Talking to God Among Fireflies

Taylor will have surgery in the morning.

Tomorrow is the first day of summer. There’s a special magic about the longest days of the year, especially when you’re a kid; diving into the deep end of the pool and feeling the cold travel through you; eating popsicles on the porch railing till the juice dribbles down your chin; playing outside till the crickets chant and the fireflies light the shadows between the streetlights.

No kid should spend the first day of summer in a hospital.

Some people told us this surgery is a good thing, considering the circumstances. It will make things easier, they said.

I understand what they’re trying to say. And I’ve never hid from the reality of Batten disease, even that first summer we knew, when my sister still ran and jumped and sang and her eyes still saw the fireflies. But while I agree this surgery is necessary and even that it will make things “easier,” I don’t think it’s a good thing. Taylor won’t taste her own birthday cake when she turns 16 in eight weeks. Nothing about Batten disease is good.

I ran a solo 5K for Taylor tonight, because my legs wanted and needed to run for Taylor. Near the end of my run, I found myself on the gravel path around the pond in my neighborhood. As the sun dropped below the horizon, the fireflies came out to play. I stood in a stand of trees to watch them, and as I did, I found myself talking to God. I asked Him to give my sister strength, because that’s what she’s given me.