A passionate, potent chronicle of the author’s last months with her son.
In January 2010, Rapp (Creative Writing and Literature/Santa Fe Univ. of Art and Design; Poster Child: A Memoir, 2007) learned that her firstborn, 9-month-old son, Ronan suffered from Tay-Sachs, a fatal degenerative disease, and would likely die by age 3. The Rapps had been concerned that Ronan's development was retarded; although he was an alert, happy child, he neither walked nor spoke. The author describes her moving struggle to make each day spent with her son memorable and to savor her ability to mother during the time remaining. She also considers her son's disability in light of her own congenital deformity that led to the amputation of her left leg. Though her disability goaded her to overcome all obstacles, such a path did not exist for her son. Her love for Ronan was unconditional and profound and otherworldly. In contrast to the expectations of ordinary parents, she and her son inhabited “a magical world…where there were no goals, no prizes to win, no outcomes to monitor.” Despite her tragic loss, Rapp is fierce in her defense of the unique worth of her son's short life. He was “in his own way, perfect,” and the author poses the rhetorical question: “We are not what we become, how we look, what we do—are we?” Searching for spiritual solace, Rapp and her husband attended a Buddhist retreat and cherished the words of one of the teachers: “Remember there's a whole person behind whatever physical affect presents itself.”
A beautiful, searing exploration of the landscape of grief and a profound meditation on the meaning of life.