A father gives an honest account of raising his severely disabled son and the tolls it took on his family.
Holton’s heartfelt debut memoir details the unending stress of raising a physically and emotionally disabled son. His young wife, Sandra, had difficulty conceiving their first child, including an excruciatingly prolonged labor. The doctors used a fetal heart monitor, a device so new at the time that they had to consult the owner’s manual. What the parents didn’t know but the heart monitor showed was that the baby had a series of strokes during labor and, following a caesarian section, had to be revived at birth. The unaware parents only gradually realized something was wrong with their child. Young Johnny was diagnosed with cerebral palsy and epilepsy, and his early life was a nightmare of seizures and a parade of specialists and tests. As Johnny got older, his angry, violent rages became more frequent, brought on by the “monster within his head.” He also developed a charming but devious personality, escaping from babysitters, hospitals, and even a locked psych ward. Johnny required constant vigilance. His parents rarely got time off and only took one vacation in 22 years; “everything concerning Johnny fell on our shoulders and ours alone.” They also filed lawsuits, clashed with the school system, and resisted suggestions to lock Johnny up permanently. But he only got worse, with “bouts of rage and insanity that had us living on edge constantly.” Just when there seemed to be no hope, a team of doctors proposed a radical “fix”: an amazing feat of neurosurgery that completely transformed their lives. Despite a few typographical miscues—“[Sandra] wouldn’t even take an aspirin during the pregnancy…she didn’t want to harm the baby…why this?”—Holton recounts his memories in a conversational tone, broken up into short anecdotes and frequently lightened by goofy jokes, never letting himself get weighed down by self-pity or anger. While giving comfort and hope to those in similar situations, Holton’s story also provides needed insight into what life is really like for families with disabled children.
The readable, touching story of one family’s struggle and ultimate triumph.