9 December 1983

The darkness I pushed away, the black fear walking at the edge of my consciousness, is here with me to stay.

They stuffed these words into my head: deformity, orbits, birth defect, genetics, coronal sutures, surgery, staged surgery, reconstruction. What is there to reconstruct? I failed at the construction. I was worried about his breathing. I kept asking about it. I worry it might stop. I listen to him breathe all night long. How am I to understand this?

They are sending us to Boston next week, to a doctor - the doctor who wrote “the book.” They showed me this book while we were in Norwalk Hospital. A photograph in it looked like Trevor: his exposed eyes, the beak nose. Did I do this to him? Was it me? The genetics people asked me so many questions: my family, my health, the pregnancy. They counted my fingers, asked me to take my shoes off and examined my toes. No one told me what happened to Trevor. They told me what he has, what he is now: a diagnosis, Crouzon Syndrome. They told me he needs plastic surgery, again and again – like an accident victim, like a socialite.

He is so sick so often. I am tired. My Mom cried. I can’t remember ever seeing her cry.

The night Trev was born six months ago, I was so happy to have another boy. I was afraid I wouldn't be good at a girl – such a silly thing to be afraid of.  Alone with Trev in the hospital room, I was excited, so confident, looking forward to the wonder of watching him grow. My thoughts were: I've done this before, I know what to do. I peered at his serious eyes, the odd shape of his forehead, and considered how he didn't look like any of us – no family resemblance. He looked like a wise old man.