Thursday, August 27, 2009

Sherbet Chopsticks

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

Sunday, August 16, 2009

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 - 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.

Thursday, August 13, 2009


I had surgery on Monday morning to remove the larger of two hard, swollen lymph nodes on the back of my neck. For more than a month since discovering the second node, I've over-Googled and WebMD'ed "lymph nodes" and "Hodgkin's disease" and "lymphoma" and everything in between, and by the time I arrived at the hospital before sunrise on Monday, a part of me wasn't sure I wanted to get the results of the biopsy that would follow my surgery.

My surgeon's office left a voicemail on my cell phone sometime this morning - I was in a meeting. When I returned the call, the receptionist put me on hold for what seemed like an eternity; finally, the nurse came on the line and wasted no time letting me know that the node was benign. In the minute or so that I'd been on hold, I think I actually convinced myself that I had cancer, so when I heard a voice telling me otherwise, I wasn't even quite sure how to react. Quite frankly, I'd spent so much time imagining bad news that I didn't know how to handle good news, at least not right away. After the words had had sufficient time to sink in (all while the angel on the other end of the line stayed put), I rediscovered the reality of my own essentially good health and hurriedly asked mundane questions like "When can I play soccer again?" and "Can I take normal showers yet?" The ghost of cancer had drifted out of my life before we ever really got to know each other, just like that.

These past several weeks not withstanding, and especially if you eliminate stress as an indicator, I tend to take my own health much for granted. I assume that tomorrow, I will still be able to run and kick a ball and see the world all around me and hear its many voices and breathe its air and find my own words. But I cannot take a single day for granted.

My sister cannot take her tomorrows for granted, and unless I can learn to appreciate a world that does not include her, I won't be able to rest.

Taylor has Batten disease.

If that phone call today had been different? If they had asked me to come in to discuss the results rather than receiving them over the phone (what fun that drive to Matthews would have been)? What then? Well, I've already said how unsettling the thought of being diagnosed with cancer was to me - as it would be for anyone. But the truth is, even if that had been the case, I'd have been given options, at least. The wonders of medical science would have been waiting in the wings to receive me and give me the best shot decades of research could buy.

When T was diagnosed with Batten disease, we were given instructions on how to seek out support for what would, no doubt, be a very difficult journey - a journey with a predetermined ending. If I took that ending for granted, I wouldn't be posting right now.

Sunday, August 9, 2009

The Girls

Dad and Stephen headed up to Raleigh with two carloads this morning, signaling the unofficial commencement of my brother's senior year of college, so Mom, T and I kept each other company for the bulk of the day.

We began with a trip to the mall so T could pick out a new backpack for her all-important sixth grade year. Mom and I described in minute detail the colors and patterns of each and every girls' backpack Sharon Luggage had to offer, but in the end, the bag we left with won the day because it was "all pink." After leaving the mall, we were off to the neighborhood swim club, where we spent close to two hours sitting side by side on a towel spread out on the edge of the pool, sharing a bag of kettle corn and sipping Crystal Light as the August sun dipped behind the trees.

As much as we all love "the guys," I can't lie - there's something special about being one of the "girls" for me - especially these girls. I feel like the luckiest girl in the world to be able to name my mother and my sister among my best friends. In these trying times, we take care of each other more than ever before. Mom and I worry enough for everyone; T is our forever optimist (she announced today that when - not if, but when - she gets her driver's license, she wants a pink convertible like Sharpay; Mom proclaimed that if T gets her driver's license, she will have her pink convertible, by God, even if it has to be custom-built).

My mother's been taking care of me my whole life; I can only hope that I'm worthy of returning the favor. Sometimes, though, I wonder if perhaps T takes well enough care of all of us, all on her own.

Sunday, August 2, 2009

The Journey and the Destination

Yesterday morning, John and I packed up our hiking gear, dressed for a 10-mile-plus hike and drove 120 miles northeast of Charlotte to Pilot Mountain, N.C. We're going hiking out west in October and could use a tune-up, took note of the beautiful weather forecast for the day and wanted to get a jump on the surgery I'm scheduled to have a week from tomorrow. There were a lot of reasons to go yesterday.

Just as John and I pulled around the bend of the drive leading into the park office lot on the mountain, his truck shuddered, all of the console lights came on and the message board announced a transmission fault. We were eight hours from sunset two hours from home on a Saturday with a two-year-old truck that wasn't fit to put back on the highway. So our 10-mile hike turned into a 10-minute stroll in the woods behind the office as we waited for help to arrive. A little after 1 p.m., we were scrunched together in the back seat of a tow truck with 266,000 miles on the odometer, the driver and his wife up front with a pack of Camel Lights and a Bojangles paper bag between them. We were back at our dealership just over the South Carolina line by 4 and pulled a brand new truck off the dealer's lot into our driveway a few minutes before 5. We traded in our mountain odyssey for a game of tennis on our neighborhood court and afterward were treated to dinner by his parents, who felt sorry for us. All in all, a less-than-wonderful but still halfway-salvaged day. As we unwound at the end of the night, we reminded each other that the drive up to Pilot Mountain, at least, had been fun. Our road trips always are; as John likes to say, "it's the journey, not the destination, that matters most."

I've had many people remark, phrased in all different ways, about how T's diagnosis has changed me or how they think this fight into which I was thrust will make me stronger. How all my - our - efforts to help find an answer for Batten disease and save my sister can give me a fuller life. I'd call this road we're on - this fight we're fighting - a journey; I have before. I've marked each anniversary of T's diagnosis on my blog for the past three years, and I do understand the path that we're on, though some days that path is more well lit than others. But unlike the day John and I spent together yesterday - a day characterized by disappointment and misfortune but not all bad by the time sunset rolled around - I'm not sure I'll care so much for the larger journey if I can't reach the desired destination. The destination is the cure; the rest is all icing. But what good is all that icing if you can't eat the cake too?

Saturday, August 1, 2009

Grant Summaries Are Online

Summaries of research grants awarded by Taylor's Tale and our funding partners (Hayden's Batten Disease Foundation Inc. and the North American and Australian chapters of BDSRA) last month are now posted on our Web site. Click here to learn more!