I am not a saint; I’m you.Sep 20, 2012
Before Random House accepted my book for publication, five other well-known publishers turned it down They found the mother –me – unsympathetic. By that, they meant they wanted me to accept the burden of a dying child with grace. They wanted me to be a heroine who would sacrifice whatever hopes I might have had for my own life and happiness and devote myself utterly to the wellbeing of my doomed child. They didn’t want me to be angry and sarcastic. They certainly didn’t want me to say the f-word. They wanted a saint.
And they weren’t happy about my relationship with my husband, either. When a young couple learns that their child has a fatal disease, they wanted a fairy tale husband and wife to run into one another’s arms. They wanted them to gaze into one another’s eyes and find love, comfort and support. Instead, too often when the real Larry and the real Mary-Lou looked into one another’s eyes, we found only our own grief and anger reflected there.
Peter died in 1980 at the age of 15 ½. Today Larry and I are in our 70’s. Pete’s brother Adam is almost fifty. He is married, and is the father of three healthy children, two boys and a girl. We have all survived and thrived. You’d think that by now I would want to move as far away as possible from thoughts of Peter, but I don’t and besides I can’t.
I have more to share. My intention is to write to you from the point of view of someone who has been where you are. You may well be luckier than we were. You have far more reason to hope for a cure than we did. And while you are hoping, I’ll do my honest best to help you keep your sanity, and even make you laugh.