A nurse tells her personal story of having a child with a severe genetic disorder.
Just after the birth of Busch’s second son, Mike, “his Apgar was 10, meaning that all the signs they assess in the first minutes after birth were perfect. (That was the last time in his life that he scored a perfect 10 on anything.)” It’s with heartbreaking, honest, and clever evaluations like this that Busch relates the many struggles both she and Mike endured throughout his upbringing. When Mike was 13, they finally learned the cause of his developmental challenges: 22q11 Deletion Syndrome. The term refers to the missing fragment of a chromosome, which resulted in breathing problems, constipation, learning deficiencies, and debilitating psychological problems. Busch covers episode after episode of Mike’s life: sweet moments in childhood, terrifying hospital visits, and many instances of her exasperation with his difficult nature. It all leads to an agonizing ordeal: self-immolation that leaves her son on the edge of death, facing a seemingly impossible recovery. Of his slow rehabilitation, Busch writes, “After a few months, I thought that Sisyphus had nothing on me.” Indeed, in this retelling, the uphill battle often feels tragic and insurmountable, but Busch writes with a frank, realistic perspective on every event, which keeps them from overwhelming both her and the reader. A nurse herself, Busch brings fresh insight to the frustration of modern medicine’s shortcomings. On Mike’s behalf, she clashed with unhelpful doctors and weary school districts, making this a stirring, compulsively readable story of a parent fighting for her child’s rights. However, Busch is most at ease navigating the myriad emotional reactions she’s had throughout Mike’s life. Attempts at dialogue and re-creating specific moments can feel unnatural compared with the conversational style of her internal discourse. For example, she finds strength in her religion but also brings a fascinating, critical eye to suffering and its effects on faith. It’s with this smart, compassionate voice that she writes of her most relatable struggle: reconciling the dream of normalcy with the realities of life.
A moving, intelligent examination of raising a child with a disability.