I know Ecki already reviewed this book here not long ago, but having just finished it tonight myself, I wanted to post about it as well.
I'll start by saying that a friend sent this book to me a couple months ago and I have procrastinated reading it, being convinced that I would sob my way through the entire thing. This book has become well known enough in the parents-of-special-needs-children-blogging community that its reputation as a tear-jerker precedes it, so I had to really psyche myself up for it.
And indeed, having finished it about an hour ago after hardly being able to put it down for the last three days or so, I feel wrung out. I did not, however, cry my way through the entire book. In fact, there were only a handful of passages that had me in tears.
The book is Ms. Forman's recounting of the extremely premature birth of her twins, and the aftermath of that. Born at just 23 weeks gestation, the author and her husband wanted only to "let them go," knowing full well the probable ramifications of forcing these severely premature babies to live. But California law mandated that the attending doctors institute measures to preserve the lives of the twins. One of the babies, a girl, died four days later, and the other, a little boy, lived and wound up profoundly disabled: blind, cerebral palsy, dependent on a feeding tube, developmentally impaired, a devastating seizure disorder, and non-verbal.
And yet, the love and devotion of this mother to this baby - and to the daughter who died in her arms at four days old - transcends the horrors of multiple surgeries and dire pronouncements.
I identified with many of the feelings described by the author: the denial, the grief, the disbelief. But then I find myself thinking that my feelings of identification are arrogant. My son was born with Down syndrome and required major surgery at a day old, but his survival has never been in question, and although we live with the knowledge that he will always be developmentally and cognitively impaired, his disabilities seem like almost nothing compared to the trials the author and her family withstood.
All through the book, I kept thinking, on some level, that yes, they should have let the babies go when they were born so terribly early. Evan's life seemed to be one of great suffering, and it was hard not to think that it would have been better for him to have died with his twin sister. What was the point of it all? There are those who believe in a God who orchestrates all of our lives with some plan, that everything happens for a reason, a purpose. These are not my beliefs, and I have not settled on an answer to the question of "What was the point?" Just as I have never been able to settle on an answer to "What is the point in our having a child with Down syndrome?" or "What is the point in my husband having cancer?" Sometimes there just are no answers, there is no point.
But Evan was loved, and he loved. And maybe that was the point of his life.
Clearly, this story has affected me deeply and I don't think I'll forget it for a very long time. Read it. Mine's up for grabs if anyone wants it.