I’ve never been a huge fan of fishing; I don’t have the patience. I can’t stand it when I go long stretches of time without a bite or – worse – when a fish steals my bait. I like chilling on boats and beaches and riverbanks, losing myself in a good book or good conversation or simply soaking up the sunshine while other people fish.

Taylor has more patience than me – and more of a knack for fishing, apparently. My parents took my little sister out to a friend’s farm in a neighboring county late this afternoon and let her drop a hook in a stocked pond. Her catches grew more impressive as the shadows lengthened.

Fighting Batten disease, I’ve learned, is kind of like fishing. I have to be patient. If I spend too much time distracted by other things, I won’t be rewarded with progress. I have to keep an eye on the bobber. If I don’t, all of the fish might get away (and steal my bait!). But I’ve also learned that life, like fishing, isn’t fun if it’s all work and no play; if I’m 100 percent focused on the bobber all the time and never allow myself to look away – to read a page in my book or share in good conversation or soak up some rays from the sun – I’ll get burned out; I might learn to HATE fishing; and I might just let the big damn fish – the one fish we really want – get away for good.