The Bell Still Rings for Me

Published: December 22, 2017 ~ 0

By Sharon King

Sweet Taylor…always a lover of fairy tales, princesses and Christmas.

While her mom wasn’t prepared for holiday decorations at the mall the day after Halloween, Taylor delighted in the magic of it all. It was NEVER too early for her.

When Batten disease claimed her vision, I worried that Taylor would be robbed of her Christmas joy, so I simmered oranges and spices on the stove to help her smell the Christmas she couldn’t see. Even though The Nutcracker was a family tradition, I struggled with buying tickets each year as the disease became more and more apparent. It’s a ballet…you have to be able to see it, right?

Looking back, I realize that Taylor never allowed Batten disease to steal the beauty or the meaning of the season. It wasn’t a problem for her, as it was for her mother. I think she held the lights and sparkle in her mind’s eye. As for The Nutcracker…even today, she wears a most lovely smile when the music begins. When I tell the Christmas story, she holds the wooden manger a friend made for her, and I believe she remembers.

“At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I’ve grown old, the bell still rings for me as it does for all who truly believe.” ~Chris Van Allsburg, The Polar Express

Oh, the things I’ve learned from Taylor about appreciating that which is most important, turning negative into positive, and believing in miracles and dreams come true. Ten years ago, I was told that any treatment for Taylor’s disease was so far off, it could not come in her lifetime and maybe not even in mine.

That dream of dreams should come true in 2018 with the start of a clinical trial. Children like Taylor will be given the gift of hope — hope made possible in part by the many people who support Taylor’s Tale.

Yet, while we are making real progress for so many children and their families, important work remains. Specifically, we seek to fund the development of the first Standard of Care plan for infantile Batten disease. This plan will address quality of life issues and help doctors and care teams manage infantile Batten disease. It remains crucial even as treatments become viable.

Batten disease has stolen much from Taylor and her family, but the sweet sounds of Christmas still ring clear and strong for us, as it does for all those who truly believe. Thank you for joining us in believing that a better life for children like Taylor will always be a gift worth fighting for.

Wishing you peace, hope and dreams come true in this holiday season and the New Year,

Give the Gift of Hope

Red, My Fortune Cookie

Published: December 23, 2015 ~ 0

By Laura King Edwards

I treated myself to a manicure for Christmas on the way home from the office this afternoon. While I waited for the rich poinsettia red polish to dry, two new customers – a young woman in her 20s and a teenager who had to be her younger sister – searched for the perfect colors on the shelves in front of me.

I always get bored waiting for my nails to dry, and I found myself watching them out of the corner of my eye by the time they’d moved on from the solid reds to the sparkly pinks. continue reading →

What Batten Disease Stole

Published: December 22, 2015 ~ 0

By Laura King Edwards

If my sister didn’t have Batten disease, she would be a senior in high school this year.

But Taylor isn’t a senior. She isn’t taking classes, and her only extracurricular activity is physical therapy. She doesn’t have her driver’s license, and she won’t go to prom. continue reading →

A Christmas Story

Published: December 15, 2015 ~ 0

By Laura King Edwards

At 16, I didn’t want a little sister. But Taylor, an August baby, had my heart long before we celebrated her first Christmas. continue reading →

Christmas After Batten Disease

Published: December 11, 2014 ~ 2

By Laura Edwards

Family has always been important to me, and my family has always made a big deal out of Christmas.

Though my brother and I are grown and my sister is 16, I know that on Christmas morning, we won’t be allowed downstairs until my parents are ready and my dad has his camera phone locked and loaded. Santa Claus doesn’t wrap the gifts he leaves at my parents’ house, and when Stephen and I were little, Dad thought we’d try to sneak into the family room before dawn to peek at the goods. To foil our plans, he set booby traps, like paper Scotch-taped to the doorjambs and verbose notes from Santa’s elves warning us of the measures in place, from retinal scans and tripwires to claymores and drones. He always signed the notes with a smiley face and “Merry Christmas.” After Dad led our human train into the family room at an agonizingly slow pace and we dove into our respective piles of gifts, we dug into Mom’s homemade monkey bread and egg and sausage casserole and ate till we couldn’t eat anymore. It’s been years since I wrote a letter to Santa Claus, but Dad still sets traps and writes notes and leads the train every Christmas morning.

I still remember the first year Stephen and I had to help Taylor find her way to the family room. She’d lost her vision to Batten disease and was unsteady on the stairs in her nightgown and fuzzy socks. In time she’d develop such a keen sixth sense that she could fly up and down those stairs despite the blindness. But in those days my sister was still afraid of the dark. We all hoped and believed she’d find a way to beat Batten disease. Lying in bed at night I even imagined she’d see the light again one day.

So much has changed since my sister’s diagnosis in 2006. When someone you love is fighting a chronic illness with no treatment or cure, you fall into a habit of marking time by holidays and life events and how much things change from one to the next. I remember how difficult it was watching Taylor search for the stairs that first Christmas After Batten Disease. But now I’d give anything to have one day with my sister as she was then – still able to pull surprises out of her stocking and sing along to her favorite Christmas carols and eat Mom’s monkey bread at the dining room table. All normal things we take for granted. All things Batten disease has robbed from her.

I can’t go back in time, and I can’t cure my sister. But Christmas Day will still come, as it always has. And if loss has taught me anything, it’s taught me that life is about living in the moment and recognizing the good that you still have.

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.

Twelve Reasons to Believe: Love

Published: December 25, 2012 ~ 0

By Laura Edwards

The following is 12th in a 12-post series.

I’ve experienced love that withstands the most difficult battles; love that transcends time; love that survives this life and the next. I’ve been touched by real-life angels.

Life on this earth has many wonderful things, but love is the principle reason for living.

Love gives me reason to believe.

Merry Christmas, and best wishes for a New Year filled with great moments and belief in a bright future.

Twelve Reasons to Believe: Every Moment is a Gift

Published: December 24, 2012 ~ 2

By Laura Edwards

The following is 11th in a 12-post series.

Last night, Mom, Taylor and I made our annual trip to uptown Charlotte’s Blumenthal Performing Arts Center for the Nutcracker Ballet.

The Nutcracker has always been Taylor’s favorite part of the Christmas season. It has been a while since the lights went dark for her, but she still remembers the sights of the ballet from before she lost her vision. When the Arabian dancers came onto the stage during the second act, she cried out, “The snake!” The people around us likely wondered what in the heck my little sister was talking about (or why she was talking at all), but Mom and I knew Taylor remembered that several years ago, the female dancer used a prop snake in her dance. And T may be blind now, but she never forgets.

It has been a somber Christmas season for my family, as my beloved grandmother is in her last days in this world (before she got sick, our Nutcracker trio was a quartet). But weeks ago, Mom and I resolved to keep our tradition despite the difficult days both behind and ahead of us.

Only God knows how many more times the three of us will be able to attend together. But for now, we have moments like this.

Moments that give me reason to believe.

The Bell Still Rings for T

Published: December 21, 2011 ~ 0

By Laura Edwards

Taylor and Santa share a moment in 2003

“At one time most of my friends could hear the bell, but as years passed it fell silent for all of them. Even Sarah found that one Christmas she could no longer hear its sweet sound. Though I’ve grown old the bell still rings for me, as it does for all those who truly believe.”

-Chris Van Allsburg, The Polar Express

This holiday season is our sixth since doctors discovered that my little sister, Taylor, has infantile Batten disease. This is my 42nd post in 2011. It’s been a packed, whirlwind kind of year – for the rare disease and Batten disease communities…for my family…for me. And now, just 10 days shy of 2012, I’m exhausted; fresh out of inspiration for this blog.

When I’m wracked with writer’s block, like tonight, I’ll often go back and reread some of my five years’ worth of combined posts on my old blog, Transmissions, and this one for inspiration. I’ve found each year of our unexpected journey to be different than its predecessor, and my own words, read through the lens of increased experience, can be striking. But at the same time, little has changed…because after all, we’re still traveling the same cursed road, looking for an exit sign, hoping we’ll find it in time for T.

The following appeared on my original blog, Transmissions, on Dec. 31, 2008.

Reflections

There are about ~~five hours~~ (ten days) remaining, on the east coast at least, in ~~2008~~ (2011).

I hate New Year’s resolutions and rarely make them. Few of the ones I’ve ever made have lived to see February, and I say, why do we need a new year as an excuse to make a commitment to something important in our lives? Most New Year’s resolutions are hokey or clichéd, like losing weight. The only diet I ever really stuck to was the one I was forced to undergo six weeks before my wedding, when I realized on the day of my portrait shoot that my mother was a beanpole when she got married, and that I’d better starve myself if I hoped to wear her wedding dress for a full six hours (the hour on the front porch of Cone Manor that day was too much).

~~2008~~ (The span from 2008-2011) had its high points, but I’m ready to let it go. I began the ~~year~~ (four-year period) on a cross-country flight to Portland, Oregon, where my sister was slated to be the sixth and final participant in an experimental study that involved the complete shaving of the full head of hair she loved, the drilling of eight boreholes in her skull and a harrowing seven-hour brain surgery during which my family and I sat huddled in the waiting room of the children’s hospital, our fingers crossed and our hearts in our throats. Taylor’s acceptance into the study was a miracle – the decisive phone call from Portland the month prior left us in happy tears – but her participation in it was the scariest thing any of us had ever experienced. Our time in Oregon, like Taylor’s spot in the trial, was a contradiction. We slept little, and I will never forget the way Taylor looked in the recovery room following her surgery. If I had ever for a moment doubted that my sister was sick, I was sure of it then. On the other hand, we couldn’t all stay in her room around the clock, so my husband and my brother and I had the opportunity to see some of one of the most beautiful areas of our country. As nerve-wracking as that week was, I made some great memories on the road to Mount Hood, in the Columbia River Gorge and on the beaches of coastal Oregon. And on the plane ride home, John and I each said what we had both been thinking: Taylor had likely just been given the best chance of survival that any child with Batten Disease has ever been given.

Though the rest of the ~~year~~ (following four years) unfolded more quickly than I could record it (them), those eight days in Portland will stand still in time forever. I still feel as though someone else lived them in my body as I watched from a distance, invisible and silent to the world around me. These last ~~12 months~~ (five years and five months) since the diagnosis, I’ve watched the disease take bits and pieces of my sister that it didn’t already have, but I’ve also watched her learn the Braille alphabet and heard her laugh, again and again. I’ve put blood, sweat and tears into fundraising and building awareness – and it has never been easy – but I’ve had the honor of helping start a non-profit named for my sister, and as much as I fret over the talks I give at our events – as shy as ever – I’ve seen the tears in people’s eyes and felt the warmth in their hands and their hugs after I’ve finished. I’ve watched my family continue to bond and rally around this cause, but I’ve been there on the worst days, too – the days the reality of Taylor’s disease hits us hard in the face. I’ve been there on the days that even when it seemed as though it couldn’t get any worse – as we’ve realized once again that Taylor has a disease no child has ever survived – another family member had a heart attack, or suffered a bad fall, or just went through a hard time. On the night one of my mom’s brothers had a heart attack, I asked her other brother what was happening, and he simply replied, “The sky is falling.” And right then, it was. But before the sky crashed down on us, we came together, and put up our hands, and with all of our might, we pushed the sky right back up again to where it belonged. And the next morning, the sun rose in that sky.

I’m not just anxious about ~~2009~~ (2012)…I’m terrified. I’m not lost on the fact that Taylor has a degenerative disease, and that until she is cured, she will only continue to decline until there is nothing left of the sister I love. In between my nightmares, though, are the good dreams – the ones where the clouds have parted, and the shades over her eyes have been lifted, and she can see once again, and the disease eating away at her has been banished forever. I know that for every good day, there may be a bad one, and vice versa. Tomorrow we may feel lost, but the next day we may only BELIEVE. The harder it rains one day, the brighter the sun shines the next. I can’t live thinking there won’t be more good news, lots of good news. I have to see the good in the bad. I have to BELIEVE that we will find the cure. And I do.

So bring it on, ~~2009~~ (2012). I know there is good to be had in your days. I know there will be tears and frustrations. I know there will be setbacks, but there will also be progress. We have nowhere to go but up. And I’m going to keep on jumping.

Nearly three years after writing that post – true to my word – I’m still jumping. My landings aren’t always that soft, and the bell doesn’t ring quite as clearly as it once did, but we are still here, fighting, believing. And so the bell still rings for T.

Happy holidays to all of our supporters. Thank you for helping us believe.