March 14, 2011
Canadian writer Brown presents a moving and deeply felt account of his life with his son Walker, who is one of fewer than 300 people in the world who were born with CFC, cardiofaciocutaneous syndrome, an extremely rare genetic mutation that didn't even have a name until 1986. Brown is uncompromising in his description of his son's conditionâwhich includes mental and physical disabilities such as seizures, severe facial irregularities, an inability to speak, and a compulsion to hit himselfâas well as the impact that raising him has had on Brown, his wife, and their daughter: "the years of desperate worry and illness and chronic sleep deprivation... threatening our marriage and our finances and our sanity." But Brown spends an even greater amount of time sensitively describing the many joyous moments that reveal to him how "Walker is an experiment in human life lived in the rare atmosphere of the continuous present." And the second half of the book describes Brown's fascinating worldwide investigations into the various living situations offered to people with CFC as well as his visits with other families whose children have CFC.