My friend, Hallie, is a writer I met in the magazine world. She has a little girl with Down syndrome, and she is one of the only people I know in our circle who has a kid with special powers—a special bond we share. She also has a son, Teddy.
Welcome to Iceland
Four months ago, Hallie had a third child, Geoffrey. Last week, she found out he has albinism. She wrote a very moving post, Welcome To Iceland, and I'm sharing part of it here. If you know of a mom of a child with albinism, or of a mom who has child with congenital vision loss (one of the effects of albinism), please connect them.
Welcome to Iceland
Geoffrey has albinism.
We learned this on Thursday.
Jamie and I have both known in our gut for a while that something was “off”. We noticed—and worried—about the fact that Geoffrey wasn’t making eye contact. We noticed that his eyes kept darting back and forth, from left to right, in a way that made him look shifty eyed. We noticed he’d smile and laugh if we said his name or tickled him, but if we looked straight into his eyes and smiled, we’d get no response. We noticed that he wouldn’t reach out for objects unless they were right in front of him, or that if given an object he wouldn’t look directly at it but instead would explore it with his hands and mouth.
We talked about it with each other but we thought we were being paranoid. As the parent of one child who already has a disability, we are so sensitive to even the slightest hint of something wrong. Geoffrey was meeting his other milestones on time or even early. We decided to carefully watch, and wait.
At Geoffrey’s four month checkup on Wednesday, his pediatrician diagnosed him with nystagmus, a condition where the eyes move back and forth. We saw a pediatric ophthalmologist on Thursday, who examined our son and explained to us that he has albinism, a condition where there is a lack of pigmentation (color) in the eyes and often in the skin and hair as well. It’s this lack of pigmentation that leads to vision loss.
Needless to say, we are stunned. We never in a million years imagined this could happen.