Caring for a profoundly disabled child 24/7 is both exhausting and tension-producing for every member of a family. Worse, the lack of affordable and readily available social supports all too often puts the burden of care on the child’s siblings and parents.
For dad Perry Novotny, a successful Atlanta homebuilder, his wife, Caroline Clissold, a Shakespeare scholar and Emory professor, and their two older kids, Ivy and Hugo, the challenge of rearing their youngest, Ben, a nonverbal boy with an IQ of 32, has left almost everyone frayed and close to despair. But not Hugo. As the oldest son, he seems to enjoy engaging with his kid brother. In fact, Hugo stays by Ben’s side whenever possible, soothing him during and after his near-constant grand mal seizures, interpreting the varying meanings of his sole word, "Guh," and generally keeping him entertained. After Ben is booted from his umpteenth group home—Ben bites, scratches, and hits, unaware of his capacity to cause serious physical injury to others—teenage Hugo makes Ben his project. Others in the family know that this is not a good plan, but, somehow, they allow it to unfold. For their part, Ivy withdraws into schoolwork while Caroline withdraws into scholarly research and soothes her nerves with drugs and alcohol. Perry, meanwhile, tries to keep a smile on his face no matter what. The tensions are palpable, and an inevitable crisis looms over much of the novel. When it occurs, it packs a punch and provides an incandescent spotlight on how few resources exist for families like the Novotny-Clissolds. The novel is heartbreaking and enraging, even chilling, as it exposes, in straightforward and never-maudlin terms, the stresses and strains of providing constant care to someone who will never be independent. Different coping styles are also beautifully explicated, without judgment.
A stunning, heartfelt, and poignant debut.