Winter Song

Yesterday, I promised Taylor that if it snowed overnight, I would go sledding with her today.

This morning, I opened the blinds in my bedroom to find that a thin layer of snow, covered by a thicker layer of ice, had indeed blanketed my backyard. My house is perched on top of a hill that my four-year-old neighbor aptly named Mystery Mountain, though, and by the time John had shoveled the ice and snow from the curvy mountain pass (our driveway), we were too late to go sledding with T. When we finally arrived at my parents', she was already exhausted from flying down the slick streets on a sled with my dad and other neighborhood kids and their dads. Instead, I tromped down to the basement with her in my sledding outfit - leggings, warm-up pants, a thermal, fleece jacket and fleece hat - to play Wii bowling. I stood behind her and told her when to release the trigger to send the ball rolling down the virtual lane, and together, we almost beat Mom (who is ridiculously talented at some of the Wii Sports games, including boxing; today, she knocked me out with a killer shot to the kneecap). Just before John and I headed home, T and I played music together - she on her keyboard, I on her electric drum pad. We may not have gotten to fly down the frozen streets on her sled together, but we bowled, and we rocked, and she laughed and smiled. It was a good day.

Later this evening, John and I ate dinner in an unconventional spot - at the coffee table in our great room, by a crackling fire with most of the lights off and the shouts of kids outside, still sledding in the sub-20 degree night air, faint but close. Just as we finished, John happened to glance out the window and discover that it was snowing again - visible only by the flakes floating softly downward in a column bathed in the yellow light of the street lamp. As each flake completed its journey through the warm glow and out of sight, into the cold darkness of our frozen cul-de-sac, the neighborhood kids' shouts were silenced for a moment, and in their place I again heard T's laughter. I felt at once sad that I'd missed sledding with my sister and at the same moment intensely grateful for the afternoon we shared together instead. And as the last lonely flake left the light and entered the darkness, I smiled.

Sherbet Chopsticks

Sometimes you just have to stop and listen to the music.

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.