I don’t talk about God or religion much here. It isn’t that I don’t think about them (or Him), but I’ve never been particularly comfortable talking about faith in the abstract or my faith, in particular. (Hey, I’m Presbyterian. We’re called the “frozen chosen” for a reason.) I’m not sure I understand what faith truly is. But what about grace?
Like no doubt many others when confronted with a major life struggle, I had those “Why me? Why my son? How could God let this happen to my perfect, perfect baby?” moments. I still do.
I had one of those moments on the way back from Thanksgiving when James had a seizure in the car. This was the holidays, it was supposed to be happy, we were supposed to be thankful for our blessings.
But what do you do when one of your blessings has a seizure, when seconds before you were thankful he was peacefully napping? When you thought he had outgrown his seizures and that wasn’t part of your life anymore?
You cry, you wail, you gnash your teeth. Your husband pulls the car over, and he cries. This is a man built of people who are salt of the earth, warm and solid Midwesterners. He rarely cries–he gets things done. When he’s feeling feisty, he gets shit done. But that Thanksgiving weekend, you cry together, even though the seizure is over in a matter of seconds and your son just looks at you afterwards with utterly peaceful eyes.
And your older son asks you why the car is stopped, and why Daddy is crying (he doesn’t bother to ask why Mommy cries, because he knows it is simply an essential bodily function for her, like her soul has to pee every day), and you have to explain to your infinitely innocent five-year-old that his brother had a seizure. It’s a word this precocious child heard every day of his life for a year after his brother was born, and yet it is a word he has never uttered. To hear him speak it is to feel the devastation of your baby’s diagnosis all over again.