2013: The Memories

Published: December 29, 2013 ~ 2

By Laura Edwards

As the sun sets on 2013, our seventh full year fighting the war against Batten disease, I know in my heart that in many ways, the story has just begun.

On Jan. 4, we remembered my Grandma Kathryn, an angel in life who earned her wings on Christmas Day 2012. My grandmother, who loved her grandchildren more than she loved her own life, urged us to fight the demon from the moment we got Taylor’s diagnosis in the summer of 2006. She had no way of knowing that she, too, had a tragic neurodegenerative disease lurking inside of her. There was nothing she wanted more than an answer for the disease that dared to steal her granddaughter’s life. I fight for Taylor, but I fight for Grandma Kathryn, too.

On Feb. 28, World Rare Disease Day, Taylor’s Tale announced that we had joined an international coalition to fund gene therapy research at the University of North Carolina. Dr. Steve Gray and his mentor, Dr. Jude Samulski, are not the only talented scientists working on Batten disease. But I believe in them because of 1) what I’ve learned about the science of Batten disease in seven-plus years, 2) what I’ve been told by their respected peers and 3) something in my heart that I can’t describe. And I believe in my heart that if we can continue to fund this project, we’ll have a clinical trial for kids like Taylor in a few short years.

For the fifth consecutive year, music students and teachers held a playathon for Taylor’s Tale in Raleigh, N.C. Their efforts raised thousands of dollars and a great deal of awareness for our fight against Batten disease. I love these kids and their teachers. This event is special.

In April, Taylor’s former classmates at The Fletcher School held their second cardio craze fundraiser with local celebrity Andre Hairston. They turned a school gym into a sea of love and hope.

On June 1, I announced my plan to run the Thunder Road Half Marathon blindfolded to honor Taylor and support the fight against rare diseases.

Eleven days later, Mom spoke at the National Institutes of Health (NIH) on behalf of Hannah’s Hope Fund. Mom and Lori Sames, founder of Hannah’s Hope, delivered amazing speeches, and Hannah’s Hope gained approval from the Recombinant DNA Advisory Committee (RAC) in its quest to begin a human clinical trial for another childhood neurodegenerative disease called GAN.

This year, Taylor’s Tale also welcomed new board members. Our first- and second-year board members have made an incredible impact on our fight against rare diseases in 2013.

During the five and a half months that I trained to run 13.1 miles blindfolded, I learned more about my sister’s dark world, and myself, than I could have ever imagined. And race day, Nov. 16, is an experience I’ll never forget. No words of mine can describe what happened at the Thunder Road Half Marathon for the fight against rare diseases.

In many ways, 2013 has been the most successful year for Taylor’s Tale since my mom and I founded it with a small but determined group of volunteers in a Charlotte living room seven years ago. We connected with members of Congress and developed contacts with other key individuals. We partnered with a leading patient advocacy organization called the Global Genes Project and were adopted by a wonderful, local philanthropic organization called Playing for Others. We’ve raised more money in other years, but we’ve never extended our reach in such a big way, or had this much excitement surrounding a funded project, or harnessed the power of a great story the way we did with the run…until now.

But while 2013 has been an incredible year for Taylor’s Tale, it has been a difficult year for Taylor in every way. When we founded Taylor’s Tale, my sister was an animated, spunky, running, playing, talking, singing 8-year-old with most of her vision. But Batten disease is a demon. Taylor has a beautiful singing voice, but she can no longer talk. Her two 5K finishes inspired my blindfolded half marathon, but she can no longer walk without assistance, and her wheelchair is on order. My sister taught herself to read before kindergarten and learned Braille after she went blind, but she can’t read or write anymore. My sister can’t use a fork and spoon, because Batten disease stole her fine motor coordination. I can see the sadness in her eyes, even though her eyes can’t see me.

Batten disease has won every battle.

But it will NOT win this war.

Crunch Time

Published: November 2, 2013 ~ 1

By Laura Edwards

Two short weeks from now, the finish line of the Thunder Road Half Marathon will be behind me. After five months of training and countless lessons about my sister’s dark world, it’s hard to believe that it’s almost here – and that once we cross the first timing mat, the journey of a lifetime will be complete in about two hours’ time.

We’ve gotten some great media coverage and have more on the way. If you live in N.C., pick up a copy of the November issue of Endurance Magazine. Taylor’s amazing story of courage on the race course made the cover! Click here for a note from the editor about the article. The South Charlotte Weekly ran a nice article a few weeks ago. The Charlotte Observer will print a story about our upcoming race tomorrow. We have more TV coverage on the way as well.

Wednesday night just before 10:30, Andrew and I embarked on a 4.11-mile run on the twisty streets of our neighborhood. Encumbered by the cul-de-sacs, speed bumps and rumble strips that have accompanied so many of our training runs, we checked in at a 9:43/mile pace. When my friend and guide dropped me off at my mailbox at the end of the run, I didn’t have a scratch on me and had two healthy ankles – both good signs. I haven’t fallen since my crash landing in mid-August – still my only accident throughout five months of training for Thunder Road. But as I read and reread the stats for our run, I knew I wanted to get FASTER.

10-mile run

This morning, Andrew and I headed to an office park area south of our neighborhood – the site of my longest blindfolded run to date – for just our second daytime run. I strapped on my new Camelbak water bladder pack; crowded water stations aren’t the place for a blindfolded runner, and the pack is a great solution for my hydration needs and all of the other random things I need for a long run (license, health insurance card, Shot BLOKS, etc.).

I wanted to run 10 miles today. The last time we went to the office park, we ran up and down one road that has light traffic on Saturday mornings, hills to train for Thunder Road (not known for being flat) and a chance to practice our turns. Andrew asked me if I thought I’d get bored running the same stretch for 10 miles, to which I responded, “It makes no difference to me!” After all, when you’re blind, the scenery’s all the same.

Running in a dark world as the fog lifted to reveal a bright, sunny day in Charlotte, I could have let my imagination take me wherever I wanted to go. But I stayed grounded, both for safety and to remember every moment of what may have been the last time I put on a blindfold before race day. I felt the sensation of cars as they passed, even though they moved to the center lane to give us room (we didn’t have any encounters like the first time we ran on that road, when a driver in a Porsche flew by and scared me so badly that I jumped into Andrew and almost knocked him over). I felt the “corrugated” texture of the bridge of the interstate beneath us and asked my guide to help me avoid the painted white lines on the road, because they felt slick.

Andrew 10-mile run

I also heard the voices of other walkers and runners. Andrew narrated their reactions to the crazy blindfolded girl wearing a purple backpack, most of which began as shock, then changed to slow recognition and finally a big grin and, sometimes, a thumbs up or a wave. We stopped to talk to two of the runners, one of whom teaches at The Fletcher School, the school Taylor attended for six years. I didn’t realize until later that without even thinking about it, I removed my blindfold long enough to say hello – which Taylor couldn’t have done. It felt like the polite thing to do, but when I pull that blindfold over my eyes, I really do want to blind myself – to experience my sister’s world and to remove all of the privileges that come with being sighted. I don’t intend to take off the blindfold at any point during the race. I’ve solved the water station issue, but more recently, I’ve thought about awkward things like restroom breaks, and whether or not I can skip them for 13.1 miles. I can hold it for 10. I think I’ll just force myself to hold it for 13.1.

Andrew and I reached our goal, after all. We logged 10 miles, my longest blindfolded run by far. We hit about an 8:45/mile pace, good for 1:27:42 even with a couple of stops for SHOT Bloks and the quick visit with Andrew’s friend from Fletcher. My PR for ANY 10-mile run is 1:20, set at the Tar Heel 10 Miler this April. So I feel great about what we accomplished this morning!

I’ll share a secret with you, too: for a brief period of time during today’s run, Andrew cut me loose. I ran down the center of the quiet street, the bungee cord that is my lifeline coiled up in my left hand, my guide just a few steps away. I picked up my speed, and I felt free as a bird. During those fleeting moments, I felt my sister’s presence. And I didn’t fall.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.

Running in the Dark

Published: June 7, 2013 ~ 1

By Laura Edwards

Two nights ago, I ate an early dinner and waited for several hours to give my grilled cheese, my apple and my neighbors a chance to wind down. Then, I donned a reflective hat, strapped on my Garmin watch and laced up my running shoes. With a bungee cord in hand, I jogged .7 miles under inky, starless skies to the home of my friend, Andrew Swistak, a fellow runner who works at The Fletcher School, where my sister, Taylor, spent six wonderful years.

Just after sunrise on the morning of Nov. 16, I will pull on a blindfold after I lace up my shoes, and Andrew will guide me through the 13.1-mile Thunder Road Half Marathon course on the streets of my hometown of Charlotte. I will attempt to run the entire race without the gift of sight to honor the five-year anniversary of Taylor’s first 5K race, which she ran in conjunction with the 2008 edition of Thunder Road with the help of an older student from Fletcher.

But on this night – National Running Day and my first training run with Andrew – I had no blindfold and, with corrective lenses, perfect vision. Our goal for the evening was to get accustomed to running with the bungee cord.

Early on in our run, though, Andrew took me to the track at the middle school by our neighborhood so we could get used to making turns. And in that protected environment, he asked me if I wanted to give blindness a try, at least for a minute. So I closed my eyes.

Right away, I lost my spatial awareness. The bottom dropped out from under me. My legs turned to Jell-O, and my body felt as though it was not my own. I couldn’t run in a straight line.

But soon, with Andrew’s help, I found my bearings in my dark world. I think we ran five laps around the track. Andrew said that for the most part, I stayed in my lane, even on the turns. I learned to understand the meaning of his tugs on the bungee cord. After a while, we left the track and returned to the neighborhood. I figured out how to make 90-degree turns and 180-degree turns and shift to the side for an oncoming car. At one point, Andrew asked me if my eyes were really closed. And they were.

I thought I’d mastered running blind – albeit much more slowly than I run sighted – until I mistimed a curb jump and twisted my ankle. And in that moment, I remembered that NOTHING about blindness is easy, just as nothing about this race will be easy.

But nothing about Batten disease or rare diseases is easy, and nothing about our fight to save people like Taylor is easy. And a twisted ankle on my first attempt isn’t enough to stop me. An ACE bandage, an ice pack and a couple of days’ rest work wonders for such injuries. And besides, going to work with an ice pack taped to my ankle gave me a natural opening to tell plenty of people about my blindfolded run and the reason behind it, so we spread Taylor’s Tale this week.

And I have a great guide in Andrew Swistak, not to mention a healthy dose of inspiration. There will be no twisted ankles on Nov. 16. We’ll be ready.

I am running the Thunder Road Half Marathon to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Run to the Light

Published: June 1, 2013 ~ 4

By Laura Edwards

My little sister, Taylor, has Batten disease. But that didn’t stop her from signing up for Girls on the Run in the fall of 2008, at the start of her fifth grade year at The Fletcher School. The degenerative disease had already stolen her vision and made it difficult for her to learn new things, but more than anything, Taylor wanted to be a normal kid, and she dared Batten disease to get in her way.

In the afternoons after school, Taylor and her girlfriends met at the track for practice. They developed good fitness habits and learned about teamwork, and they learned to believe in themselves. An upper school student named Mary-Kate stayed after school to practice with the younger girls. When it came time to walk or run around the track, she and Taylor each took one end of a modified jump rope – my sister’s lifeline to a normal experience she desperately craved.

At the last practice of the semester, the girls ran a “practice” 5K around the school track. All of the other girls finished their laps before Taylor and Mary-Kate. Then, as the pair rounded the corner and began their final lap, something magical happened. One by one, everyone on the sideline joined my sister and her sighted guide on the track. Soon, the whole team, plus the coaches and others there to watch the practice, fell into stride with my sister and ran her final lap with her. Girls on the Run Founder Molly Barker happened to be on campus that day to watch practice and meet the girls; she captured this incredible moment in a story for North Carolina’s Endurance Magazine that Gap Inc. also featured in a national campaign last year.

Mom's photos 232

The team’s first REAL race took place on a chilly morning that December at the Jingle Jog 5K, run on the streets of uptown Charlotte in conjunction with the Thunder Road Marathon and Half Marathon. Mary-Kate told us that Taylor stumbled and fell several times on the course, but that after each fall, she pulled herself up, said she could keep running, and did just that. The tethered pair finished the race in just under an hour. They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.

Taylor and Laura after the Jingle Jog 5K in 2008

Taylor was all smiles after the Jingle Jog 5K in 2008.

I’ve run thousands of miles for Taylor since that day at the finish line of the Jingle Jog 5K. I run the Thunder Road Half Marathon every year and run various other races in Charlotte and elsewhere, from 5Ks to 10 milers, and I’ve shaved more than 30 minutes off my half marathon time since my first go at the 13.1 distance in 2009. But I’ve never come close to achieving the kind of feat my sister accomplished, because I’ve run every race with the benefit of my vision. That’s why, to honor the five-year anniversary of her incredible achievement, I plan to run the 2013 Thunder Road Half Marathon blindfolded.

I’ll be tethered to my good friend, Andrew Swistak. Andrew is an avid runner and is also on staff at The Fletcher School, where my sister spent six wonderful years and met many guardian angels. I’m grateful to have Andrew’s support as well as the support of the folks at Run For Your Life, who put on the Thunder Road Marathon and Half Marathon.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

I’m in half marathon shape now, but I’m not ready to run 13.1 miles – or even 13.1 feet – without my eyes. Have you ever closed your eyes and tried to move around? It’s not easy to run in the dark. I’m in awe of Taylor’s spatial awareness and courage. Andrew and I have some practicing to do between now and Nov. 16, but we’ll be ready.

I’m doing this mainly to raise awareness of Batten disease, but donations to Taylor’s Tale are always greatly appreciated. Currently, Taylor’s Tale and five partners are supporting gene therapy for infantile and late infantile Batten disease at the University of North Carolina Gene Therapy Center. This promising work could lead to treatments for not only rare diseases such as Batten disease, but also more common diseases like Parkinson’s disease, Alzheimer’s disease and ALS (Lou Gehrig’s disease). If all goes well, this work could be ready to go to clinical trial at UNC in just a few years.

Please share this story to help us build awareness! We’re making incredible progress in the fight to save people like Taylor, but we need the support of friends like you to continue to make a difference.

I have a little bit of my sister in me; I believe, and I dare Batten disease to get in my way!

To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

NEW: Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

Twelve Reasons to Believe: Second Family

Published: December 21, 2012 ~ 0

By Laura Edwards

Taylor with Susie Culp, Fletcher’s admissions director, on her last day as a sixth grader

The following is eighth in a 12-post series.

Last spring, my parents made the difficult decision to pull Taylor out of The Fletcher School, a private school for students with specific learning disabilities and/or attention deficit disorders, and put her in a special program at one of the local public high schools for her freshman year of high school.

Taylor doesn’t walk the halls at Fletcher anymore. But in her six years there, the school’s students, teachers and staff became her second family. Batten disease won’t allow Taylor a chance at a “normal” life, but her Fletcher family gave it their best shot, and on a lot of days, they got darn close.

I joined Fletcher’s board of trustees this fall, and a few nights ago, we had our holiday party. Many people at the school know and love my sister, and several went out of their way to ask me about her and wish her a Merry Christmas. I even got a couple of hugs to pass along (I love delivering hugs to my little sister; I stopped by her house tonight to give her a sparkly pink and white princess cupcake from Gigi’s Cupcakes and no less than seven hugs from the team at her old school).

Taylor no longer walks the halls at Fletcher, but she will forever be in the hearts of the people who make the school go – the people who build bright futures for the kids who used to make a place for my sister at their lunch table in the cafeteria and include her in their skits for the annual talent show. Even on the darkest of days, Taylor’s second family reminds me that she is loved by many.

They give me reason to believe.

Angels are Everywhere

Published: February 16, 2012 ~ 0

By Laura Edwards

In the spring of 2006, The Fletcher School, a small, private institution in Charlotte, accepted Taylor into their incoming third grade class. It wasn’t until that summer – just weeks before her first day at Fletcher – that a geneticist delivered the crushing diagnosis of infantile Batten disease, and our lives changed forever.

Some people find it easier to block out life’s most painful moments, but I haven’t forgotten anything about the days and weeks following Taylor’s diagnosis. I remember when Mom called the school’s leaders and tried to put into words the tragedy that had befallen our family. She told them she would understand if they no longer had a place for my sister.

But The Fletcher School did more than just accept my younger sister into their student body. They adopted her. It has been nearly six years since the administration assured my mother they would figure things out together. Today, my “little” sister is almost as tall as I am and will be 14 in August. When she first walked through the doors of The Fletcher School as a third grader, she still had almost all of her vision; on the surface, infantile Batten disease had very little of her.

Even as Batten disease continued to tighten its grip on my sister during the past several years, I never worried that the kids at school would be cruel to her. I simply worried that they would be human – that they would get caught up in their own lives, and that Taylor, blind and struggling with her speech, would simply miss the wave.

It would be disingenuous of me to claim that Taylor has had the benefit of every moment – of every memory – that her friends have experienced. I refuse to sugar-coat Batten disease; nothing about it is easy; there is no silver lining. But her friends have made every effort to illuminate Taylor’s dark world with small acts of great love. I think many adults would do well to take a lesson from the students at Fletcher who have found a way to put a smile on my sister’s face when she has every right to be angry at the world.

A few weeks ago, my parents told me the kids and teachers at Fletcher were working on a “cardio craze” fundraiser for Taylor’s Tale. They planned to ask Andre Hairston, a local celebrity and fitness instructor who had supported our organization in the past, to lead the session.

We didn’t hear much more after that. This morning, when Dad dropped Taylor off at school, he guessed that half the student body wore purple or pink – Taylor’s favorite colors. And when I entered the gym for the event this afternoon, I walked into a sea of glitter, sparkle and love.

I can only imagine the number of inspiring stories that will continue to make their way to me in the coming days and weeks, but here are a few I heard today:

Students had to pay $5 to attend the fundraiser. But one student donated the contents of his allowance jar – over $150.

One student paid the minimum $5 to attend. The day before the fundraiser, she told one of the teachers she wanted her money back. When asked why, she produced a $20 bill. She explained that she received the money for her 16th birthday; when she realized that many children with Batten disease never get to celebrate their 16th birthday, she knew she wanted to give her birthday money to Taylor’s Tale.

Taylor’s girlfriends danced with her throughout the entire event; when the crowd turned to face a different wall, they always made sure she faced the right way. When Andre invited the girls onto the stage toward the end of the program, they helped her navigate the stairs so she wouldn’t get left behind.

The kids at Fletcher put on an event that took place in a school gym, lasted a mere 45 minutes and yet raised more than $3,500 in support of our fight against Batten disease. That is a lot of money. But I hope they know that more than the money they raised, the heart they put into the event – and the kindness they show toward my sister each and every day – are what define them. Today, they gave me a much-needed reminder that even in the face of great tragedy, angels are everywhere.

Special thanks to the Fletcher School’s students, teachers and administrators and Andre Hairston for staging this incredible event for Taylor’s Tale.

The Art of Extraordinary

Published: January 12, 2012 ~ 0

By Laura Edwards

This morning, Mom attended the Beta Club induction ceremony at Taylor’s school as a guest speaker. They gave her 10 minutes to talk to a group of accomplished high school students about topics such as making the most out of a difficult situation, believing in and working for a cause and helping others through volunteer work.

My mother is a great storyteller. Many of the kids at the small, private K-12 school my sister attends already know Taylor and are familiar with Taylor’s Tale, the non-profit organization founded in her honor. So, Mom told those kids a story many of them knew, just not in a way they’d heard before. She told it in a way that only a mother who has faced a demon like Batten disease – and then dared it to keep her down on the ground – could.

Mom told me that after she spoke, many of the kids came up to her. The boys shook her hand; the girls hugged her.

Here, I’d like to share just a small piece of the beautiful message she imparted to those kids earlier today. They’re great words to live by – no matter who you are or what you’re facing! And thanks, as always, to the world’s greatest mom for her infinite wisdom and for lending a little battery juice to me from time to time!

“As for me—I’m not sitting in that chair anymore. Hope creates energy and energy finds answers. It is amazing what can be achieved when you choose to begin each day with your inner GPS powered-up and EXTRAORDINARY as your destination. Never forget, though, on those days when your battery is running low, to borrow a little power from your family, friends, teachers, and others. They will likely be more than happy to share, and when a team practices the Art of EXTRAORDINARY, well…the sky’s the limit!

Best wishes to each of you as you go after your own EXTRAORDINARY today and always!” –Sharon King

What I Knew as a High School Senior

Published: September 14, 2011 ~ 0

By Laura Edwards

Taylor is in the eighth grade this year. I’ve had a couple of weeks to get used to the idea that she’s an eighth-grader, but I still can’t fathom the fact that she’s less than a year away from her first day of high school.

Taylor’s friends are awesome, and they’ve done wonderful, amazing things for her even in the face of all that has changed about her since most of them met her at the beginning of the third grade at their small private school. Just last month, an angel named Charlotte orchestrated a surprise birthday party for my little sister. The girls invite her to their tennis matches and basketball games. They all continue to make a place for her at their lunch table, even though she can’t always participate in their gab-fests. And during the seventh grade dance in the spring, three boys – and all of the girls – danced with her, relegating my husband and me (the chaperones) to wallflower status.

Great acts of kindness bring a smile to my little sister’s face, but they don’t make her better. She still has Batten disease, and the reality is that every new memory is made on borrowed time. I want to see Taylor go to her high school prom. I want to see her graduate. I want to see her live out all of her hopes and dreams. She deserves nothing less.

Thinking too far ahead gets me into trouble, though, so for now, I’m forced to settle for good todays and tomorrows.

I’m (slowly) beginning the hateful process of cleaning my home office. Tonight, I found a column I wrote for the high school newspaper near the end of my senior year, in the spring of 2000. After three years on the staff, I got the privilege of partaking in the “senior goodbye” tradition – an open-ended letter to my fellow students.

Here I am, a high school senior anxiously awaiting graduation. It seems as if only yesterday I was a nervous, introverted freshman setting foot on campus for the very first time. A lot has changed since then. A glance at the past reveals a wealth of precious memories; senior year, in particular, becomes a whirlwind of college applications, the infamous spring break week and who took whom to prom. Final soccer games. Last dances. First loves. Last laughs. Shared tears. The precious moments are what make me who I am.

What lies beyond June 1 is uncharted territory. We will all set out together, and alone, to find the rest of our lives. Some of us will keep in touch. Others will drift apart. This is the way life is. Every day life changes. But our memories will remain. People are kind of like stained glass windows. We are made up of so many different colored pieces of glass; yet if one piece was removed, the beauty of the window would be forever lost. These pieces are our memories. I wouldn’t trade them for the world.

So in three weeks I will be a high school graduate. Here come the mixed emotions everyone before me swore I would have. I’m ready to get out of high school like everyone else. I’m anxious for the freedom of summer and the vast college campus awaiting me. At the same time all I want to do is give everyone a hug. Gone are all the grudges I have ever held, all the conflicts I have ever had. None of it matters anymore. We are beginning a new chapter now. Life is short, but sweet. Enjoy it while you still can. As for the thank yous, I haven’t compiled my list yet. Everyone I have ever known has in some way served to make my life better. To my friends, enemies, teachers, coaches, teammates, family and fellow graduates, I will remember you long after the things I learned in class have been forgotten. You have all touched my life in a special way. Regardless of what the future holds for me, you will be a part of me forever.

Taylor was just 20 months old when I wrote that column. At the time, she loved to dance around the house with my stuffed UNC ram, which played the fight song with a squeeze of its hoof. She called me “Rar Rar.” She had Batten disease, but nobody knew it.

I didn’t know much as a high school senior, but looking back now, I managed to get a couple of things right:

Moments – and relationships – define us.
Tomorrow is uncharted territory.
Life is short – but very, very sweet.

To many, many more tomorrows for my sister.

Love,

Rar Rar