If I could only use one word to describe this book, that word would be STUNNING.
Vicki Forman became a person she never imagined she'd be when her 23 week gestation twins arrived prematurely. Despite her pleas to the doctors to let them go and not resuscitate them, California law dictated that this could not happen. The twins, Evan and Ellie, survived their birth, though Ellie passed away 4 days later. The months and years to follow find Forman on an unimaginable journey which she details in This Lovely Life.
Evan's story isn't that story we read about when the premature baby goes on to be 'just fine', a little behind in development but otherwise 'normal'. His story is the one in which he spends months in the NICU, with tiny bits of progress, but problems always cropping up. Things are never really 'just fine' for him. A feeding tube, blindess, seizures. These are but a few of the challenges facing Evan and the Forman family as they come to terms with the fact that Evan is considered profoundly disabled.
Forman writes with an unbelievable amount of honesty. The power of her words that articulate the fear, anger, and dismay she felt gave me a heaviness in my chest as I read and reread them. We experience the love Forman has for Evan, as she truly becomes his advocate and fights to achieve for him a life that he deserves. Forman also displays an incredible amount of hope. Throughout it all, she remains steadfast in her determination to celebrate what Evan can do, rather than what he cannot.
This Lovely Life is a sad book, but it is also full of love and hopefulness. It is the sort of book you think about when you are not reading it, that questions how to cope with medical professionals that often treat a patient as a series of problems to be fixed rather than as a human being, the sort of book that questions what 'life' really is.