Many People Comment on My Child With Albinism, but This One Stood Out
When my daughter, Scotlyn, was born, she had high levels of jaundice, so they sent us home and told us to place her either in the sun or in front of windows in the sun. Five months later with a diagnosis of albinism under our belts, we now have strict instructions to keep her out of the sun. In fact, she has a whole wardrobe quickly filling up with full-body UV swimsuits, hats, sunglasses and soon a daily dose of head-to-toe sunscreen. I imagine we’ll get so good at spooning out tablespoons of Banana Boat, and lathering it between each finger and in the crooks of her ears, that it will turn into a ritual like brushing our teeth.
So earlier this week when a lady at the drug store told me my baby was the whitest baby she has ever seen, but will probably be the first teenager out suntanning, I just smile. It doesn’t end there, of course. She continues on about teenagers and tanning, and as I walk away, she turns to her friend to share whispers and stares at my fair-haired baby.
This scenario happens almost every time I am out with Scotlyn, but it’s a different store and a different woman. Their comments make me uncomfortable because they bring with them a fear that my daughter will have to grow up hearing how white her skin and hair is over and over again. I try not to let my mind play out these situations, which may or may never happen, but I can’t help it. Maybe she’s on the playground and a little boy wants to know why on the hottest day of the summer she’s wearing a long-sleeved shirt and sneakers instead of sandals. Or maybe she’s 16 and a girl in her class wants to know what she does to get her hair that white.
Scotlyn’s less than a year old now, but she might grow up to have low vision and may not always be able to perfectly see you, as is the case with most people with albinism. But she will always hear you, so I’d like to tell this lady, the future little boy at the playground or girls in her class to please choose their comments carefully.
Later, I returned to the same drug store with a sense of dread and was met with more comments. But this time as I left the store, it was the unmistakable tone of an older gentlemen. “Hey, miss!” he shouted. When I turned, I recognized him from the card aisle where I was trying to balance a basketful of baby items in one hand and Scotlyn in the other. I had to stop and put everything down, so I could hold her by both arms and let her bounce, her new favorite pastime. He continued talking as I strapped Scottie into her car seat. I half ignored him while I tried to get her out of the sun.
“It’s so nice to see the love you have for your daughter,” he told me. “I can tell you’re a good mom, so good job. They don’t stay that age for long, and I miss mine.” His comment took me off guard because it wasn’t what I was expecting to hear. On this day, we were just like any other mother and daughter out buying diaper cream. We left the store without remarks of whiteness, only a lasting impression of love.
To that gentleman at the drug store: thank you for seeing beyond the white hair and into our hearts.
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