I loved logic puzzles and games when I was growing up. I liked to figure out how to get everyone from one side of the river bank to the other safely, or which of five friends must have been wearing the purple hat and red shoes, and so forth. I especially liked when there was a sort of secondary element to the game. Like when you successfully moved all the animals, people, and personnel across the river, and then the game gave you an analysis of your opening salvo or strategy and a mini-personality profile. “You had the goats and the ferryman crossing together. This shows that you are uniquely creative but sensitive to critical remarks by others.” Or some such pablum. If I didn’t like my personality analysis, I could re-solve and get a different one. “The old woman and the chickens crossed together. You are a born leader who will strive to achieve.”
Right now I feel like I’m trying to solve my grief and Sarah’s death like some sort of puzzle and looking for clues to my future role to pop out and present themselves like fortune cookies. It’s not really working that well for me. A big obstacle is my compulsive tendencies. My internal monologue says constantly “Move along, move along, make goals, stick to a structure.” But the rest of my brain continues to perseverate and to cry at unpredictable times and to be consumed with thoughts of Sarah and our family life. I guess I’m just still deep in grief and that’s my identity right now.
A big reason why I started writing about Sarah and our family — and I don’t wish or need to call anyone out — is that in the immediate aftermath of Sarah’s death, a couple of people asked me, while conveying their condolences, if Sarah’s death was a relief to me. I was pretty stunned. I can understand from the viewpoint of an outsider that raising a severely disabled child is not a picnic and that we had to devote our lives to Sarah’s care. But would you ask a parent of a typical child if they were relieved if that child died? “Your son was shot last night by the police, you must be so relieved!” “I heard that little Aidan didn’t make it through her ear tube surgery, aren’t you relieved?”
I wanted the world to understand how wonderful Sarah was, how much we loved our family life, and how deeply and profoundly she would be missed, not in spite of her disabilities, but because of them as well as all her other marvelous personality traits. We are not relieved by her absence. We are devoid.
The First Year Without Sarah 