The Veil Opened Briefly

As long as her world remained intact, I could pretend she still inhabited it.

I gaped at the woman in the mirror—her eyes reshaped by sorrow, distant, as if they'd been transplanted onto the wrong face.

In those early days after my daughter died, I found myself traversing a strange underworld, everything a prop, lifeless and remote. Unable to break the habit of hope, I kept looking for her. I visited her favorite hangouts in Ann Arbor. Late at night I’d listen for the crunch of her Honda wheels on the driveway. When no one was home, I’d call out her name, “Leta, Leta.”

In those early days, the veil opened briefly giving me a glimpse of forever, a fleeting moment of pure knowing. My opinions, beliefs, and judgements vaporized under the weight of unimaginable sorrow. In those early days, her scent infused the air, her music played on the radio, her friends occupied the same lives they shared with her. As long as her world remained intact, I could pretend she still inhabited it.

But by the second year, the last threads of hope unraveled. A flat landscape stretched before me, bled of color, the air thick as mud, the ground hardened. I preferred the wrenching pain of the first year to the tedium that followed.

I can’t say when I befriended grief, but it happened slowly, with countless setbacks. It showed up in unexpected beauty: the hush of winter breezes, the scent of stargazers, the movement of my own body swaying to a sad violin.

It took twenty-five years of starting and stopping before I found my way into the story I had to tell. In this Substack I will be sharing excerpts from my book, its working title, “No Sad Faces,” about my daughter who was not expected to survive childhood but when she was twelve, a breakthrough drug awakened the germ-fighting cells her body had been missing since birth. For the rest of her life she would struggle to find a new identity.

Our story is about more than medical miracles. It reveals how the emotional toll of chronic illness can be even more punishing than the disease. It’s a portrait of parenting with Mr. Death hovering, of growing up with an invisible illness, of a family’s quest to find normalcy in a perpetually interrupted life.