When friends ask how my sister’s doing, I don’t know what to say. Explaining gene therapy comes more easily to me than answering that question. And I majored in English.

Taylor has “good” days and bad days. But Batten disease has forced us to adjust our expectations.

My sister has fought a brave, tough fight for many long years. She’s overcome a learning disability; gone blind; struggled with her speech; lost her voice; suffered seizures; gotten a wheelchair and a feeding tube. But she’s also learned to read and write in braille and walk with a cane and run two 5K races without the gift of sight. Most of all, she’s never forgotten how to laugh. continue reading →

This year got off to a rocky start. Never much for flashy New Year’s Eve parties, John and I joined my parents and my sister Taylor for a simple dinner at one of our favorite local pizza places. We felt sure we’d made a safe choice. But the staff had distributed noisemakers to the kids packed into the family-friendly restaurant, and the shrill sounds reverberating off the high ceiling sent Taylor spiraling out of control.

Before the pizza came she was lost in a new kind of seizure we’d never witnessed before. We whisked her out of the restaurant and back to my parents’ house, where we tried in vain to pull her out of a black hole. Though that episode ended, we all knew even then that it was a harbinger of things to come. We knew 2013 was officially over and life would never be the same. As if on cue, Taylor’s first wheelchair arrived on Mom and Dad’s doorstep several days later. Then this summer, when my sister should have been swimming at the pool or going to camp, she spent a week at Levine Children’s Hospital to have a feeding tube placed. This fall she underwent a second surgery, getting an implanted device that works like a pacemaker for the brain and is supposed to help control her seizures.

It’s been a tough year. But somehow my sister, whose voice Batten disease also silenced in 2014, still laughs at Stephen and John’s jokes and cracks a smile when she can sense the friends and family she loves are nearby. Somehow my sister, who at 16 has already lost more than anyone should have to lose in a lifetime, still finds moments of joy.

So as difficult as 2014 has been–as much as Taylor has lost and as painful as witnessing her immense loss has been for the rest of us–I have only gratitude here in the final hours of the year. Because every moment with Taylor is a great blessing.

What are your defining moments from 2014? What do you look forward to most in 2015?