Monday, May 24, 2010


Last night, my mom and I took Taylor to see the Broadway show Wicked on the wings of someone's kindness. It was an amazing production - one my mom and I both left saying we'd see again in a heartbeat. Near the end of the first act, when Elphaba (a.k.a. the Wicked Witch of the West) rose high above the stage crowned by an eerily beautiful blue light, every single last little white-blonde hair on my arms stood up. But when my sister squeezed my hand and laughed out loud at the billy goat professor Doctor Dillamond's baaaaaahhhs, my heart soared.

Thank you to our anonymous angel for the gift of a memory my two favorite girls and I will never forget.

Thursday, May 13, 2010

Anonymous Angel

Last weekend, my mom asked me if I believe everything happens for a reason. I didn't really give her a straight answer. You see, I used to think everything happened for a reason. Then, after 24 years, four months and 23 days, I learned that my sister was born with a defective gene that affects her ability to produce an important enzyme, giving her Batten disease. In the three years, nine months and 13 days since that crushing diagnosis, I still haven't landed on any good reason for Taylor to be sick. 

I had a rough start to my week. Then, Tuesday night, I had a late soccer game. We were all stretching on the sidelines before the game started when the lights suddenly went out. That gave us about 20 minutes to kill in the dark while we waited for a few phone calls to be made and the lights to warm back up. So as we were standing there, we talked about random things. One of my teammates mentioned she had three tickets to Wicked that she needed to sell. She'd already seen the Broadway show about the witches of Oz, she said. I said my little sister, who is sick, would give anything to go. She told me she'd sell the $80 tickets to me for $65 apiece. 

Taylor loves The Wizard of Oz. She collects Dorothy snow globes and has wanted to see Wicked very badly for a very long time - ever since our good friend, Callie, told her about it. So of course I told my teammate I'd buy the tickets. 

We had another game tonight, so I headed to the field with a $195 check made out to my teammate with the tickets. When I got there, I told her we could just make the exchange after the game. She responded by saying we should make the switch before we played - that she wanted to talk to me anyway. When we got out of earshot of the rest of our team, she told me she didn't need my check. She wasn't allowed to say who, but someone on the team had bought the tickets for me. 

On Monday, I was gearing up for a really bad week. I could feel myself heading downhill on the never-ending roller coaster. But as I drove home tonight, I counted three great acts of kindness directed at my little sister and our family in less than a week: the first two by T's classmates, and the last by an anonymous angel who plays soccer with me once or twice a week. 

I still don't think everything happens for a reason. Until T is cured, any silver lining in her disease will elude me. But I do believe that T attends the school she does for a reason. And I do believe that those lights went out on the field Tuesday night for a reason. Thanks to a lot of compassionate kids, Taylor's Tale is $1,250 closer to awarding another year of funding for an important research project this July. And thanks to my anonymous angel, on the evening of Sunday, May 23, I'll get to see my sister smile big enough to get me through the inevitable dips in the roller coaster.


I've dedicated several posts on my blog over the last two years to Taylor's Girls on the Run experience. It was, in a word, inspiring.

The mission of Girls on the Run is 'to educate and prepare girls for a lifetime of self-respect and healthy living.' The program changed T's life, alright. Blind and fighting Batten disease, she completed her first 5K with her running buddy, Mary-Kate. Five months later, she crossed the finish line again. Throughout her stint on her school's Girls on the Run team, she overcame obstacles no one should ever have to face. When it was all said and done, I think my little sister believed in herself more than she ever had before. And in the meantime, she changed a lot of other people's lives, too - including mine.

T aged out of Girls on the Run last May - the end of her fifth grade year; Girls on Track, the Girls on the Run program for sixth, seventh and eighth graders, is not being offered at her school. But despite the fact that she no longer stays after school to run laps around the track with her classmates, T is still a part of the team.

Yesterday morning, my parents learned that the girls on this year's team were having a bake sale in the school cafeteria; the event served as the community service project all teams complete as part of their curriculum. After just a short time selling cookies, cupcakes and all kinds of sweet treats, the girls had raised $750. The beneficiary of their hard work and dedication? Taylor's Tale - and the search for a cure for the disease their former teammate is battling.

In my last post, just two night ago, I talked about the kindness of T's sixth grade classmates - the ones who have been her friends since she arrived at Fletcher almost four years ago as a girl who could still see (mostly) and who had just been slapped with a diagnosis of Batten disease. Tonight, my heart is filled with hope thanks to the younger girls who now follow in her footsteps - literally - running laps on the same track at Fletcher several days a week, completing the same 5Ks twice a year and - most importantly - believing in themselves. They may not know it, but they've accomplished something else through their kind deeds. They've given a desperate big sister a reminder of all the good there is in this world. They've given this desperate big sister reason to believe.

Tuesday, May 11, 2010

Simple Kindness

I have worried so much about my sister lately - for all of the regular reasons, of course, but also because she's in the sixth grade. Middle school was tough for me. My awkward stage dragged on for about three years. I liked to play soccer and build forts in the woods and play video games and wear t-shirts and jeans - not exactly the ticket to popularity for a girl going through puberty. It wasn't until much later that I realized most of my classmates were going through their own confused versions of growing up. This year, I've watched T face all of the normal challenges an 11-year-old girl faces in addition to the challenges of losing her vision and fighting Batten disease. She's done it with a smile on her face - and unlike her big sister, she's never been too afraid to follow her heart.

A few weeks ago, several of Taylor's friends dreamed up the idea to have a fundraiser at school for Taylor's Tale. They got approval from the powers that be, organized and promoted it. Last Friday was the big day. T's classmates paid a dollar to wear pajamas to school. Several of the girls' moms made popcorn in advance, and the girls sold snacks during lunch. At the end of the school day, T's friends handed my mom a bulging envelope decorated with sticky notes that told the story: the kids had raised nearly $500.

That night, the girls and their moms hit uptown Charlotte for girls' night out, featuring dinner and a play. It wasn't until much later that Mom and T returned home, where T put on her pink and orange polka dot pjs for the second time that day and climbed into bed. She was exhausted, but she went to sleep happy.

I want to thank everyone who had a hand in what turned out to be a great day for Taylor's Tale and the fight for a cure for Batten disease. Most of all, though, I want to thank the girls who take care of my sister the five days a week they're all in school and whose love lifts her up on the days they're apart. Sometimes, the greatest act of all is simple kindness.

Wednesday, May 5, 2010

Fly High

I was driving to the office this morning, counting the hours of good sleep I've gotten lately (very few) and wishing I was still in my bed. But then, rush hour traffic graced me with yet another red light, and as I sat there in my car, I suddenly stopped thinking about when I would get to my email and discovered the way the leaves of the big, old trees, silent sentries watching over Providence Road, filtered the morning sunlight. And I knew then that if I was still asleep, I would have missed that.

Taylor has never once forgotten to look for joy in the most unexpected places and has a knack for finding it when most of us would just pass on by. She can't see her movies, so she listens. She couldn't see the over-the-top production side of the concerts she's attended the past several years, but she can sing the lyrics to every song and will be the first to tell you that the Jonas Brothers are 'hot.' She couldn't see the blooming flowers and blue sky Mom and I saw as the three of us took a walk recently, but she proudly held Sunny's leash, felt the cool spring breeze on her face, put one foot after the other and never once complained that she was the only one who couldn't enjoy the azaleas. And though she needed my help finding each rung of the ladder on our cousins' playground set when we visited them last month, when it was her turn to swing, she swung higher than anyone. She had a huge grin on her face, and she reached for the sky.

Fly high, Teaser. I love you.

Monday, May 3, 2010

ourboys 5K

This Saturday marks the fourth annual ourboys 5K to benefit the Batten Disease Support and Research Association (BDSRA). The event starts at 8 a.m. at Harris Road Middle School in Concord, N.C. The event includes a 5K walk/run, one-mile fun run, children's games, activities and a car wash. To register online, click here.

In addition to funding research, BDSRA provides much-needed support services to families all over the world. To learn more, click here.