What is Courage?

Published: October 22, 2014 ~ 2

By Judy Mayer

By Sharon King

My home office is more than just messy – it’s a disaster. It would be a lie to blame the mess on our recent home renovation, an effort in part to make the house more accessible for Taylor. My office was begging for some organization long before walls started coming down. But during the project, we had to find a temporary home for “stuff.” The office was an obvious place, and you know how it is – a mess tends to breed a bigger mess.

After months of promises, I finally began tackling the mess this past weekend. I’ve sorted and cleared files, donated Taylor’s old art supplies, disposed of collected clutter…and you can hardly tell I’ve started. I’ve found a few forgotten treasures, though, including a fifth grade project that Taylor did with her teacher, Miss Jill. It was stashed behind a cabinet.

This year has been a turning point for Taylor. For a long time, it felt as if we’d kept the Batten monster at bay. Then, on New Year’s Eve, the real invasion began. We met Laura and John in a restaurant to welcome in 2014. There was lots of celebrating and lots of noise. All of a sudden, Taylor spun out of control, and it took hours to calm her. Since then, there have been multiple trips to the ER with tremors and seizures. Our happy chatterbox has stopped talking. A feeding tube was placed in June.

I do my best to wear a happy face, but most days are pretty tough. I despise feeling so helpless. I’ve been a control freak for as long as I can remember, but I’ve met my match. Batten disease takes no prisoners. Batten disease can make you feel totally helpless, yet people wonder at my “bravery” all the time.

In my mind, a display of courage would be skydiving, singing our national anthem in the Carolina Panthers’ stadium or participating in a clinical trial. It seems that often, bravery is about taking some kind of action and requires a choice. There’s no way I’m brave enough to jump out of an airplane, and I’ll never try. I might find the nerve to sing in front of tens of thousands, but the real test of bravery would be the audience’s. I’ve never participated in a clinical trial, but I know now that I would if I needed the hope it could provide. Taylor participated in a clinical trial, but she didn’t make the decision on her own. Her parents chose to allow her participation, and it required every ounce of bravery we could muster. Taylor, of course, was the patient. Taylor is the bravest person I know.

“Courage is like love, it must have hope for nourishment.”

~Napoleon Bonaparte

So yes, I guess I have courage. I know that I’m hopeful and that my hope is nourished in different ways, including staying in the fight for answers for children like Taylor. But it has been a long time since my daughter’s diagnosis. While there have been exciting developments in the research space, they’re never enough for a mom watching her child lose everything precious – her ability to see the sunlight streaming through her bedroom window; to walk around the block; to eat her favorite mac and cheese.

A South Carolina family is facing a similar journey as their daughter, Eliza, battles Sanfilippo Syndrome. You may have seen their video that went viral last spring. Eliza’s mom speaks for so many patients in the rare disease community:

“Hope is a nice word, but we need action.”

Maybe courage is really more about action than hope.

Sorry, Napoleon.

The Passage of Time

Published: September 9, 2014 ~ 5

By Laura Edwards

My grandmother, Margaret Rodwell King, died peacefully on August 31. My dad asked me to give a eulogy at her memorial service. It wasn’t until after reading my own words aloud in our church sanctuary yesterday afternoon that I realized how much they were influenced by my family’s battle for Taylor, the lessons my grandmother taught me and the love that serves to guide us through an imperfect but beautiful world.

My Grandma Margaret was an accomplished woman. She was a Duke graduate, a community leader, and a political dynamo. She worked hard for a cause she believed in and mentored others throughout a volunteer career that spanned more than 50 years, and she did it without asking for anything in return. She was an outstanding public servant, a wonderful role model, and a loyal friend.

But to me, she was just Grandma Margaret. And while she may have been a rock star campaign manager and a hall of famer and a university trustee, none of that mattered to me. Because when I was a kid, she made the world’s best grilled cheese sandwich.

I grew up five minutes from my grandparents’ house in Barclay Downs. It had a pool table and a pinball machine, a turtle pond and a big-screen TV with a Sega Genesis video game system, and a Laserdisc player that rated as high-tech when I was growing up. It was the ultimate playground for kids.

The best part, though, just might have been my grandmother’s grilled cheese sandwiches. She used Pepperidge Farm white bread, real butter, and American cheese melted just so. And she had a magic pan.

I can’t tell you what makes a frying pan magic or where you purchase such a thing. But Grandma Margaret said hers was magic, and I believed her. She wouldn’t make my grilled cheese sandwiches in anything else. If the pan was dirty, she broke out a sponge. When we went to the beach, the pan went, too. The pan’s “magic” came to symbolize the magic of long hours spent at the house on 431 Scofield Road and lazy weeks in the condo at Windy Hill Beach.

The passage of time is a funny thing. They say the more things change, the more they stay the same. But I’ve come to understand that some things just change.

Some years after my Granddaddy Parks passed away, Grandma Margaret moved out of the house on Scofield and into an apartment at Merrywood.

I don’t know what became of the magic pan.

When she was still finding her way at her new home, my grandmother took a journaling class. One of her first assignments was to write a letter to someone – God, a neighbor, family member, friend, opponent, someone she admired…

Grandma Margaret with the girls She wrote a letter to my sister Taylor—out of all of her grandchildren, probably the one she got to know the least well.

In it, she wrote of finding her place at Merrywood; she lamented that she could not see my sister more often, but said she understood that growing up and going to school could keep a person busy. She suggested Taylor write a letter to her sometime.

I’ll never get to ask her why she chose to write to my sister.

Maybe she wished she’d gotten to know Taylor better or had opportunities to spend time with her like she did with the rest of her grandchildren. Taylor was so young when life changed for Grandma Margaret; my sister never even met my Granddaddy Parks.

Our time here together is short, but that only serves to make the experiences we have that much more meaningful.

Hold the people you love close to your heart. Cherish each day.

I’m so thankful I had the time with my grandmother that I did.

And I thank God that today, she’s at peace.

The One who Lost the Most

Published: September 3, 2014 ~ 10

By Laura Edwards

Some of my coworkers stayed late at the office tonight for their annual fantasy football league draft. When the email went out a couple of weeks ago, I considered joining in. I thought it’d be fun to show some of the guys this girl knows a thing or two about NFL football.

But I decided I couldn’t add one more thing to my plate, opting instead to live vicariously through my husband, who plays in two leagues (this past Sunday night, I shared my draft pick recommendations between working on a book manuscript and hammering out travel details for upcoming races).

The truth is that I’ve been “too busy” for a lot of things for most of my adult life. Fresh out of college, I moonlighted as a sportswriter in addition to working a full-time job in marketing and public relations, coaching a traveling soccer team and planning a wedding. The young adult novel I’d started writing my senior year languished on my hard drive, and I figured I’d finish it as soon as I got married.

A month after my wedding, Batten disease happened.

Suffice it to say, I never finished the young adult novel. At first, I blamed it on the plot line (one of the main characters is dying of brain cancer). Then, I blamed it on all of the other things that clamored for my time. I was just 24, with a good job, a new husband and a “five-year plan.” But suddenly, I’d joined my mom and a small team of volunteers on an inspiring but terrifying mission to build an organization from the ground up and challenge a fatal disease with no cure head on. I was the girl who said she’d never join the Junior League, but before I knew it, my calendar was filled with committee meetings and fundraisers. I was a lifelong introvert, but a few months after Taylor’s Tale was founded in my sister’s honor, I was speaking to crowds.

The struggle for balance is never-ending. I used to worry that if I shut down my laptop too early on a weeknight or gave myself the day off, I was shorting my sister a chance at survival. I don’t do that anymore, but I do think about how much we can do as a society to build a better future for the millions like Taylor and how much we’re NOT doing. I think about how I can be the very best advocate for the rare disease community and the very best big sister to Taylor. I do worry that at times, I’ve been a better advocate than a sister. I know that while I “gave up” a lot of my 20s and early 30s, I made that decision on my own – and I’ve still managed to have a pretty great life, though I’d like to get more sleep occasionally.

These past eight-plus years haven’t been easy, and I’ve learned a lot of tough lessons, the toughest of which may be this:

I’m not the one who lost out, because I’m not the one who got Batten disease. My sister did, and she’ll never have many of the opportunities or experiences I’ve been blessed with. But she’s taught me more about life than I could ever hope to teach her.

Sweet Sixteen

Published: August 18, 2014 ~ 22

By Laura Edwards

birthday cake Tomorrow (August 19) is Taylor’s 16th birthday. In honor of my little sister’s Sweet Sixteen, I’m asking my readers to do at least one of the following:

Leave a birthday message for Taylor in the comments below; I’ll share each one with her.
Tell at least one person about Batten disease (learn more here).
Like Taylor’s Tale on Facebook and follow us on Twitter.
Wear something purple on Tuesday. Tell friends why you’re wearing purple (the color for Taylor’s Tale) and post a photo on social media with a link to this blog.
Make a gift to Taylor’s Tale to support our efforts on behalf of millions like Taylor fighting a rare disease. All gifts are 100 percent tax-deductible. Donate here.
Go for a run and dedicate your miles to Taylor, who once ran two 5K races after losing her vision to Batten disease (her courage inspired me to run a half marathon blindfolded last year, and I just kicked off a quest to run a race in all 50 states). Share a post about your run for Taylor in the comments below and on social media.

Happy early birthday to the best sister in the world. I love you, T!

A Lifetime of Lessons

Published: July 24, 2014 ~ 0

By Laura Edwards

Eight years ago today, my little sister was diagnosed with infantile Batten disease. This photo was taken several months later. We caught a hayride to a pumpkin patch on a farm, and she helped me pick out the perfect pumpkin.

pumpkin patch

Back then, Taylor still smiled for the camera and blinked in bright sunlight. She talked a mile a minute and ran up and down the stairs with her dog at her heels. She went to school and danced with boys under a disco ball in the school cafeteria. She went to the mall with her girlfriends on the weekends.

Since then, she’s taught me a lifetime of lessons about faith and courage. Batten disease may be winning this battle, but Taylor’s still fighting. I think I’ll keep fighting, too.

back porch

The Dying of the Light

Published: July 7, 2014 ~ 4

By Laura Edwards

My grandparents used to have a beach house on Oak Island, a finger of land at the southern tip of North Carolina. Nearly every summer, we spent the Fourth of July week on the island; on the Fourth, we packed a huge picnic, piled into cars, drove across the Intracoastal Waterway and into Southport, a charming town raised where the Cape Fear River meets the Atlantic Ocean.

Before reaching the waterfront park, as if we didn’t already have enough food, we stopped at Hardee’s for a southern feast of fried chicken and biscuits and mashed potatoes and gravy and sugary sweet tea.

At the water’s edge, we spread our blankets on the short-clipped grass and stretched out to fill our bellies under a hazy blue sky while the boats drifted by. As the evening wore on, the lawn filled. My brother and I danced through the blankets and chairs clutching soft dollar bills from my Grandma Kathryn. We bought snow cones and glow-necklaces at the pier before the summer sun disappeared and the fireworks lit up the sky.

Time changes us all.

My grandparents had to sell the beach house around the time Taylor was born; it’s been many years since I last saw the Cape Fear River sky lit up by sparkling streaks of red, blue, green, purple, orange, yellow, silver and gold. My grandmother fought a brave battle against Lewy body dementia, but Lewy body dementia always wins; we said goodbye to her on Christmas Day 2012. And my sister, whose bright eyes used to drink in the world and all its beauty, lives in a world of darkness.

This Fourth of July, John and I invited family and friends to our house to eat burgers and brats and watch the World Cup. Toward the end of the afternoon, my parents and Taylor appeared at the door. My sister has, thankfully, gained weight since her scary stint in the hospital. She looked pretty in her cotton dress, perfect for a summer cookout. She couldn’t eat with us.

After everyone left and the kitchen was clean, John and I piled into the back of my parents’ car and went uptown with them to find a parking lot where we could watch the fireworks shot off from the minor league baseball stadium. The home team’s pitching staff isn’t very good, and the game ran late. We sat in our folding chairs for a long while and talked while we waited for the show. It was unseasonably cool and felt nice, but I missed the salt breeze on my face and the aroma of my Papa Jerry’s bucket of fried chicken, even though I never ate it.

Finally, the fireworks began. I watched in silence next to my sister’s wheelchair. I remembered our own private fireworks show in Mom and Dad’s driveway just two years earlier. That night, Taylor sat in a golf chair and clapped each time Dad shot a Roman candle or bottle rocket into the night. As they exploded over the front yard, I called out the colors, one by one, to my blind sister.

Taylor didn’t clap for the fireworks this time. Instead, I held her hand in its soft purple brace. As the show ended, I savored the warmth of her touch, and I watched the dying of the light.

Good Medicine

Published: June 23, 2014 ~ 6

By Laura Edwards

Taylor came home today. She spent six nights in Levine Children’s Hospital. On Saturday, she had a surgical procedure that represents a milestone. It’s not a happy milestone, like losing a front tooth or outgrowing training wheels or getting a first kiss. Families fighting a life-threatening disease have “milestones” they hope they’ll never reach.

Some things about the surgery have been “good.” My sister always had a beautiful complexion. She’ll be 16 in August; at her age, I think I would have given just about anything to have skin like hers. Since Saturday morning, the color has eased back into Taylor’s face, and the dark circles that ringed her bottomless eyes have begun to fade. And though it will take some time before she regains her strength and we all get used to our new “normal,” I saw my sister’s fire flicker not long after she returned to the small hospital room that served as her home for almost a week.

Charlotte, right, paid a special visit to Taylor on Sunday.

There are good people in this world, as I’m often reminded. Good people are good medicine. Thank you to everyone who reached out to me, via this blog or social media or email or phone or the old-fashioned way, to let me know that my sister is in their thoughts and prayers. Thank you to Dawn, who takes care of Taylor because it’s her job but also because she loves my sister. Thank you to Linda, a good family friend, who read “Green Eggs and Ham” to Taylor on a bright, sunny afternoon when my sister couldn’t get outside to feel the sun’s rays on her skin. Linda’s funny voices – different for every character in the book – made my sister laugh more than I’ve heard in a long time. Thank you to Jill, Taylor’s vision teacher for many years, who spent time with her as she recovered and once gave her the gift of words after her world faded to black. Thank you to Charlotte, my sister’s best friend from Fletcher and an angel. I didn’t cry on Saturday morning when I watched them wheel my sister back to the operating room, but I held back tears when Charlotte knelt by my sister’s bed and placed a framed photo from their fourth grade trip to the Radio Disney station in my sister’s hands.

Charlotte will be a junior in high school next year. Taylor should be a rising junior in high school, too. She should be learning to drive. She should be walking and running, around a track or on a field or after boys. She should be enjoying her summer vacation.

I’ve watched my sister struggle with a learning disability and lose her vision. I’ve watched her suffer from seizures. I’ve watched her fine motor coordination dwindle. I’ve watched her run 5Ks without the gift of sight 10 short months after harrowing brain surgery on the other side of the continent. I’ve watched her run her last race. I’ve watched her lose her ability to walk. I’ve heard her sing her last notes. I’ve heard her say “I love you” for the last time. So why is this milestone so hard to bear?

Our fight has never been so difficult, but I’m as motivated as ever to beat Batten disease and other rare diseases. The science exists to build a better future – soon – for people like Taylor. Learn more about our efforts here.

Talking to God Among Fireflies

Published: June 20, 2014 ~ 5

By Laura Edwards

Taylor will have surgery in the morning.

Tomorrow is the first day of summer. There’s a special magic about the longest days of the year, especially when you’re a kid; diving into the deep end of the pool and feeling the cold travel through you; eating popsicles on the porch railing till the juice dribbles down your chin; playing outside till the crickets chant and the fireflies light the shadows between the streetlights.

No kid should spend the first day of summer in a hospital.

Some people told us this surgery is a good thing, considering the circumstances. It will make things easier, they said.

I understand what they’re trying to say. And I’ve never hid from the reality of Batten disease, even that first summer we knew, when my sister still ran and jumped and sang and her eyes still saw the fireflies. But while I agree this surgery is necessary and even that it will make things “easier,” I don’t think it’s a good thing. Taylor won’t taste her own birthday cake when she turns 16 in eight weeks. Nothing about Batten disease is good.

I ran a solo 5K for Taylor tonight, because my legs wanted and needed to run for Taylor. Near the end of my run, I found myself on the gravel path around the pond in my neighborhood. As the sun dropped below the horizon, the fireflies came out to play. I stood in a stand of trees to watch them, and as I did, I found myself talking to God. I asked Him to give my sister strength, because that’s what she’s given me.

Pizza is a Privilege

Published: June 19, 2014 ~ 14

By Laura Edwards

Taylor was admitted to Levine Children’s Hospital on Tuesday afternoon. When you’re fighting Batten disease, nothing is ever easy. But we’re all facing a crisis this week.

My mom used to be the queen of nighttime volunteer meetings, and growing up, we ate a lot of my dad’s grilled cheese sandwiches and Papa John’s pizzas for dinner. Taylor taught herself to read when she was 3, and I’ll never forget the day she read a picture book to me in the time that it took Dad to run into the neighborhood Papa John’s and pick up a pizza while we waited in the car.

I babysat my little sister more times than I can count. We spent a lot of hours snuggling on the couch in my parents’ basement, eating slices of plain cheese pizza, slurping Diet Coke through straws and devouring stacks of Disney movies on DVD. After I got married, we had a lot of pizza nights at my house. Mom and Dad packed a bag for her if they knew they’d be late, and when they finally tiptoed through the back door, they’d find Taylor curled up asleep with my dog, Daisy, dressed in pink pajamas and fuzzy pink socks.

When Taylor got older, she befriended Callie, who’s closer to my age and met our mom through another one of the community organizations she served. We had girls’ nights at Callie’s – Taylor, Mom, Callie and I. Callie always had pizza dough, and Taylor loved to make homemade pizza at Callie’s. She loved to feel the cool, sticky dough between her fingers. One night, we made chocolate cake to celebrate Taylor’s half birthday, even though it was almost a month away. My sister decorated the cake with lots of rainbow snowflakes, sprinkles and icing. Her vision was starting to fade by then, and that cake looked a lot like a Jackson Pollock painting, but I thought it was beautiful. We played Taylor’s favorite music and moved the kitchen chairs to dance, and the dogs ran between our legs. After dinner, we sang to my sister, even though it was only her half birthday. Callie didn’t have any birthday candles, so Taylor blew out a tea light in the middle of the Jackson Pollock cake.

It’s been years since my sister saw a sunrise, and she won’t walk without assistance again. So why is it so hard for me to accept that she’ll never eat another slice of pizza or a piece of birthday cake?