intention of dying over some new cough that none of her doctors can diagnose. Although her mom's made all of her medical decisions since she was a baby, chronicling them all on a blog, now Ellie wants a voice in what happens to her body. Set in a hospital and nearby home for families receiving care, Ellie, fellow VACTERL friend Caitlin, and new hospital friends support one another through relationships, the uncertainty of medical unknowns, and the gulf between the doctors who think they know everything and the patients who experience fallout when the doctors are wrong. Schreiber's debut novel is a realistic portrayal of what it means to be visibly disabled and chronically ill, how it feels to have medical decisions made without your involvement, and the absurdity that forces some families with complex medical issues to separate on paper to receive better health care. Schreiber's writing comes from personal experience with VACTERL, and while serious medical illnesses could be treated as grim, Schreiber infuses the pain and conflict with hope, friendship, and a romantic interest--someone who can see the real Ellie.
From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review
A white teen with a rare genetic condition that affects her vertebrae, anus, heart, trachea, esophagus, kidney, and limbs (VACTERL) seeks autonomy in Schreiber's affirming debut, a budding teen romance that focuses on agency and autonomy. Guarded high school junior Eleanor Ruby Haycock--who is missing a kidney and was born with vertebral anomalies, cardiac issues, and a limb difference--shields her friends from "the realities of hospital life" and fears ostracism should classmates find her mother's online blog, where she chronicles Ellie's health progress. Ellie wants to "pretend to be normal," win competitions with her debate teammates, and hang out with her boyfriend. Instead, she's back at the hospital--and is startled to find herself connecting with (and crushing on) other patients, events that challenge her efforts to compartmentalize her relationships. Though awkward phrasing occasionally mires introspective prose, Schreiber, who also has VACTERL, employs witty banter and acerbic first-person narration to unravel complexities of disability identity as Ellie learns to self-advocate, redefines what "normal" means to her, and reckons with how chronic illness can affect relationships with others and oneself. Ages 12--up. (Mar.)
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Review by School Library Journal Review
Gr 7 Up--Ellie and her mom are staying at Family Care Home, a residential house connected to the hospital, so that doctors can figure out why she can't stop coughing. Hospital life is nothing new for Ellie. She was born with VACTERL syndrome, which causes a host of medical issues (one kidney and limb differences, for example). Leaving high school, her beloved speech and debate team, and her boyfriend Jack is difficult for Ellie--but at Family Care Home she reconnects with her friend Caitlin, who shares her diagnosis, and she makes some new friends, including cute Ryan. Ellie compartmentalizes her life; she never mixes hospital friends with friends from home, and she never discusses the reality of living with a disability with home friends. When her surgery doesn't go as planned, her strategy backfires. Although the focus of this novel centers on Ellie navigating friendships (as well as sorting out her romantic feelings for Ryan and Jack), the tension debut author Schneider describes between Ellie and her mother is depicted in a profoundly honest way. Ellie's mom blogs about Ellie's medical challenges, and Ellie desperately wants her to stop, which begs the question: When you are a child with disabilities whose parent has devoted their life to caring and advocating for you, whose story is it? The understanding the two ultimately reach is authentic and moving. VERDICT Ellie's first-person narrative about navigating between hospital life and what she calls "real life" is compelling; it's a story that needs to be told. Recommended.--Ragan O'Malley
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Review by Kirkus Book Review
A teen with a rare illness struggles to bridge her hospital and school relationships. Ellie Haycock insists that her high school friends--especially her boyfriend, Jack--never know how thoroughly VACTERLs affects her life. If they knew, surely they'd abandon her, just as her elementary friends did. The genetic disease has left Ellie with heart, kidney, spine, and limb issues. She's had over 40 surgeries, and now she and Mom are staying in hospital lodging while Ellie's doctors investigate a troubling new lung issue. Worse, Mom not only decides on Ellie's medical treatments but publicly blogs about Ellie's experiences and the stress of raising a disabled child. Luckily, Caitlin Barrie, Ellie's "best hospital friend," is a fellow VACTERLs veteran, ready to dispense support and no-nonsense advice. New hospital friends provide further distraction--especially Ryan Kim. Though Ryan's insistence that Ellie should trust doctors who can't fix her is as frustrating as Caitlin's urging her to trust her friends, his tough love begins to feel unnervingly like romantic love. But Ellie's pervasive distrust risks destroying her home and hospital friendships alike. Though the secondary characters feel somewhat two-dimensional, and Ellie's development comes late in the story, Schreiber, who has VACTERLs herself, portrays myriad challenges of chronic illness, including post-traumatic stress from surgery, with often brutal frankness. Ellie's relationship with her mother is gut-wrenching and nuanced, exploring issues of privacy, sacrifice, guilt, and love. Ellie and Caitlin read white; Ryan is cued Korean American. Honest and illuminating. (author's note) (Fiction. 13-18) Copyright (c) Kirkus Reviews, used with permission.
Copyright (c) Kirkus Reviews, used with permission.
