What Batten Disease Stole

By Laura King Edwards

If my sister didn’t have Batten disease, she would be a senior in high school this year.

But Taylor isn’t a senior. She isn’t taking classes, and her only extracurricular activity is physical therapy. She doesn’t have her driver’s license, and she won’t go to prom.

I’m friends with the mothers of some of Taylor’s friends on social media, which is how I keep up with what my sister would be doing if she hadn’t gotten sick. Her best friend from elementary and middle school, Charlotte, helped me with research for my memoir. When I interviewed Charlotte over my lunch break last summer, I couldn’t help but think how grown up she’d become and how much my sister had fallen behind.

I know Taylor’s friends are applying to colleges. I know some of them have gotten accepted to their first-choice schools. I never expected that to hurt so badly (though I’m happy for the other kids), because I never really thought about it until it happened. For a long time, I believed we’d beat Batten disease. It’s easy to believe when your sister is still laughing and singing and running 5K races and getting straight As in school. It’s easy to believe when you see other kids with Batten disease who can’t walk or see or swallow or talk and know your sister can still do all of those things.

Deep down, my toddler sister was a miniature version of me, despite her love for dresses and Disney princesses and the color pink. A born introvert with a tendency to turn bright red in the spotlight, I turned to my sister for comfort before I went on stage for the Carousel pageant competition at my high school.

Carousel pageant

When I got accepted to my first-choice college the week before Thanksgiving, Taylor danced the halls of our house singing an only slightly off-tune version of the school’s fight song, which she’d learned from the stuffed mascot whose hoof she squeezed until the music didn’t work anymore.

UNC acceptance letter

She cheered the loudest at my soccer games, even though she was the smallest fan. My regulation-size soccer ball came up past her knees, but I couldn’t wait to teach her the game I loved when she got a little older.

senior soccer picture

She wanted to be in all of the pictures on the night of my senior prom. I think she looks like she’s flying in this one, like a little fairy without wings.

graduation

She didn’t make it into all of the pictures at my high school graduation, but she still managed to be the star of the show. And even at 18, I dreamed of coming back home someday (because we all dream of growing up and living somewhere exotic, right?) to celebrate my little sister’s graduation and watch her become an adult.

IMG_7494

That was 15 years ago, and I haven’t left home after all; in fact, I live within jogging distance of the house where Taylor used to dance the halls dragging that stuffed UNC mascot by one fuzzy hoof – the same house where my parents recently had to install an elevator for my sister’s wheelchair. I should be getting text messages from my teenaged sister at ridiculous hours. I should be helping her with homework and college applications and girl drama and boys.

Instead, I help my parents lift her in and out of her wheelchair and hold her head up for the rare photo opportunity, because she can’t hold it up on her own.

This is supposed to be my sister’s last year of high school, and this holiday season is supposed to mark her last Christmas as a kid.

But this Friday won’t be Taylor’s last Christmas as a kid. Instead, it might just be her last Christmas.

And that’s why I hate Batten disease.

Share this...Share on FacebookShare on Google+Tweet about this on TwitterPin on PinterestShare on LinkedInEmail this to someonePrint this page


Leave a Reply

Your email address will not be published. Required fields are marked *