Like all mothers, Emily Rapp had ambitious plans for her first and only child, Ronan. He would be smart, loyal, physically fearless, and level-headed, but fun. He would be good at crossword puzzles like his father. He would be an avid skier like his mother. Rapp would speak to him in foreign languages and give him the best education.
But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.
I have an eight-month-old daughter and was afraid that, while reading this book, I would be in tears the entire time. Not so (and this is neither positive or negative, just a fact). Rapp writes about her son Ronan with love and truthfulness, with interludes into literature and references to poetry, as well as her own personal history.
While reading the first half of the book, I was irritated by the literary and poetic interludes, because just as I started to be drawn into Ronan’s story and started to feel that crushing emotion, I was drawn back out with a reference to Mary Shelley or Pablo Neruda. As I continued reading, however, I realized that this book would be nearly impossible to read — or to write — without those interludes. The reality is simply too overwhelming and terrible to confront all at once. The interludes act as a coping mechanism, enabling one to recover before experiencing the next wave of despondency and helplessness
3 out of 5 stars.