It’s Saturday night, and my parents are out celebrating a friend’s birthday, so Taylor and I are watching Ella Enchanted at their house. Right about the time the pizza I’d baked disappeared and I started the movie, my husband and brother fled to my house three miles down the road, allegedly to put up drywall in our kitchen (we’re renovating) but more likely to avoid having to watch Ella Enchanted.

When I was 12, I wouldn’t have watched a movie like Ella Enchanted even if you tied me down in the chair (I would have figured out a way to escape or, if my attempts failed, squeezed my eyes shut and stuck my fingers in my ears). When I was 12, I wore cutoff denim shorts and Charlotte Hornets t-shirts. My most prized possessions were my Legend of Zelda Nintendo game (my brother wasn’t allowed to touch it) and the black and orange Nike cleats that matched my middle school soccer jersey. Seventeen years later, I’m mostly that same girl. I like pedicures and expensive haircuts, but I’m still happiest in old jeans or Adidas pants and long-sleeved t-shirts or stretched-out Carolina sweatshirts. I still play video games and, when I’m not injured – which is rare lately – soccer. But my sister is a girly girl to the core. She likes sparkly jewelry and cute skirts and movies about princesses.

In spite of our differences, I love hanging out with my little sister. Even when she was still a toddler, I imagined going shopping or getting our nails done together or helping her plan her wedding.

I was only a month removed from my own wedding nearly five years ago when the Batten disease diagnosis tore my dreams into a million tiny little pieces. And now, though I still cling to my belief that we can find an answer to this monster in time for Taylor, I can’t escape the disease, even when we’re happiest together. Even tonight, as T listened to her movie and smiled, she dutifully swallowed each of the nine pills I put in her delicate little hand.

I hate this disease. I hate everything it represents. I hate it for all that it has stolen from us and for all that it will steal in the days to come. I hate it for threatening to steal my little sister from me. And yet somehow, through all that hate, I still find happiness in the most unusual places, like shared princess movie nights.

Over at my house, the guys have probably wrapped up in the kitchen, put the tools away and retreated to the great room to play Xbox and drink beer. I may be a video game and soccer-playing, old sweatshirt-wearing kind of girl watching a princess movie on a Saturday night with a 12-year-old dressed in pink pajamas and fuzzy pink socks, but I still think I got the better deal.