My husband told me something profound tonight as I sat cross-legged on the floor of our home office, shuffling through pictures of a trip during which, three years ago this Saturday, January 15, we walked into a hospital thousands of miles from home and took a leap of faith – a leap that sadly never resulted in the miracle for which we hoped with all our hearts. On a day to day basis, he said I am weathering Taylor’s illness much better than in past years – that I am stronger, even though in some ways I am sadder. But Taylor has a degenerative disease, so the day-to-day is much more painful than ever before. That made me wonder, if my husband is right – if he knows me as well as I think he does – what changed in me to make it so.
Being that we are just a few short weeks removed from Christmas, I came up with a holiday-themed analogy to explain the change.
When Taylor was first diagnosed with Batten disease, I built myself up every single day, only to get completely torn down before the day was over. I was so focused on finding the one thing that would truly make it all better – for someone to tell me Taylor would live without lying to me – that I was miserable all of the time. It was as if each day was Christmas morning, and I tore the paper off the biggest gift box under the tree expecting it to be exactly what I asked for, only to realize it wasn’t that at all and be totally crushed as a result. It didn’t matter if the gift was nice. It didn’t make Batten disease disappear from our lives, so to me at least, it wasn’t nice at all.
I’ve been living with the knowledge that my sister has a fatal disease for more than sixteen hundred days. That’s a lot of Christmases and a lot of heartbreak, since not a single one of those gift boxes under the tree has ever had the miracle wrapped up inside. As time went on, I realized that I couldn’t always have exactly what I asked for. But while I never stopped wishing for the miracle, I learned to appreciate other things in those boxes – seeing a smile on my sister’s face, taking a long walk on a summer evening after the lightning bugs come out to play, hiking to the top of a canyon in Utah painted with a brush that could only have come from Heaven, being in the same room as the people I love. Those gifts enable my very survival. I know I might never receive the one gift I seek above all others, but that tragic, haunting realization can’t steal the other gifts away from me. They had my name on them, I opened them, and they’re mine.
We dismantled our ‘real’ fake Christmas tree over a week ago. But first thing tomorrow morning, I’ll unwrap another gift. I don’t know what I’ll find inside, but that’s the beauty of life – the unknown and the dreams that guide us. And who knows? Someday, I might just unwrap that miracle.