The End of the Rain

Tonight, John left the house to pick up takeout for dinner only to call moments later to tell me I should go downstairs and look out the window. Three days of rain had just ended with a break in the clouds and the blue-orange glow of an after-rain sunset. And across the street, rising up out of the houses and trees to reach for the heavens, was a rainbow. I stood just inside the open front door and gazed at it for a long while until Daisy appeared, darted through my legs and made a mad dash for the girls who were puddle-jumping in the cul-de-sac, breaking the serenity of the moment.

I'll only pick up a penny if it's heads up, and I make a wish every time birthday cake candles are lit - even when they're not for me. I've worn the same t-shirt for each of the Tar Heels' games in this year's NCAA men's basketball tournament and have it in the wash right now for their Elite Eight game tomorrow afternoon. I make fun of horoscopes but still read mine - and none of the others - in magazines. Nearly three years ago, as I packed for the North Carolina mountains, I included items chosen with care - one old, one new, one borrowed and one blue - for my wedding day. I make wishes on stars and rainbows.

This morning, I got a wild hair and cleaned our home office. And the guest room closet. And our closet. And then, as I sat Indian-style in the floor of our closet sorting through a mountain of clothes destined for the out-of-season plastic bin or Goodwill, I came across the white Bobcats t-shirt John got when we went to the first game in the new arena uptown. Just below the right shoulder is a tiny smear of black - the permanent stain from the mascara I was wearing the day Taylor was diagnosed with Batten disease. I remember, as if it was just yesterday, how I cried as he held me. We were both squeezed onto one of the dining room chairs, surrounded by boxes bearing the wedding gifts for which we had yet to write thank-yous, and the meager dinner we'd cooked sat uneaten on the borrowed glass table. Daisy watched us silently from across the room, her bright eyes searching mine. John's parents had heard the news and were on their way over to cry with us.

Without a moment's hesitation, I chucked the Bobcats shirt into the Goodwill pile, face down so the stain was hidden. The feeling of empowerment I got from that small act, though, was short-lived. When, just minutes later, I carted an out-of-season-but-worth-keeping pile up to the guest room for storage, my eyes fell upon the teddy bear T and I built together at the Build-A-Bear Workshop just hours after the diagnosis, the bear whose twin watches over my sister from its perch in her bedroom as she dances and sings and spends time with her American Girl dolls. And as I stood there alone in the middle of my guest room and listened to the fat drops of spring rain pelt against the window, I cried all over again.

And yet, hours later, there was the rainbow, hung by divine hands up there in the sky like a guardian angel. Below it, the grass was green and lush and full of life, and the trees, peppered with green buds and cottony white and pink spring lace, expanded their lungs and inhaled the fresh, clean air. I closed my eyes and made my wish. And then, as the sunlight dissipated and evening blanketed the quiet street, I turned on my heel and closed the door behind me, walking right past the stack earmarked for Goodwill without even a fleeting moment's thought for the tear-stained shirt.

The Little Things

Taylor, Mom and I are on the South Carolina coast enjoying a few days' respite.

I used to wonder if there were more Bargain Beachwears and cheesy Putt Putts than grains of sand at this oceanic collection of high-rise condos and tourist traps. My grandfather loved this place because he was a golfer, and the Grand Strand is a golfer's paradise. In a single day, you can play nine holes, eat lunch and dessert at Greg Norman's restaurant, play the back nine and eat overpriced seafood at a different restaurant for dinner, no problem. My grandfather passed away one chilly weekend in early December when I was 15 and playing in a soccer tournament in Athens, Georgia, but we still come down here. If we come by way of SC 9 (I call it "Back Road 9," and not affectionately, either), we pass by Tony's Restaurant, which serves great Italian fare and is not a chain like its neighbor, Carraba's. Granddaddy hated the smell of marinara sauce and wouldn't have pizza or pasta in his house, even when my dad and his brothers and sister were growing up. But I love Italian, so every summer when we came down, Granddaddy would make a reservation for dinner at Tony's one night. It was a little thing, but it made me feel special nonetheless.

We've been here almost 24 hours now, and the worries we left behind in Charlotte already feel a world away. We made it out to the beach late-morning and just sat watching the ocean with our toes in the cool sand for awhile. Then we played catch until T announced that she was ready for lunch. She's pretty good at catch - you just have to give her a heads up before you throw the ball and talk to her before she throws it back so she can locate you. When the girls went upstairs, I went for a run on my own. The people are more scattered this time of year, so the beach doesn't resemble a mosh pit. I was able to find a good lane right above the water line, where the sand's only slightly wet and not too soft, and after a few minutes, I turned off my Ipod so I could listen to the waves and the occasional seagull. It was the most therapeutic run I've had in weeks.



Though I packed enough clothes to stay two weeks without ever doing a load of laundry, I forgot some key items - I always do - so after watching my Heels get a decisive win in the first round of the NCAA tournament sans ACC POY Ty Lawson (my mom, who doesn't follow sports at all, now calls him "The Toe"), I decided to walk up to the CVS on the main road. Mom wanted to get a walk in, so we convinced T to tag along by promising that she could pick something out once we got there. We walked three abreast to the drugstore and perused the aisles, discussing the merits of Maybelline vs. L'Oreal mascara and ways to get my feet sandal-ready (soccer and running take a toll on my feet, which aren't pretty to begin with). Meanwhile, T decided she needed a mirror for her purse and lip gloss. On the way home, we didn't make it one block before T decided she just couldn't wait to apply her new lip gloss, to which I pointed out to Mom that it was a good thing at least one of her girls turned out girly! The only thing I applied to my lips at age 10 was Chapstick.

So here we are now, enjoying an excitement-free night in the condo. T's retreated to her room to watch a DVD, Mom's prepping for T's upcoming school presentation on Helen Keller and I'm glued to the TV for the night games (currently I'm watching Clemson lose to Michigan). I realized a long time ago that I didn't need the kind of manufactured fun found in excess at North Myrtle Beach to, well, have fun. The last couple of years of our lives have only reinforced that.

I'll always try to be honest here - so I'll say that I live in constant fear of what tomorrow may bring (or rather, what Batten disease may bring tomorrow). So, just as countless others who, like me, dearly love someone who is facing a life-threatening disease, I have many things that I want to do with my sister, and I always feel as though I can't do them quickly enough. My sister once said she wanted to go to Hawaii; I want to take her to Hawaii. She is a Disney fanatic; we took her to Disney World before she was diagnosed with Batten disease, when we still believed she was only losing her vision; she wants to see the Jonas Brothers on their world tour; I am disappointed that they are not coming to Charlotte. But what I have to remember - what all of us have to remember - is the joy we can extract from the simplest of activities, like our impromptu game of catch on the beach or our girls' night at CVS. As much as I want T to have happy memories, I'm not convinced that we have to have countless so-called exciting adventures for that to be possible. I want her to remember the fun time we all shared at Disney World, but I also want her to remember - and I want to remember as well - the times we've spent snuggling on the couch or sharing an $11 cheese pizza, drinking Diet Cokes through straws and talking about boys and clothes, as we did when I took her on a "date" one night week before last. Even if we could afford all of the adventures, sometimes I just want to enjoy my sister's presence without it being overshadowed by the experience or the landscape around us. My grandparents took me on an amazing trip to New York City when I was eight years old; we stayed in the Hilton, rode in a stretch limo all over Manhattan, went to fancy restaurants and museums and the World Trade Center and FAO Schwartz, but that trip is not what I remember most about my relationship with my Granddaddy Parks. No, what I remember the most is watching Winnie-the-Pooh together in the TV room just down the hall from where I sit now - and those dinners at Tony's.

Two Choices

John and I went bowling with Taylor and my parents tonight. T is the undisputed Wii bowling champion around here, but I'd never seen her hold a six-pound ball and roll it at real-life pins. I'm not too shy to say here that she tied me tonight, fair and square. I led her for most of the night, but she drew even with a strike - a strike! in the 10th frame. Between turns, she chattered about two different excursions to the mall last night and today on a quest for a pink skirt at Justice. At one point, she described how a woman at the mall stumbled and fell, at which another shopper burst out laughing. On the side, my mom explained that the woman who fell was handicapped, and that though T had no way of knowing that, my mom had looked on incredulously at the woman who laughed at her. Compassion, it seems, is not a universal trait.

It does exist, however. My mom sent the story below, entitled "Two Choices," to me recently; a good friend shared it with her. It is a story that would have been moving on its own but was even more touching for me because there have been many similar instances on Taylor's behalf. Just as I'll never forget those who have supported Taylor's Tale, I'll never forget those who put my little sister's happiness first. My sister may have physical handicaps as a result of her disease, but her spirit is anything but weak. All those who have brought a smile to her face hold a place in my heart forever.

At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does, is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?" The audience was stilled by the query.

The father continued, "I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child." Then, he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps. I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team, and we'll try to put him in to bat in the ninth inning.'

Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base, and Shay was scheduled to be next at bat. At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible, because Shay didn't even know how to hold the bat properly, much less connect with the ball. However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact.

The first pitch came, and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher. The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out, and that would have been the end of the game.

Instead, the pitcher threw the ball right over the first baseman's head, out of reach for all of his teammates. Everyone from the stands and both teams started yelling, 'Shay, run to first! Run to first!' Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled. Everyone yelled, 'Run to second, run to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball; the smallest guy on their team now had his first chance to be the hero for his team. He could have thrown the ball to the second baseman for the tag, but he understood the pitcher's intentions, so he, too, intentionally threw the ball high and far over the third baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases towards home. All were screaming, 'Shay, Shay, Shay, all the way Shay!' Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base and shouted, 'Run to third! Shay, run to third!' As Shay rounded third, the boys from both teams and the spectators were on their feet screaming, 'Shay, run home! Run home!' Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.

"That day," said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world. Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his mother tearfully embrace her little hero of the day!"

We all can make a difference.

I am inspired by the acts of kindness - all great - that have been bestowed upon my little sister by her close friends and by perfect strangers. I have watched her friends - and children her age are often preoccupied with their own acceptance by their peers - go out of their way to make sure that Taylor feels included. I have seen a high school student devote hours of her own free time to ensure that T is able to be a part of Girls on the Run like her friends by staying after school to hold one end of a rope while T runs laps around the track. I have tried to count, over the last few years, the special packages that have arrived in the mail addressed to T, the sender identified simply as 'Taylor's Secret Fan Club.' I have seen the time and love T's vision teacher and her husband have put into creating games with special modifications so that my sister doesn't have to feel lost just because she can't identify the colors on a Twister mat or see the targets on a conventional cornhole game. I have seen people who are meeting T for the first time recognize that she is blind and immediately begin to communicate in such a way that she can grasp what they are saying without the aid of visual cues.

I have also observed people watching my little sister with disdain as she fumbles through an unfamiliar obstacle course of a room or if she has trouble articulating her words. Those people may believe that because Taylor is blind, she is also oblivious to these acts of 'unkindness...' or perhaps they do not think this way at all and instead just do not have any regard for her feelings.

The email that included the story above ended with this: So many seemingly trivial interactions between two people, such as the one Taylor encountered at the mall today, present us with a choice: Do we pass along a little spark of love and humanity, or do we ignore those opportunities and leave the world a little bit colder in the process?

A wise man once said every society is judged by how it treats its least fortunate amongst them.

Wishing on Pennies

Everywhere, there are reminders of the passage of time: the sight of the setting sun at the end of a mild day on which the spring buds stretched their arms and reached for the sky, just six days after our area saw heavy snowfall; the excitement with which my little brother spoke of the major concentration he's just chosen on the eve of his senior year in college, though I am still often shocked to stand beside him and realize once again that he has grown taller than I; the high school classmate who walked past me at SouthPark Mall tonight - with several children in tow; Taylor's hair - which, as it grows, marks the time since it was shorn in an operating room far away from home, in the Pacific Northwest.

I had a few minutes alone while I waited for John in the mall earlier this evening, so I set my bags down and found a spot on the side of the fountain, pulling my knees up under my chin to watch the water rise and fall. The moment immediately brought back memories of a tradition long ago, one I shared with my dad when I was still an only child. Mom frequently had volunteer meetings on weeknights, so after eating grilled cheese sandwiches or Burger King for dinner, Dad and I would head to the Baskin Robbins in SouthPark to get ice cream cones (mint chocolate chip in a sugar cone for me) and throw pennies into the fountain until Dad's pockets were empty. This tradition has stuck with me long past the extinction of that particular Baskin Robbins; in fact, the on-again, off-again novel I started writing in college has a whole scene - a whole chapter, really - in which the book's main character and her mother (who has late-stage brain cancer) share a picnic by a similar fountain in a mall in Vermont.

Tonight, watching the fountain seemed to make time stand still. But when I lifted my eyes and invited the rest of my surroundings back into my consciousness, I was reminded of how much the mall of my childhood has changed. Gone are Sears and Hecht's and the old movie theater, supplanted by Nordstrom and Neiman Marcus and Tiffany & Co. Once the place where I could take my high school soccer teammates out for Sbarro's pizza after practice - and still in our shinguards - it now touts itself as "the Carolinas' premier shopping destination," and I suspect that our grass and sweat-stained shinguards would get dirty looks.

While SouthPark's been busy remaking itself, my little sister, who was born during the days of those beloved after-practice pizza outings, is growing up. Once happy with Gymboree, then The Children's Place, she now prefers to get her clothes from Justice and, during a short phase that seems to have ended, Abercrombie. My mom recently told me a story of how she had T and her girlfriends in the car one afternoon and offered to put on Radio Disney, only to get cries of protest and requests to play Kiss 95.1 (a decidedly more "grown-up" selection, though according to the station's website, Disney creation Taylor Swift did make the High 5 today). And though she simply giggles and grins, then turns her head when you ask for details, it seems that T and her friends have officially discovered boys this year. One night recently while Dad was out of town, John and I took Mom and T out to dinner at McAlister's. About halfway through the meal, T started talking about one of the boys in her class. Mom told her to show us what she'd been carrying around in her pocket, to which T responded by producing a carefully folded scrap of paper with a phone number and the words "Scott's Home Phone." She'd carried it around faithfully all day. That was almost a month ago, and in the time since, rarely have I seen her more animated than she was right then.

Though the changes in T have made for many happy memories like that night at McAlister's, they, too, signal the passage of time - a scary prospect for a family like ours. I would do anything to be able to press 'pause' and take the gift of additional time to ensure that T won't ever really have to stop growing up. But I can't do that. The sun has already set on this day. Tomorrow is another day and another opportunity to not only press 'pause' - which could only be a temporary solution after all - but to rewrite the entire script. I will be at MexiCafé tomorrow afternoon for Tip-off for Taylor as part of the latest attempt to do just that. And tomorrow evening, after everyone has gone home, one team has lost and the other has won, I will no doubt once again find myself willing a blank screen to be filled with words that give meaning - and belief - to our journey. And just for good measure, you'd better believe I tossed a penny into that fountain.