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.

A Spidery Web

Published: October 13, 2013 ~ 0

By Laura Edwards

Halloween front porch

Autumn hasn’t yet arrived to paint my hometown of Charlotte with its palette of brilliant crimson, gold and flame. But when I went for a solo run to train for the Thunder Road Half Marathon this afternoon, kids played in their Halloween costumes in cul-de-sacs, and the smoky sweetness of fall hung in the air. Pumpkins destined to become jack-o’-lanterns dotted every other front porch.

Just as I found my stride, my mind began to wander to memories of my grandmother. Born on Oct. 31 in 1940, Grandma Kathryn loved Halloween. I called her my Halloween witch, but if she was a witch, she was more like Glenda the Good Witch of the North than her green-hued sister from the West or her ill-fated, ruby slipper-wearing sister from the East. Born on Halloween, she never did a ghoulish thing in her life, instead living a life every bit worthy of the angel wings she received this past Christmas Day. She was far too young to go, and sometimes I think that maybe she was just too good for this world – that God had a greater purpose for her in a place we can’t even imagine. I haven’t always lived my life with honor, but she did, and when I go about my days now, I try to think about what my grandmother would have done before I act.

A love of Halloween is something my sister and my grandmother shared. Taylor’s a girly girl to the core, so a holiday based on a big game of dress-up suited her just fine. She didn’t even much care about eating the candy. But a couple of her costumes “required” eye makeup, blush and a touch of lip gloss. My sister once decorated herself and the cream-colored rug in our parents’ dressing area while sampling all of our mom’s cosmetic products. She couldn’t wait to wear makeup, even as a toddler, and Halloween gave her an excuse to wear lipstick way before she turned 16.

Then, of course, Batten disease crashed into our lives in 2006, the year Taylor turned 8. It didn’t so much crash into my sister’s life as slide into it, because while all of us absorbed our new, terrible knowledge about the progression and ultimate outcome of a disease we’d just met and figured out how to fight it, Taylor remained an oblivious third grader with some night vision loss and learning difficulties.

As the years passed, Taylor, too, got tangled in the spidery web that is Batten disease. In a cruel, ironic twist, what used to be one of her favorite nights of the year became a twist of the knife in all of our backs, including hers. As my sister’s vision and mobility worsened with time, navigating the neighborhood streets during trick-or-treating became more and more difficult. More painful than that, though, was watching as she stood in the open doorways of neighbors who didn’t know about her illness, and the neighbors waited expectedly for her to reach out and take candy from the outstretched bowl. When she stood there motionless – because she couldn’t see the bowl – John, my dad or I reached out in silence to take a few pieces of candy and drop them into Taylor’s trick-or-treat bag.

The only thing that stopped me from losing it in those moments was the sight of my sister on all of those front porches, blind and quickly losing her footing on a slippery slope above the deep, dark chasm of Batten disease, nevertheless standing stick-straight, her shoulders back and her head held high, wearing her Halloween costume like a champ.

High Tide

Published: June 26, 2013 ~ 0

By Laura Edwards

July 4 is next week, and unlike so many years of my childhood, we’ll spend the holiday at home in Charlotte. We used to celebrate Independence Day in the waterfront park of Southport, NC. Every year, we packed a huge picnic and spread our blankets in the grass and stuffed our bellies and stretched out on our backs to watch fireworks in every color of the rainbow light up the black sky over the Cape Fear River. Then, we piled in our car, exhausted but happy, and drove back to our beach house on Oak Island.

We haven’t seen the Southport fireworks in more than 15 years. In that time, my grandparents had to sell the beach house. Marriages ended. Kids went away to college, graduated and got jobs. Weddings happened. We learned that my little sister has Batten disease. My grandmother, an angel on earth and the matriarch of our family, went to heaven this past Christmas Day.

Five or six years after my grandparents built the beach house, the town started to have problems with erosion on the beach. My grandmother once told me that the problem stems from the fact that Oak Island meets the Atlantic Ocean at an odd angle. The cabana at Long Beach just up the street from our house washed away, so the town rebuilt it. If we wanted to take a walk on the beach, we had to time it just right, or else our walk could turn into a swim.

And yet, that sandy finger of land on the coast of North Carolina always held magic for us, even as the forces of nature exerted their will. We loved the new cabana just as much as the old one. We missed having a wide beach, great for long walks and sand dollar hunts and dreaming, but we just pulled our chairs right up to the dunes where the waves couldn’t get us, dug our feet into the thick sand and drank up the sun.

But life is not a beach, and Batten disease is not the ocean.

Will these waves of change keep pounding away until we have nothing left but our memories?

Full of Wonder

Published: March 31, 2013 ~ 0

By Laura Edwards

We spent many of the Easters of my childhood on Oak Island, a marshy finger of land sitting in the Atlantic Ocean just off the southern tip of North Carolina. My grandparents built a cedar shake house about a mile from the beach, on a scrubby patch of land on 48th Street – a long, residential road that ends at the Intracoastal Waterway. They never poured a driveway, so when my brother and I hopped out of the car after excursions to the beach or the town park, we often found ourselves ankle-deep in thick, dark gray sand teeming with fire ants.

In those days, Oak Island wasn’t a tourist destination and had a small, mostly older year-round population; it didn’t boast many restaurants, much less churches. So to celebrate the holiday, my Presbyterian family and I donned our Sunday best and drove to the Baptist church at the corner of our street and the island’s main road. After the service, we changed clothes at the beach house and went to the park, where Mom and Dad and our grandparents hid eggs we’d helped them hard-boil and dye in every color of the pastel rainbow in the airy kitchen with the vaulted ceiling the night before.

These are the memories that define Easter for me. I realize only now, as I share them here, that my sister Taylor isn’t in any of them. The last picture of the beach house that I remember is of my mom – eight months pregnant with Taylor – in the sun room where I sat at the white desk to draw pictures and curled up on the love seat to lose myself in a story after a sun-drenched day on the beach. My grandparents had to sell the house that year. It was an “adult” thing that I didn’t notice at the time or understand after it was over, even after I’d had time to dry my tears.

It’s been nearly 15 years since the beach house changed hands, but I still miss it. Even more than the house, I miss the way of life that’s disappeared in recent years. The house itself had its imperfections; at 1,500 square feet, it didn’t have enough bedrooms to hold our extended family, and it never stayed cool during the brutal summer months. The blue vinyl couches in the living room made you sweat even if icicles hung from the porch railings outside. We didn’t have a first row or even a third row view of the ocean; 48th Street runs perpendicular to the ocean road, and our neighbors across the street had an odd affection for plastic yard ornaments. And those fire ants…

But I’ll never forget our late-night egg-dying sessions or our private Easter egg hunts in the park; Fourth of July fireworks on the Cape Fear River in Southport, just across the bridge on the mainland; picnics in the wind-beaten cabana on the Oak Island beach; family baseball games at the town’s baseball diamond and the satisfaction of knowing that I had the coolest grandmother in the world as I watched her run the bases after hitting the ball into left field; walking to the end of 48th Street in the hours before dusk to find my favorite rock perched on the shore of the Intracoastal, scribble stories in a worn spiral notebook and shape my dreams.

The meaning of Christmas, the holiday that celebrates the birth of Christ, is easy for most people to understand. But a lot of people lose perspective when it comes to Easter.

Easter, the holiday that coincides with the arrival of spring, celebrates the resurrection of Christ. But in simpler, more universal terms, it celebrates new life.

We’ve lost so much since the days of the beach house. My grandmother, the matriarch of our family, passed away on Christmas Day 2012, but we lost much of her to a monstrous brain disease called Lewy body dementia long before that. Taylor, absent from all of those happy Oak Island memories, began with a life that seemed full of promise. She has lost more than all of us.

But in the wake of heartbreak, new hope still emerges. That is the miracle of life. And I understand now that THAT is the miracle of Easter – that it’s possible to BELIEVE even after a tragedy. God’s greatest miracle was the resurrection of Christ and the gift we received – eternal life.

Batten disease is senseless. It’s terrible. It’s tragic. It’s winning the battle for my sister’s life here on Earth. It’s stolen so much – priceless pieces of Taylor that we’ll never get back; pieces of ourselves, stripped away by the pain of being faced with losing someone you love to a monster like Batten disease; and most of our energy as we battle it day in and day out to give hope to future Taylors.

But we live in a world full of wonder.

Tomorrow is a new day.

I believe.

Unnatural Order

Published: January 25, 2013 ~ 6

By Laura Edwards

People die every day.

Three weeks ago, I read a eulogy inspired by a post on this blog at a memorial service for my grandmother, an angel in life who learned to fly on Christmas Day.

My grandmother’s cousin and close friend attended the service at the church that afternoon. Yesterday morning, her husband lost his battle with an aggressive brain tumor – the same kind of tumor that afflicts a main character in the novel I promised my grandmother I would finish one day.

When the azaleas bloomed in Charlotte last year, my husband and brother-in-law drove their father to New York to bury his mother – their last surviving grandparent.

My grandmother and I had a special relationship, and I will never stop missing her. But she was 41 years old when I came into this world. Though I never wanted her to get sick or pictured her that way until it actually happened, part of me always expected to outlive her.

Cancer is a horrible disease that can happen to anyone. But my grandmother’s cousin’s husband was not a young man.

My husband’s grandmother had five sons and many grandchildren. She lived for 92 long years on this earth.

My little sister, Taylor, is 14.

Five-year-old Taylor seemed perfect – beautiful, intelligent, spunky. Healthy. The world was hers to conquer.

Six-year-old Taylor had some unexpected trouble with first grade math.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, Batten disease burst into our world and shattered it into a thousand little pieces.

Fourteen-year-old Taylor lives in a world that is always dark. She can’t learn like other kids. She has seizures. She loves to sing, but she can no longer talk except for a few words. Soon, she will be in a wheelchair.

Batten disease steals the lives of children.

Disney World

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

People often ask us why we bother with Taylor’s Tale – the non-profit organization we founded not long after Taylor’s diagnosis. They Googled Batten disease, or they know something about it from their relationship with us, and they wonder why we don’t just enjoy the time we have with her.

I do catch myself fighting too hard sometimes – I’ll realize that I’ve spent more time on my laptop than with the people I love in a given week – and when that happens, I know it’s time to pull back.

But we HAVE to fight. We know we can’t win every battle. We look at the fourteen-year-old Taylor and know that we likely won’t even win our own. But we hate Batten disease so much for what it’s done to my sister that we simply can’t sit back and let it win EVERYTHING. We know there are other children and families fighting their own battles and that there will be more in the future for as long as we don’t have a treatment.

We know Batten disease won’t quit.

If Taylor had a choice, she wouldn’t quit.

Neither will we.

Sandcastles

Published: November 16, 2011 ~ 2

By Laura Edwards

I started writing stories when I was still wearing Velcro sneakers and pigtails and catching lightning bugs in jelly jars in the summer. In junior high, I often retreated to my tree house for hours with only a spiral notebook and a ballpoint pen. And though I’ve almost always written fiction, I’ve rarely succeeded in keeping real life out of my stories. People who’ve touched me have a way of sewing themselves right into the fabric of my life, such that if I were to try to remove them, the whole thing would come unraveled.

There’s my Granddaddy Parks, a Duke-educated World War II vet who wore Brooks Brothers to the table every morning. He liked two eggs sunny side up and his bacon cooked to a crisp. He spread real butter on his Pepperidge Farm toast and drank Dr. Brown’s black cherry sodas. Granddaddy Parks always smelled like medicine. He sat at his card table in the den with a glass of club soda to take his pills. In the afternoon, if he wasn’t playing golf, we read Winnie-the-Pooh books or watched Tom and Jerry cartoons on his laser disc player and ate green grapes or Edy’s cookies ‘n cream ice cream. When I was 8, he and my grandmother took me to New York City. We stayed in the Hilton, where the housekeeper tucked my stuffed dog from FAO Schwartz under the covers of my rollaway cot so that it’d be resting, waiting for me, when we returned. We ate at places like La Cote Basque, where a lady behind me ordered escargot and made me lose my appetite, and Mme. Romaine de Lyon, where the red and white-checkered tablecloths were made of fine linen, not plastic. While we waited for our food, Granddaddy taught me how to play games like blackjack and poker, games he got to play at the high rollers’ tables whenever he went to Las Vegas. During family beach vacations, he’d take all of us to Tony’s, a little Italian restaurant tucked away from the commotion of the Grand Strand. My dad never got to eat pizza or pasta at home growing up, because Granddaddy didn’t like the way it smelled. But Granddaddy knew I hated the Marker 350′s lobster and loved Tony’s cheese ravioli. So every summer, we went to Tony’s, and Granddaddy had the veal.

My Granddaddy Parks finally succumbed to a weak heart the winter I was 14. I was at a soccer tournament in Georgia and never had the chance to tell him goodbye.

There’s my Grandma Kathryn, who dropped out of school at 16 to have my mom and, for most of my life and long before I was born, ran her own business, Kut & Kurl by Kathryn, in the same building as my Papa Jerry’s grill and a pool hall that generated a good chunk of Papa’s customers. Grandma Kathryn wore Kmart jeans to cut hair and bought her church clothes at Hudson Belk. She liked crushed ice, not cubes, and stuck her coffee in the microwave right after she brewed it, because she liked it piping hot. She helped me find sand dollars on the Oak Island shore and write poetry while driving on I-40 in eastern North Carolina; together, we found beauty in a scrubby patch of wildflowers perched on a hill and a jet gliding across a backdrop of flat, gray sky. She rubbed my temples during my migraine attacks and, during my undergrad years, drove to Chapel Hill to take me to Mama Dip’s for Brunswick stew and strawberry shortcake when I’d had a bad day.

My Grandma Kathryn has a horrible brain disease that is like dementia, depression, and Parkinson’s disease all rolled into one. Every time I see her, it feels like the continuation of one long goodbye that may never have a proper conclusion.

There’s my sister, Taylor, who came into my life at a time when I thought she would just get in the way but found her way into my heart before she ever uttered her first words. Taylor padded around the house dragging my stuffed UNC mascot by one fuzzy black hoof and held my pinky finger when she slept in my arms. From the confines of a stroller, she helped me take over the below-ground level of a mall in San Francisco while our parents went to a company dinner. She gave concerts to imaginary thousands – she the lead singer, her big sister the keyboard player, my parents’ hearth our stage. She danced circles around my desk chair, a welcome distraction while I did my math homework, and chanted “Rar-Rar!” at the top of her lungs from the sidelines during my soccer games. She helped me build sandcastles by the sea and weave stories of the princes and princesses living inside. She taught me that even girly girls aren’t above jumping into a pile of leaves and convinced me to give the color pink a second chance. She helped me understand that growing up healthy is a privilege that cannot always be earned.

My sister, too, has a tragic brain disease. It already stole her vision. Now it is stealing her speech and her ability to walk. Before it is done with her, it will steal her life. She is 14.

I want to hold onto all that’s ever happened to me, everything I’ve done, and everyone I’ve ever known. I want to see every face, hear every voice, and feel every moment we’ve shared. It’d be easier to let it all wash away, gone forever, like sandcastles at the changing of the tide. But if that ever happened, a large part of me would be gone forever, too.

Grace

Published: August 15, 2011 ~ 2

By Laura Edwards

On October 4, 1999, I arrived home from school to find an envelope addressed to me in the mailbox. My grandmother’s familiar cursive hand graced the outside of the envelope and filled the card inside, spilling onto a separate piece of stationary. Also tucked in the envelope was a newspaper clipping from the Raleigh News & Observer. The photo depicted an NC State University vet student comforting a dog separated from its owners by Hurricane Floyd, a category two storm when it flooded eastern North Carolina that September.

Because the photo did not include a caption, Grandma Kathryn explained its significance in her note. In doing so, she shared one of her many stories with me. She was a storyteller in the purest sense of the word; she knew how to give her words life beyond the page on which they were written or the air in which they were spoken, and in doing so, she always imparted some piece of great wisdom.

“The way people have responded to this situation on the coast has restored my faith in humanity,” she wrote near the end of the story. “I was beginning to think no one cared about their neighbors, but that is simply not true. Most of us are basically good, just misguided. Tragedy sometimes brings out the best in people.”

Grandma Kathryn and me in June 2006, just three weeks before
my wedding and seven weeks before Taylor’s diagnosis.

My grandmother said her faith in humanity had faltered, but I never saw that – not in 1999, and certainly not now. She devoted her entire life to those she loved or those who needed her, and she never expected anything in return. She became a mother at sixteen, and her three children – and the grandchildren that followed later – were her life. She always dreamed of becoming a writer but never had the chance to go to college or even finish high school, enrolling in beauty school instead. Decades later, she helped me discover a love for writing and, for many years, helped me find my own words. She is present in the happiest memories from my childhood. I remember lazy summer days on Oak Island, days we took long walks on the beach and looked for shells or sat in a swing on the waterfront in Southport, eating hushpuppies with honey butter and filling stacks of spiral notebooks with poems and short stories; nights we hung a sheet over the bare windows of her house in Raleigh and ate Shake ‘N Bake chicken and Kraft macaroni and cheese while we plowed through rented movies stacked two feet high.

Life was never easy for Grandma Kathryn, but it was, for the most part, happy. And she did everything in her power to ensure that her children and children’s children had happiness.

I will never forget my freshman year of college. I began and ended my college career at UNC-Chapel Hill, but I spent the spring semester of my first year at NC State. I became so deeply depressed in the fall that I wasn’t sure I’d be able to make it till Christmas. I often wore sunglasses to class, even on the cloudiest of days, to hide my tears. Some nights were particularly bad, and on those nights, my grandparents climbed in the car and drove from Wake Forest, just north of Raleigh, the forty or so miles to my dorm to pick me up and take me back to their house, where I’d complete my homework assignments on the family room couch while my grandmother made my favorite foods for dinner. After dinner, she’d sometimes join me on the couch and rub my head till I fell asleep, as she did when I was a little girl and suffered from terrible migraines. The next day, if needed, she’d adjust her schedule at the beauty shop so that she could drive me back to Chapel Hill in time for school; I never missed a class. In December, when UNC posted final grades, I made the dean’s list. Meanwhile, NC State accepted my transfer application, so in January, I moved in with my grandparents in Wake Forest and began attending classes in Raleigh.

One weekend in February, I returned home to Charlotte to visit my family and John. On Sunday, just a few hours before I had to make the drive back to Raleigh for class the next day, I went for a run on the outdoor track at the YMCA. The sky was a clear, brilliant blue, and the air felt so cold that it hurt my lungs. As I sprinted the length of the last straightaway, my lungs burning, I suddenly realized that I wanted to go back to Chapel Hill for my sophomore year, mostly because I didn’t want to go through the rest of my life believing that I had failed at something.

I re-enrolled at UNC that fall, just as I had decided on that sunny, cold day in February. I had three amazing years there and never once regretted my decision to return. However, I also never forgot the four months I lived with my grandparents and attended NC State. Though forged by great pain, they also brought happiness.

More than seven years after I lived with my grandparents, my grandmother fell and broke her hip. She was admitted to a hospital near her home on Oct. 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until Oct. 31 – her 68th birthday. During that month, her world, and ours, came crashing down. Though she had to have surgery to repair the broken hip, the injury itself didn’t necessitate a protracted hospital stay. It was the frightening symptoms that emerged during her time there, eventually diagnosed as Lewy body dementia, that kept her there for so long.

Now, when we look back on the months leading up to the diagnosis, we recognize the signs. At the time, we attributed Grandma Kathryn’s occasional odd comments and vacant facial expressions to depression stemming from the loss of her own mother and Taylor’s Batten disease diagnosis. As I said, my grandmother’s children and grandchildren are everything to her – and the thought of Taylor dying young was literally killing my grandmother. To this day, a large part of me believes that her own disease intensified and perhaps even arrived years prematurely due to her heartbreak over Taylor’s illness.

Lewy body dementia, like Batten disease, is ugly. It strips people of their faculties, but also their personalities. Lewy body has spared very little of my grandmother just three years removed from the diagnosis. Every time I see her or talk to her, I struggle to avoid crying. My grandmother, who taught me to love books, will never read again. My grandmother, whose cards I eagerly awaited to receive in the mail, will never write again.

Because the grandmother I knew is no longer with us, I cherish pieces of her – like the letter she sent me in the fall of 1999 – more than I ever imagined I would, just as I never imagined the last days of her beautiful life would be spent this way. She taught me so much over the years. She taught me not only how to write, but also how to love; she taught me to figure out what I want in life and to never, ever give up in my efforts to obtain it. She taught me about the things that are important, and the things that are not.

Now, facing the prospect of losing my grandmother and my little sister, I can only hope that I inherited their ability to see the best in every situation, their great love for others and their indomitable strength in the face of adversity. And, if I should ever lose my way, I will need only to read this, the note tucked into that card I received in the mail so long ago:

Dear Laura,

I want to tell you again how much I like and admire who you are. You are realizing what is important. Not soccer, joyous though it is for a short time, but relationships, your values that keep you head and shoulders above the crowd. The people who love you, unconditionally, no questions asked. Friends you will remember years from now. Some little moment that seemed unimportant at the time, but the memory lingers on.

Enjoy each day. You can only live this part of your life one time.

You said that adversity makes you strong. That is true. Pain and sorrow make you strong also, but the thing that gives you the most strength, the staying power to stand alone, is love.

Now it is the love of family and a special friend or two. One day soon it will be someone who loves you for the person you are, who knows all your secrets, and loves you all the more for them.

You are preparing for that time now and he will be a lucky man because you have a strong character. You are kind, intelligent, determined. You don’t quit.

When I think of you, I think of the term “Grace under pressure.”

You are the person I always hoped you would be and I love you very much.

When you go to college, you will be pushed and pulled to do things that you know in your heart are wrong. That is when this inner strength and character you have so painfully acquired will be so important. That is “class.” Not money, not prestige, not social position.

Just simply, who you are.

Love,

Grandmama

The Raindrops Danced

Published: May 17, 2011 ~ 0

By Laura Edwards

Tonight, throughout most of the 30 minutes I spent chained to a recumbent bike at the gym, my eyes darted from the Kindle in my lap to the darkening sky through the windows – layers upon layers of deep blueberry blue and blackberry purple, like a frosted layer cake left out in the sun on a humid day. As I hobbled out the front door some time later, the orthopedic boot that has been my fashion statement for the past month holding my busted Achilles together like Scotch tape, the front desk attendant told me to stay dry.

As luck would have it, the first warm, fat drops of rain fell from that layer cake sky just as I walked out into the balmy night.

Normally, I would have sprinted the 50 feet to my car. I don’t like to get wet. My husband routinely teases me about my love for the outdoors and, conversely, my distaste for rain unless I’m safely out of it. Just two days ago, he watched with a smile from the door of the chapel where our friends were about to be married as I limped unevenly across the parking lot, my left foot in the boot and my right foot in a three-inch heel, a slippery Pashmina wrap slung over my shoulders and the world’s largest golf umbrella clasped in both hands.

As I pulled out of the gym parking lot, I received an unexpected visit from a decade-old memory of an afternoon at my grandparents’ house in Wake Forest. In the pictures that played on the projector screen in my mind, Grandma Kathryn chases an overalled-toddler version of Taylor around the front yard under a gray sky. Taylor manages to avoid our grandmother’s outstretched arms, only to be scooped up by John when she rounds the corner and runs right through his hiding place. He turns her upside down and tickles her, then sets her on her feet. And the game begins all over again.

A soft breeze rolls over the tops of the trees – a warning for rain. As the first drops cascade out of the sky and onto our waiting faces, I run for cover. Taylor runs to the porch and tugs at the handle of an umbrella three times her size. John takes the umbrella from her, opens it and wraps her tiny fingers around the shaft. Her cherub face breaks into a grin, and she takes off down the winding path to our grandmother’s garden, singing in the rain.

I smiled as I remembered this very real moment – a testament to my little sister’s ability to find beauty in every drop of rain. The image of Taylor skipping down that garden path reminded me of the words of Cindy Smith, a courageous mother who lost her son to the same disease that threatens to take my little sister away from me forever.

“Life is not waiting for the storm to pass. It’s learning to dance in the rain.”

As the spring rain poured from the sky, I rolled down my window. The raindrops danced on my outstretched arm as a smile danced across my face and love filled my heart.