My little sister, Taylor, is blind. But her eyes – the color of a Milky Way candy bar and framed by long, feathery lashes – used to work just fine. Taylor, whose sassy but sweet disposition once helped her get the best of people twice her size, could tell you exactly what she wanted without saying a word – just by tilting her head and fixing those eyes on you (sometimes she’d cross her tiny arms across her chest for good measure).
I miss the sassy side of my sister, who these days is 100 percent sweet even though she has every right to be spitting mad at the world. I miss getting “the look.”
I’ll never forget the moment we first noticed something amiss with Taylor’s vision. We used to visit the North Carolina State Fair in Raleigh every October. One of the vendors served hush puppies (deep-fried cornmeal dumplings – a Southern favorite) in an old, dimly lit mill house at the fair. As we left the dark mill house licking our fingers in 2005, someone noticed that Taylor couldn’t find the stairs.
And so it began.
It took several years for Batten disease to steal all of the cells in my little sister’s eyes. First, she lost her night vision. Then, she lost her central vision. I still remember how, before Taylor went blind, she tilted her head in the direction of voices and other sounds so that she could see them out of the corner of one eye.
A few years after that day at the fair, we went out for ice cream following a day on the beach. As we walked by a shop that sells Christmas decorations year-round, Taylor made a remark about the Christmas lights in the shop window.
We exchanged anxious glances. My heart leaped into my throat.
Not long after that day, though, Taylor’s lights went out for good.
Eyes are powerful, expressive communication tools. But Taylor lost hers and so much more to Batten disease. My sister hasn’t made eye contact with me in five years. I miss looking into those Milky Way eyes and knowing they’re looking back into mine.
Now all I have to remind me of those moments is pictures. Lots and lots of pictures.