I am not sure why I picked up this book at the library. I think it was because I liked the title, and of course, I like to read memoirs. I feel like I am a “glutton for punishment”, too, becuase I discover the book opens with the author’s 24-year-old son dying. The whole time, even before I checked the book out at the self-check counter at the library branch, I kept asking myself, “Why am I planning on reading this book?” I knew it would make me cry.
It was really what the author had to say about grief and guilt that I needed to read. The author is a carried of Duchennes Muscular Dystrophy (DMD), and miraculously her (and her husband’s) older son does not inherit the gene. They are hopeful and have a second child, and so much think they will have a little girl (who may be a carrier, but will not die from DMD), that they even paint the baby room pink. Instead, they have a second baby boy and they find that he has inherited DMD. He is diagnosed after his uncle, who lived into his early 20s also, has died from DMD. It turns out author’s brother had DMD, the author’s uncles and the author’s nephews. It’s been a genetic “fluke” that’s been passed down in their family for generations.
After Jamie dies, Christine, the author, is extremely depressed, and finally all the guilt for Jamie’s life comes out. She won’t permit her husband to take any of the “blame”, “guilt” or any other descriptions that could be put on it. It was very powerful when her husband tells her that it is his fault, that the guilt doesn’t belong just to her. He took part in the creation of their son, too.
Near the end of the book when she is talking about what she has learned from all of her experience with muscular dystrophy, she says this:
“I’m not sure that you come back from grief stronger, wiser, tougher, or purer in spirit. Part of you, especially when you lose a child, comes back crazy. These days, Patrick and I are like a couple of helium balloons, keeping each other out of tress. When we get up at night for drink of water, we say ‘I love you’ to each other, and when we go anywhere, we hold hands. . . We tell too many people we love them too, and we cry much too easily. If you see us coming, and you want to run the other way, we completely understand. But it’s nothing we can help. . . To me, it all seems a miracle. . . In restaurants, I’m delighted to watch everyone swallow, and I’m delighted to follow the natural rise and fall of a sleeping chest. . . Some days, the pain of losing Jamie feels like a boulder on my chest, and on other days a pebble that sinks to the bottom of my show. . . The hurt is always with me. Beautiful days are tinged with a brilliant, hard sadness, as if each day Jamie won’t see is behind an unbreakable glass. My loss, my regret, color the seasons in a different way” (207-8).
It wasn’t the deaths recounted in this book that made me cry, it was this long paragraph. Do you come back crazy? And she so right – the natural rise and fall of someone sleeping is so incredibly beautiful. Just last nigh, I was listening my wonderful, lovely husband breathing while he was sleeping. And missing our little Samnini so much.