What's in the Box?

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 1,600 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.

Help Us Believe this Holiday Season

I just returned home to the east coast after five days in northern California to discover that Christmas is less than three weeks away. I'm a little behind, as I haven't begun shopping for my family and friends. And as for me? I'm a little old to be making lists, and the last time I checked, Santa Claus does not follow my blog (unless he does so anonymously). Anyway, I only want one thing this holiday season, and if you're reading these words, you can help - even if you don't wear a fuzzy red suit and make a hobby out of climbing down chimneys one night a year. The one gift on my list is the same gift I've been asking for every night since July 24, 2006 - the day Taylor was diagnosed with Batten disease.

I want to find a cure for this rotten illness. I want to save my sister.

You can give the best gift of all - the gift of hope - by making a donation to Taylor's Tale. I'm happy to report that you can even do your shopping online; our new Web site, launched earlier this year, offers secure donations via PayPal. Click here to make a gift now. Because we're a 501(c)(3) nonprofit, all gifts to our organization are tax-deductible, and every gift made to Taylor's Tale supports promising Batten disease research.

Taylor is at Duke this week for a series of tests while most of her friends are likely making their own wish lists and counting down the days till winter break. I sent my mom a quick email this afternoon to check on my sister. Her answer was short: "A trooper as always." And that she is. I think about how much my sister has lost. No words of mine can describe what has been taken from her. And yet, all she's asked me for this Christmas is a set of drums - my sister, the aspiring musician. I can find her a nice set of drums, but I want to give her more. She may not see it quite the way I do, but Taylor is an aspiring adult. How often do we, as actual adults, stop to consider how very blessed we are simply to have reached adulthood - to be alive and, more often than not, well? My sister, and a lot of other children like her, have never had that luxury. But in spite of all that has been taken from them, those aspiring adults are - and always have been - inspiring children. The most noble thing we can do as actual adults is help give them a shot.