What’s in a Picture?

By Laura Edwards

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.

Taylor in the snow

5 Comments On “What’s in a Picture?

  1. Julie Siebel Reply

    Laura, thank you for your poignant thoughts, I know how much Taylor’s battle has impacted all of you. She is so incredibly lucky to have you as her big sister!

    1. Member Laura King Edwards Reply

      Thank you for reading and for your kind words, Julie. I’m lucky to have her; she’s taught me so much!

  2. Debbie Dovel Reply

    I totally understand your feeling of wanting to have your sister make eye contact with you again. My son, who is now 23, started losing his vision to Juvenile Batten Disease at age 7, was legally blind by 8, and has gradually lost it all over the last 15 years, plus so many other things, just as your sister has. He was so full of “spit & vinegar” as I tell people who didn’t know him before he was blind. After he learned to walk at 12 months, he ran everywhere, until this dreadful disease took that away in time, too. I also long to make eye contact & see some expression in his eyes once again, to hear his feet running down the hall, and his endless chatter at the supper table. I know that one day in eternity I will enjoy those things once more, but for now, I’m thankful for each day he’s still here with us. We don’t think about tomorrow anymore, just live one day at a time, hoping for more good days than bad ones. Thanks for your articles. Please keep in touch. I’d love to visit with you. Tell Laura hello from Chad, someone who is experiencing life the same way she is, without anger and with so much courage. I found out that my son’s name means “brave warrior”, and it fits him perfectly.
    God bless you, Laura, and your family, too!

    1. Member Laura King Edwards Reply

      Thank you so much for sharing your son’s story, Debbie. I’ve never met anyone with Batten disease who lacked courage and an uncanny knack for finding happiness in the “little things.” I, too, have developed a greater appreciation for those things in the years since Taylor’s diagnosis. As you said, we just learn to take life one day at a time and believe that there are good days still to come. In the meantime, my memories, though always valuable, have become priceless. Thank you for reading my blog; I hope you will continue to follow it and keep in touch. I would love to meet you, Chad and your family someday! Blessings to you as well!

  3. Debbie Dovel Reply

    I meant to say, tell “Taylor” hello from Chad. Sorry!

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