A mother’s loving memoir about caring and advocating for her son, who was born with a severe form of cerebral palsy.
When her son Graham was born, Tresness knew there was something wrong with her baby. She was right. He ended up suffering from multiple seizures and stayed in the intensive care neonatal unit for 24 days. Tresness and her husband, Greg, learned the heartbreaking diagnosis: their son had cerebral palsy and would most likely never sit, walk unaided, or speak. Tresness describes, without complaint, the herculean task of caring for Graham—feeding him, changing his diapers, cleaning up his vomit, soothing his long bouts of crying. She relates how thrilled she was to discover craniosacral therapy, which uses therapeutic touch on the cranial joints to alleviate stress and pain, and describes how Graham, who never smiled, finally did so—at age 2—after a CST therapist worked with him. Tresness met and befriended John Upledger, the developer of CST. Intrigued by the therapy, she became a CST therapist herself. She describes how she and her husband learned about “eye gaze technology,” a computer system that allowed Graham to communicate, and the thrill when Graham used it to call the family dog. In response to their son’s success, the couple developed and founded CHAT, a program that teaches and enables nonverbal people to communicate through technology. The author also recounts how she and her husband had to hire attorneys to battle unsupportive school administrators to fight for Graham’s right to a fair education. The narrative is powerful and heartfelt, but the prose needs a thorough edit to fix incomplete sentences and mixed tenses: “It was exciting because he is in puberty, and developing muscle growth now is so important for his overall health.” Still, Tresness’ positive perspective on her life caring for and loving her disabled son resonates.
A bumpy read, but it conveys the power of love and will; of special interest to caregivers of children with severe neurological disorders.