October 24, 2011
A father celebrates his son’s life while trying desperately to save it in this luminous character study–cum–medical odyssey. Weber recounts his teenage son Damon’s battle with enteropathy, a usually fatal disorder, linked to a congenital heart defect, that starves the body of protein. Weber threw himself into researching and managing his son’s ailment, but nothing stopped the progressive debilitation and wasting; finally Damon received a heart transplant that brought new disasters in its wake. Weber’s detailed, harrowing narrative of Damon’s struggle is in part an indictment of modern medicine, which he depicts as a combination of miraculous technology with dangerously flawed basic caregiving; his furious accusations of substandard practice at New York’s prestigious Columbia Presbyterian Hospital—erroneous prescriptions, botched diagnoses, slipshod nursing, callous doctoring, “drive-by exams”—will raise eyebrows. But Weber reserves most of his energy for a tender, clear-eyed profile of his son. Small, sickly, but charismatic and a natural actor, Damon cunningly conceals his physical weaknesses while extracting every ounce of happiness from his straitened circumstances; even as he fades, this kid seems to own every room he enters. Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account.
January 1, 2012
When Weber's eldest son, Damon, is born with a heart defect, he devotes every waking hour to helping his boy lead a normal life. But Damon's complex condition requires surgeries from his earliest months, and as a consequence, he develops a severe protein deficiency that is often fatal. Weber and his wife consult experts from the nation's top medical centers, including the Mayo Clinic and New York's prestigious Columbia Presbyterian Hospital (Weber is both impressed by the latter's sophisticated medical technology and appalled by its often inept care). Meanwhile, affable Damon displays remarkable courage in the face of his deteriorating health, excelling in school and proving himself to be a talented young actor. He even lands a minor speaking role on the critically acclaimed HBO series Deadwood. For 16 years, Damon endures good days and bad, but when he becomes gravely ill, it's clear a heart transplant is the only option. Sadly, its success is short-lived. Both heartbreaking and life affirming, this is a tender tale of the love between a father and son.(Reprinted with permission of Booklist, copyright 2012, American Library Association.)
October 1, 2011
When Weber's son Damon was born, his heart lacked a second ventricle. Two open-heart surgeries allowed him to manage a full life that included a love of acting (he appeared in the HBO series Deadwood). Then, at age 13, Damon's heart rebelled. In language that seems at once vivid, heartfelt, and angry, Weber recounts the medical battle that followed while powerfully conveying his love for his son. This one will disrupt your sleep.
Copyright 2011 Library Journal, LLC Used with permission.
November 15, 2011
A father's intimate portrait of a dying son. In his debut memoir, Alfred P. Sloan Foundation program director Weber chronicles his son's monumental struggles with a malformed heart. Damon's coming-of-age amid his illness quickly becomes the narrative focal point, as well as the effects of a family worn thin from the strain of his suffering. Damon's father provides a voyeuristic view of a family in turmoil, serving as both patriarch and Damon's most dedicated supporter. Yet after 9/11, Weber reached a startling conclusion: "Why couldn't we stop this?" he writes. "What else can't we protect [the children] from?" The answer was, heartbreakingly, a life-threatening illness. After a series of surgeries and the near-constant seesawing of Damon's health, the family soon learned that a heart transplant remained his only option for survival. Weber faithfully recounts this struggle, but Damon's blog posts provide the most unadulterated view of innocence corrupted by illness. Weber's occasional overstep from intimacy to indulgence is easily forgiven by the characters he brings to life, even as he watches his main character "disintegrating before [his] eyes." In the climactic scene, as father and son met once more around the hospital bed, the author attempted a stoic farewell to his son: "There's no time for false modesty," he writes. "I'm only giving Damon is due." A heartsick father's poignant account of his heartsick son, and a primer on the fragility of life.
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