The Hardest Question

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.

When friends ask how my sister’s doing, I think they want me to say she’s doing better. That would be the best answer for everyone, right? Why can’t it be true? Modern medicine is amazing. We almost always have a fighting chance, even if we’re battling the worst kind of cancer or coming back from a massive heart attack or stroke. And miracles happen every day.

But I’ve come to understand that my little sister is not going to get better. Because she has Batten disease, and it’s a ruthless monster, and we don’t have a treatment for it yet. I believe we will – and I believe Taylor’s Tale will be one of the reasons we get there – but we’re not moving quickly enough.

I haven’t been writing as many blog posts lately because I’m writing a book. I’m telling my story, and my sister’s story.

It has been a journey of self-discovery. I thought it would be hard to experience some of our worst days again, like the hot summer day we got the diagnosis. But reliving all of the happy times with my sister has been more difficult than I ever imagined. An endless movie reel plays in my head when I’m writing and driving and running and sleeping. I love remembering Taylor as she was before Batten disease robbed her of so much. The book has taken me back to snow days and pedicures and Disney World and movie nights. But I hate seeing those memories in my head and knowing that’s what they are – memories. I hate Batten disease for stealing my sister’s bright light. How can one little “rare” disease take so much?

I don’t want people to stop asking about my sister, even if I struggle to answer. I don’t want people to stop caring about this fight. Taylor wouldn’t have quit. And if we quit, there will always be another Taylor.