Posted inEditor's Pick

In the Grand Scheme of Things

Hana Schank | Longreads | August 4, 2015 | 2,634 words

What one mother learned after she discovered her daughter had albinism.

Posted inNonfiction, Story

In the Grand Scheme of Things

What one mother learned after she discovered her daughter had albinism.
Illustration by: Kjell Reigstad

Hana Schank | From ‘The Edge of Normal’ | June 2015 | 11 minutes (2,634 words)

The following is an excerpt from The Edge of Normal, Hana Schank’s story about what it’s like to raise a child with albinism, a genetic condition whose most striking characteristic is white blonde hair and pale skin. Many people with albinism are also legally blind. Writes Schank, “The story is not just one of life with an unusual special need, but also the story of how I’ve changed, and continue to change, as I help my daughter navigate the world.”

* * *

Two weeks after the pediatrician had introduced the word “albinism” to my vocabulary, my husband and I sat in the stuffy waiting room at the neurologist’s, gently rocking my daughter’s car seat. This was the man who would tell us what was going on with my perfect-imperfect daughter. There was still a chance the pediatrician was wrong. After all, everyone else agreed it was probably nothing. Or a brain tumor or cancer. Those were also things that could cause nystagmus or visual impairment. But it was probably nothing. Or albinism. Or nothing. It was probably nothing.

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