Tuesday, June 10, 2014

Elizabeth and Sophie and Hope for a Sea Change

I look at that 18-year-old photo of Elizabeth Aquino and her daughter Sophie, taken from Elizabeth's blog, and I am undone every time. Elizabeth's eyes are so full of fierce hope, so determinedly upbeat, but look closer and you see the exhaustion in her eyes, the red-rimmed telltale signs of sleep deprivation and recent tears, and, I imagine, the dawning realization that the medical twilight zone she and husband Michael have entered in their quest to find a cure for their infant daughter's debilitating seizures, may not soon end.

Elizabeth's memoir, Hope for a Sea Change, published by the women's e-publisher Shebooks (for whom I am an editor), is now available for just $2.99 on Amazon and will be available on Shebooks.net starting tomorrow. Even though I had already read it, I downloaded it this morning and began it anew. I could not stop reading. Once again I was drawn in forcefully by Elizabeth writing, the clinical details woven with raw emotion, the horror and the hope. Reading her memoir of Sophie's first year and some of life, after her diagnosis, I am both broken and illuminated, the experience a mixture of sorrow, wonder, reverence, humility, disbelief, outrage, awe.

You might think you know our beautiful Sophie's story from Elizabeth's blog, but Hope for a Sea Changes brings home the origins of that medical odyssey in a much fuller way. Not only is Elizabeth's account of her family's story in real time powerful beyond measure, but it is instructive, too, an absolutely necessary document in the medical treatment—and in hindsight, mistreatment—of epileptic seizures of the sort Sophie suffers. This family’s harrowing search for healing, which ultimately takes them from the tradition-bound New York medical establishment to alternative therapies in Los Angeles, is parenting at its most extreme. It brings me to my knees.

I hope everyone will buy and read Elizabeth's book, which is part one of a longer work that will ultimately include Sophie and her brother's growing up years in Los Angeles, and the recent and unprecedented cessation of Sophie's seizures for weeks at a time through medical marijuana. Download Hope for a Sea Change to your Kindle, Nook, iPad, computer or smartphone by going here. We all need to be educated. We all need to help turn the tide. Thank you, Elizabeth, for writing this book, for showing us so bravely how you do it.