mir*a*cle

mir*a*cle - noun. 1: an extraordinary event manifesting divine intervention in human affairs / 2: an extremely outstanding or unusual event, thing, or accomplishment

On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I'd never met walked up to me, squeezed my arm, looked right into my eyes and asked the question that forever looms in our anxious hearts: "Is she going to be okay?"

She is my sister, Taylor, who at that moment sat less than 10 feet behind me at our family's table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman's searching eyes, I offered only the following: "We still believe in miracles."

I dodged the woman's question, I know - but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor's survival more clearly defies all logic.

When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.

If my sister should beat this disease - that will be a miracle, and when it happens, I will fall to my knees, look up at the sky and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.

I'm still waiting for that miracle. But I've witnessed other miracles along the way.

Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every 'normal' experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, 'Will she be able to handle it?' and 'Will this be her last one?'

As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor's hand and lead her onto the dance floor if no one else would.

But my fears were unnecessary.

True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form - an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.

The Greatest Gift

This coming Wednesday, August 19, Taylor will turn 11 years old. John and I bought her birthday present today - a Yamaha keyboard.

I imagine T will love her gift - music defines her. The keyboard, though, is a material thing. It holds the key to hours of happiness but not years of life. So in honor of my sister's birthday this year, I hope you'll consider making a gift to Taylor's Tale, thus enabling the miracle workers that are the Batten disease researchers to unlock the secrets to this tragic disease and write the happy ending for all children facing it. Supporting the search for a cure is easy: visit our Web site here to make a secure donation online.

We took a leap of faith last month when we joined our funding partners in awarding four grants to support research over the next year. We've taken on a big funding commitment in a difficult economy, but Batten disease is not waiting on the economy to get better. It continues to march on, so we chose to take a leap and believe, rather than hold back and simply watch it fade into the distance while more and more children lose their battles with it.

Yesterday, John and I stole away to the western North Carolina mountains to Mt. Mitchell, the tallest peak east of the Mississippi at over 6,600 feet. As we hiked through its forests and meadows, the clean mountain air and soaring views awakened me; reminded me that there is a God and that there are miracles. There are different definitions of miracles - dictionary.com lists four:

• an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
• such an effect or event manifesting or considered as a work of God.
• a wonder; a marvel.
• a wonderful or surpassing example of some quality: a miracle of modern acoustics.

Curing Batten disease will be an extraordinary event in the physical world, but such a feat does not surpass all known human or natural powers. The scientists who study Batten disease have the power to reach the summit; you and I must simply give them food and water for the journey. And when they do ascend that final peak and thus give life to those children whose dreams are too vast even for the seemingly endless landscape of the Appalachian Mountains, it will be a wonder; a marvel; and I will get on my knees and give thanks to God for the miracle He has created.