I actually stumbled on this book for the first time in middle school, or it even might have been elementary school. I spent the night at a friend's house, and she lent me this book. "It's so sad," she told me, "It's about a little girl who dies of claustrophobia." Which was a disease we had at least heard about. In reality, Alex suffered Cystic Fibrosis, but we couldn't quite sound out. I borrowed the book from her and read it a little in disbelief.
And no, I never gave the book back. She was more of a family acquaintance and after spending the day at the pool together I went back to her house for a sleepover, the one and only time I was ever there. I ran into her years later, and let her know I still had the book. Turns out she had never read it, while through the years I read it over and over.
Alex Deford was born in 1971. When she was only a few years old she was diagnosed with CF, which at that time was practically a death sentance. (When Alex was born life expentency for a baby born with CF was only around 10 years; now it's closer to 40.) What got me while reading this book was that Alex was barely younger than me when she died. I couldn't believe that I was reading about the life of a little girl, who died 4 years before I was even born. It was one of the first books I remember reading that really made me cry.
I haven't actually reread this book since college, but I have a feeling if I read it now it would hit me differently. Previously I saw much of the book through the eyes of Alex. But if I read it now, I'm sure the perspecive that would hit me the most be the author's, who in fact is Alex's father. And I can't imagine what it would be like to ever have to bury a child.
It's not an easy book to get through, but I wholeheartedly recomend it if you're up for it.
I, too, have read this, but I was very young when I read it. It really was a heart breaking story. Like you said, it would be even harder reading it now and having a better understanding of how hard it must have been for that dad to write it...
ReplyDeleteA book that stands out in my mind as being very sad is "What Remains" by Carole Radziwill. Have you read it? It's a memoir written by a woman who was close friends w/ the Kennedy family. She goes through so much, it is heart breaking, but it is really well written.