This is a story about children born into circumstances that medicine cannot currently prevent and parents cannot possible prepare for.
This Lovely Life forced me to think about not only my responsibility to my fellow human beings but also what can reasonably be asked of a society’s member when they are dealing with stunted lives that, for the rest of the community, are only abstractions.
And this is so true of how I felt after reading this book. So many questions are raised about the rights and responsibilities of parents, doctors and even the government with regard to providing what some would consider extreme measures of care, and the answers are not clear cut from any angle.
It is also a story of how a person can adapt to an ever-changing definition of what life will be like, with new problems and diagnoses, new medications and therapies, new outlooks and prognoses around every turn. And how someone lives with grief – over both a daughter who never left the hospital and a son who did.