Pizza is a Privilege

pizzaTaylor was admitted to Levine Children’s Hospital on Tuesday afternoon. When you’re fighting Batten disease, nothing is ever easy. But we’re all facing a crisis this week.

My mom used to be the queen of nighttime volunteer meetings, and growing up, we ate a lot of my dad’s grilled cheese sandwiches and Papa John’s pizzas for dinner. Taylor taught herself to read when she was 3, and I’ll never forget the day she read a picture book to me in the time that it took Dad to run into the neighborhood Papa John’s and pick up a pizza while we waited in the car.

I babysat my little sister more times than I can count. We spent a lot of hours snuggling on the couch in my parents’ basement, eating slices of plain cheese pizza, slurping Diet Coke through straws and devouring stacks of Disney movies on DVD. After I got married, we had a lot of pizza nights at my house. Mom and Dad packed a bag for her if they knew they’d be late, and when they finally tiptoed through the back door, they’d find Taylor curled up asleep with my dog, Daisy, dressed in pink pajamas and fuzzy pink socks.

When Taylor got older, she befriended Callie, who’s closer to my age and met our mom through another one of the community organizations she served. We had girls’ nights at Callie’s – Taylor, Mom, Callie and I. Callie always had pizza dough, and Taylor loved to make homemade pizza at Callie’s. She loved to feel the cool, sticky dough between her fingers. One night, we made chocolate cake to celebrate Taylor’s half birthday, even though it was almost a month away. My sister decorated the cake with lots of rainbow snowflakes, sprinkles and icing. Her vision was starting to fade by then, and that cake looked a lot like a Jackson Pollock painting, but I thought it was beautiful. We played Taylor’s favorite music and moved the kitchen chairs to dance, and the dogs ran between our legs. After dinner, we sang to my sister, even though it was only her half birthday. Callie didn’t have any birthday candles, so Taylor blew out a tea light in the middle of the Jackson Pollock cake.

It’s been years since my sister saw a sunrise, and she won’t walk without assistance again. So why is it so hard for me to accept that she’ll never eat another slice of pizza or a piece of birthday cake?

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14 thoughts on “Pizza is a Privilege

  1. I just read an article someone posted on FB about your sweet sister and all that your family is going through. I am so moved by you all … Taylor and your family will be in my daily prayers.

    • Thank you so much, Annette. I wish that I had never heard of Batten disease, but I know I can’t change that, and it gives me comfort to know that Taylor’s courage and the power of her story will help build a better future for people like her. Awareness is so important. Thank you for sharing!

  2. My prayers and thoughts are with you and your family. Dawn is my daughter and I am proud that she has been able to help with Taylor. God Bless all of you and Taylor!

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