About the Book:
Sean has spent twenty years in Third World war zones and natural disaster areas, fully embracing what he’d always felt was his life’s mission. But when burnout sets in, Sean is reluctantly drawn home to Belham, Massachusetts, the setting of Fay’s much-loved Shelter Me. There, he discovers that his steely aunt, overly dramatic sister, and quirky nephew are having a little natural disaster of their own. When he reconnects with a woman from his past, Sean has to wonder if the bonds of love and loyalty might just rewrite his destiny.
If I offered you a chance to know your future, would you take it? Most of us aren't offered that opportunity in any reliable way, but some are. A prenatal test can tell you that you will spend the next years caring for a special needs child, or the next months mourning a child who will not live long after birth. A test for Huntington's Disease will tell you if you are going to develop a progressively debilitating disease, a disease that is genetic, a disease for which there is no cure, a disease for which there are no symptoms until you middle-aged, a disease that will kill those who have it. Sean's mother died of Huntington's so there is a fifty percent chance that he has it. Should he get tested? Sean was one of three siblings, none of whom have chosen to know for sure what the future hold,
I won't pretend to know what it must be like to know that disease is in your family. Sean was old enough to remember his mother and her illness. He decided to live his life fully before middle age. He had a vasectomy so he would not transmit the gene (if he had it) to any offspring. He chose a career as a nurse to disaster areas--famine victims, areas hit by earthquakes, war zones. He'd stay in one place a while and then head to the next place that needed him most. At first he thought it was a calling from God; now he isn't sure God exists. He is burned out and heads back "home" to decompress, and when he gets there he is forced to take a look at where his life is, has been and where he wants to be in the future. He again has to decide whether to take "the test", though he realizes he is now older than his mother was when she got sick.
This is a story about a family. It is a family that is not normal by most people's standards, and much of that abnormality can be blamed on Huntington's but they also have much more common challenges--aging elders, teens who don't fit in, those who feel trapped by family obligations, divorced adults who have become estranged from their children. When Sean gets home he has to make a choice--does he stay and get involved in the messiness of the lives of his family or does he head off to the next disaster to deal with the messiness of the world?
Sean is Catholic; at least nominally so. He is going through a crisis of faith in this book, but the book is not really religious fiction. It asks far more questions than it answers.
Sean's nephew suffers from sensory processing disorder. In short, he has very sensitive senses and the input from them can overwhelm him easily. He hates being jostled, smells in the school cafeteria overwhelm him and he refuses to wear socks. While Kevin in not autistic, he shares many traits that go with autism and the book has some good information on this condition.
I'd like to thank Leyane Jerejian at FSB Media for sending me a review copy of this wonderful book. Grade: A.
You can view a video trailer here.
As noted above, Huntington's disease is a progressive genetic disease that generally ends up killing those who have it. Everyone has the gene on which Huntington's is carried. If your gene has a particular defect, you get the disease. In order to get the gene with the defect, you must have a parent with that gene, and if you have the gene there is a 100% chance you'll develop the disease if you live long enough. Symptoms do not appear until middle age, generally somewhere between 30 and 50. In short, you are not at risk for the disease unless one of your parents has it, and if one of your parents has it, there is a 50% chance you do. There is now a test that can be given to those at risk to determine if they have the gene. If you watched a parent die of Huntington's disease, would you get tested? Sean and his siblings decided not to -- they didn't want to know for sure if they were going to get it. Other people want to know. If the test is negative, they can live a normal life and not worry about the gene. If it is positive they know they don't have to save for retirement, they know they need to do what they want to do early in life because late isn't likely to come. They may want to forgo having kids. What about you, would you want to know?