Slowly, my fear of a diagnosis turned into a burning need for one

I

sat in the rocking chair in the dining room, head and eyelids drooping, until reality hit and I jerked into wakefulness once again.

This was the second week, or maybe the third, that I would lie at night listening to silence, conjuring up images of things worse than death, until the specter of them drove sleep far away.

I’d creep out of bed, settle myself down in the chair with a blanket and a Tehillim, and string together the age-old words until morning met my gritty eyes.

My precious baby was just… not. Not reaching developmental milestones, not eating properly, not looking like a normal baby should look at that age. And I was not. Not sure where we were going, not adept at working around an unfamiliar medical system, not fluent in the language.

But I knew enough to understand the neurologist that day when he told me, a young frightened mother, that the syndrome we were testing for was very bad.

“How bad?” I wanted to know. “Do kids… die from it?”

He looked at me and, without thinking of the consequences of his words, uttered with finality, “Oh, worse. People wish they would die.”