Just Keep Running

By Laura Edwards

first night with the blindfoldLast night, I broke out a makeshift blindfold for training run number four with my sighted guide, Andrew Swistak. I ran with my eyes closed for our first three runs, but even squeezing them shut didn’t block out all of the light or provide an experience of total blindness. At 10:28 p.m., Andrew and I took off from my mailbox; after a few blindfold adjustments on the run, we found our stride.

Andrew doesn’t tell me where we are on our runs, though if I guess correctly (which is rare), he’ll tell me. But I run with a Garmin Forerunner GPS watch, so afterward, I can connect it to my laptop and get a map of our route. When Andrew drops me off at my house at the end of the night, I feel like I have a pretty good idea of where we went. But it’s obvious from the Garmin maps that my internal compass is all out of whack. Last night, I thought we made it halfway across our neighborhood, which has multiple sections and over 800 houses. But the Garmin map traced a route that covered just eight short streets with lots of cul-de-sacs (great for practicing turns) in a tight area within half a mile of my house. All I can say is, it’s a good thing Andrew signed up to lead me to the finish line of the Thunder Road Half Marathon on Nov. 16.

We covered 3.79 miles in 40:48, so we lost some speed to the blindfold and all of those switchbacks. My ankle’s still a little balky from that first night, too, but it’ll get better. A lot of people say this is a great thing I’m doing for my sister or believe it’s some kind of sacrifice on my part. But I love my training runs with Andrew. I’ve learned a lot about myself as a runner, and I’ve learned more than I ever imagined I could learn about my sister’s dark world. And I can throw my blindfold in the laundry with the rest of my running duds at the end of the night. I can drink in the beauty of another day when the sun rises the morning after a run. I’m not where I want to be for this run on Nov. 16, but I’m sticking with it. I know what Taylor would do if she hit a bump in the road.

She’d just keep running.

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.

The Ghost of Laurel Hill

By Laura Edwards

photo (7)Yesterday morning, I woke with the sun to run the Tar Heel 10 Miler in my little sister’s honor for the fourth consecutive year.

I’ve already collected four race medals for Taylor in 2013, but this one is special. The Tar Heel 10 Miler was just the second competitive race I ever entered; I paid the entry fee for the April 2010 edition not long after watching my sister – blind and suffering from a rare, fatal brain disease – jog across the finish line of Charlotte’s Jingle Jog and Girls on the Run 5Ks on one end of a running buddy’s guiding rope and the wings of her own courage.

The Girls on the Run 5K, staged on a sun-drenched, happy day in May 2009, was Taylor’s second race. It was also her last.

Batten disease has stolen so much from Taylor since it crept into her life that the word “unfair” doesn’t begin to do the job. The ability to run is a precious gift that too many of us take for granted, but my sister has lost many more valuable things.

I wish I could make Batten disease go away. I wish I could work magic – go back in time and give Taylor two good copies of the gene that causes Batten disease or even one good copy (which would make her a healthy carrier, like me). But I can’t.

So I share her story in my own words – both spoken and written. I help support the people who have the knowledge to find answers for children like her – people like Steven Gray, PhD of UNC’s Gene Therapy Center, to which Taylor’s Tale awarded a two-year grant earlier this year.

And I run.

On Saturday morning, I followed the brick sidewalks to the football stadium nestled in the trees on the same campus where Dr. Gray works his magic for children like my sister and where I earned my undergraduate degree. I lined up on the track at field level with 3,253 other runners. When the gun sounded at 7:30, I found an opening in the crowd and sprinted through the stadium tunnel and into my 10-mile mind game.

The Tar Heel 10 Miler, set mostly on the gorgeous UNC campus, has some tough sections, but none come close to Laurel Hill, the 200-foot vertical gain over the course of about one mile at the 8.5-mile mark. It’s so difficult that the race organizers place separate timing mats at the bottom and top and hand out special awards just for the hill, and many self-respecting athletes speed-walk it. I’ve never walked, but I’ve come close.

end of tar heel 2013 I went into Saturday’s race riding a streak of four straight personal records (PRs) for the half marathon, 10 miler, 5K and 10K that started at the Thunder Road Half Marathon in Charlotte last November. Even though I’d beaten my previous 10 miler record by two minutes just two months earlier at a race in Charlotte, I was determined to beat it again.

But when I reached the first Laurel Hill timing mat, things didn’t look good. My quadriceps burned, and worse – I felt winded. I never get winded. I was riding a 7:45/mile pace through the first 8.5 miles, and it’d taken a lot out of me.

As I started the climb, a voice in my head told me it wasn’t my day. I shouldn’t have eaten the sweet potato fries at Top of the Hill the previous night. I shouldn’t have stayed up till midnight watching the Boston Marathon bombing coverage. As I wheezed my way up those 200 vertical feet, I told myself that WHEN I cross the finish line isn’t important to Taylor (which is true). As my Garmin watch beeped its “Behind Pace” beep, again and again…I began to write my post-Tar Heel 10 Miler blog post in my head. I called it, “I Lost My PR and Found My Truth on Laurel Hill.” I talked to myself over my wheezing. “You can do this,” I breathed. “Forget the stupid PR. Just RUN.”

But then, something happened. My quads loosened. The tightness in my chest melted away. The houses perched at the top of Laurel Hill came into view.

For most of the race, I used my Garmin as my guide. I ran for Taylor, but I ran more for myself.

The moment I understood that is when I left the Ghost of Laurel Hill behind.

It seemed like just moments later that the stadium reappeared. I sprinted into the tunnel, down the track and across the finish line.

When I did, the clock read 1:20:48.

I beat my PR for 10 miles by almost two full minutes and ran the Tar Heel 10 Miler four minutes faster than ever before. I finished in the top 16 percent of 3,253 runners. And when I crossed that finish line, I felt as if I could fly.

Almost like I had wings.

The Burden of Believing

By Laura Edwards

ourboys 5KI don’t believe in doing things halfway – least of all when it comes to fighting Batten disease. I get that from my mom.

I used to run 30 miles a week. I ran a minimum of six days out of every week. When races rolled around, my body ached. I averaged a 9:00 mile or slower for long races, but I really had to dig deep for that. I knew I could run faster, but my body wouldn’t respond.

Last fall, I decided to cut back on my mileage. I went to 20 miles a week. A couple of days each week, I traded my runs for walks or weights. I dropped the 10-mile runs. I decided to trust my body. I hoped that if I could keep up a training run for seven or eight miles, I could bring it on race day for 10 or 13.1.

Some people might have said I was “slacking off,” but you know what? My body stopped aching – and I got FASTER. I set a new personal record for 13.1 miles at the Thunder Road Marathon in November. In February, I set a personal record for 10 miles at the Charlotte 10 Miler. In March, I set another record for 3.1 miles at the Run the Creek 5K. My training runs got faster, too. I used to average 10:00 miles for those. Earlier this week, I ran a mile in 5:45. And I didn’t even do that on fresh legs – I’d already run five miles.

The point is that the fight against Batten disease deserves our best, but sometimes, “giving our best” means taking care of ourselves and reserving our energy so that we’ll be fresh when we have to climb the toughest hills. For a long time, I’ve said that this is a journey – not a sprint. I know that there’s only so much we can do with the cards we were dealt. I know that our situation sucks and that nothing that happens in any other facet of my life – regardless of how wonderful it may be – will REPLACE what we have lost and will lose. But I’m not any good to anyone when I’m in my darkest place. I’m not useful when I’m fighting writer’s block at 2 a.m. or yelling at my laptop because the Taylor’s Tale website has a glitch due to some technical issue out of my control. I’m not good to anyone when I’m losing my mind over someone else’s bonehead moves or heartless actions or words. When I find myself in my darkest place, it’s time to hit pause. Sometimes I remember to press the button; other times, I forget. I forgot more often than not over the past six-plus years, and I can’t get that time back. But my memory is improving, and my life – and my net impact on this fight – will get better as a result.

Laura, Mom and Taylor

I LOVE my sister more than anything, and I HATE Batten disease more than anything. I want to eradicate Batten disease, but if Taylor could tell us what she wants and feels, I think she would tell us that she doesn’t want us to eradicate our friendships, marriages, careers and lifelong dreams in the process. She would tell us that we can fight Batten disease and have those things, too. She would tell us that she wants us to be happy. Not “happy” like we were before Batten disease entered our lives or as if we’ve moved on – but “happy” as in we’re going to recognize the things we still have that are good and keep it from robbing us of everything we’ve ever known.

I believe that we CAN win this battle. I just don’t want us to lose everything else that makes us who we are along the way. Razing all the cities in your own kingdom is no way to win a war. If you kill all the bad guys but have to go home to smoldering ruins, what’s the point?

I can’t let Batten disease steal my sister AND everyone who loves her.

Mind over Body

By Laura Edwards

When my alarm went off at 6:15 this morning, the outdoor temp hovered in the mid-30s, and a steady, cold rain sounded like a waterfall in my backyard. Of the 619 runners registered for the Charlotte 10 Miler and 4 Mile Run, 164 stayed home.

But I pulled on my wicking socks, UnderArmour tights, three layers of tech t-shirts – purple on top for Taylor – water-repellent jacket and wicking baseball cap.

I ate a Honey Stinger waffle and Gala apple and drank a glass of water.

I laced up my Brooks Glycerin 9s – shoes that served me well for 500+ miles in 2012 but that are balder than a tire on a junkyard car.

I posed for the requisite pre-race, pre-soaking photo.

pre-Charlotte 10 Miler 2013

I climbed in the car with my husband, drove three miles to the starting line and shivered in the rain for 20 minutes until the horn for the 10-mile race sounded. When it did, I discovered that in an effort to steal a few dry square inches beneath the starter’s tent, I’d found a puddle at least a couple of inches deep. Needless to say, my nice, warm, cushioned socks were soaked through.

I didn’t have time to worry about it, though – I had a race to run! I’m a bit of a perfectionist, so whenever I run a race, I want to set a new personal record (PR). My PR for any 10-miler is 1:25:27; my PR for the Charlotte 10 Miler, in only its second year of existence, is 1:26:10.

I’m a pretty consistent runner, which means that if I have any notion of setting a PR, I have no margin for error. I stuffed my iPhone in its double-Ziploc-bag fortress, stuffed that into my jacket pocket, pulled on my gloves, kicked up my water-logged, no-tread shoes and kicked it into high gear.

Two miles in, I entered one of south Charlotte’s greenways and met up with a friend who’d offered to run with me throughout a good portion of the race. Andrew competes in ultramarathons, so my rainy 10-mile race probably felt like a walk in the water park to him.

I usually run with an app that keeps me informed re: my distance and average pace, but today, I traded in my headphones for my running buddy. Andrew paced me, watched out for the wannabe lake-puddles on the greenway’s boardwalks and helped me stay motivated. He talked me through the killer hill on mile eight. I wanted to walk that hill last year, but I jogged it; this year, I RAN it. A few times, he coached me on when to pass people. In the last mile, he scoped out a runner who most likely fell into my age group; I smoked her.

Somewhere on the course, Andrew told me that running’s mostly a mind game.

I believe that.

When I heard that horn sound at the start line and saw the Boston Marathon jacket on the runner next to me – a runner probably in the 30-34 females group just like me – I thought about how I ran my first organized race of ANY distance barely five years ago, and how soccer chewed up my joints and spit them out, and how those joints probably belong in a trash can, not on a race course. I thought about the rain and the bald tires on my feet. And I figured I wouldn’t be setting a new PR. Not today.

Charlotte 10 Miler 2013 finish

But I did.

And out of the 179 runners – male or female – who actually braved the rain to run the 10-miler, I finished 27th.

I don’t know why my sister has to have Batten disease. I wish she could will her broken body to fight off the monster the way I can will my broken body to run long races, rain or shine.

But I do know this: we know how to dance in the rain. And after a good rain, the sun always comes out to play. There’s a monster called Batten disease in our midst, but good things are coming just the same. I can feel it.

I believe.

If You Have Wings, You Fly

By Laura Edwards

before Thunder RoadI opened my eyes a few minutes before 5:30 a.m. on Saturday, Nov. 17 with surprising ease. I swung my bare feet out from under my warm down comforter and winced – but only a little – when they first hit the cold hardwood floor. First in the bathroom, then in the closet, I went through the robotic motions of brushing my teeth, splashing lukewarm water onto my sleep-deprived face, pulling my hair into a ponytail and trading my cotton pjs for compression tights and thin, sweat-wicking layers on top – purple for Taylor’s Tale. I coaxed my still-dreaming dog into the kitchen, where my friend Kelli and I toasted bagels and drank juice and wished for more time.

After snapping a few photos and checking our gear not once, but twice for good measure, we drove two miles to the nearest light rail station and, after 10 minutes in the teeth-chattering morning chill (we didn’t take jackets), snagged a ride to uptown Charlotte for the Thunder Road Half Marathon. Each time the train stopped, more runners joined us. As we rode, I thought about how I hadn’t really trained – at least not to the extent that I’d trained for other races. I thought about how I should have worn a top layer with pockets for tissues (I’d had a nasty head cold all week). I thought about how I could have stuffed extra moleskin and bandages into those pockets, too (I had a walnut-sized blood blister on the bottom of my left foot from a 10-mile run a week earlier).

As we got closer and closer to uptown, I threw my time goal out the window. And as the train coasted into our destination, I turned to Kelli and said, “I’m just going to have fun today. No pressure!”

As we stood inside the climate-controlled convention center, stealing a few minutes of warmth before the race began,  I reached down to check the contents of my tiny waist pack one last time…except that I couldn’t open it. Somehow, the zipper got jammed, trapping my energy beans and Chapstick inside. Neither are super important in the grand scheme of things, but most runners are particular about their routines, and I’m no exception. And I have to have my energy beans and Chapstick when I go for a long run.

Somehow, though, I got over it. We made our way outdoors into the throng of thousands packed into a few city blocks, and when the race began at 7:45 a.m., we inched forward with the others until we crossed the timing mat, then walked till the pack leaders burst ahead, making room for the rest of us. And then, after what seemed like an eternity but in reality was likely about a minute, we broke free.

I knew right away that things would go better than I’d expected. The air didn’t seem nearly as cold as it did just moments earlier, and it felt good when it filled my lungs. Every time I approached a hill, I found an unexpected burst of energy. My head felt clear. My foot didn’t hurt at all. I settled into a fairly consistent pace of about 8:50/mile – a little slower than my typical pace for 10-mile races but faster than my fastest half marathon pace.

After a particularly long climb around mile five, I got a little winded. I never thought about walking. I did consider slowing down. But then, I thought about how Taylor ran part of the same course in her first 5K, in December 2008, and never once stopped to walk (even when she fell and scraped her knees). I remembered that one of my sister’s former classmates and his father were somewhere on the half marathon course at that very moment – running for her – and that they had vowed to run the entire way, because Taylor never gave up. I thought about Kelli, somewhere behind me, and a handful of others who’d dedicated their race to my little sister and her courageous battle against a disease that has stolen her ability to run (and so much else) since an incredible year in which she ran two 5K races and a practice 5K. I thought of all of those things, and I kept running.

Less than a mile before the finish line, I ran beneath the bridge where, during the same race two years ago, I approached a runner with a cane. Blind, he nevertheless completed an urban half marathon without the assistance of a guide. He provided the final push I needed to finish my race that day. This time, I had only my own will and the image of my little sister, fighting a demon of a disease at home, nine miles away.

TR medalNo matter how a race goes, I always end with a dash to the finish line. As soon as the final timing mat and those six glorious letters come into view, I shift gears and finish with a hard sprint. But just as I began to make my break for the end of Thunder Road, I tweaked my left calf muscle. At that very moment, the pain felt so excruciating that I immediately thought I tore something. I never envisioned crawling across the finish line, but for a brief moment, I thought I might be forced to do so.

Somehow, though, I managed to jog-hop the last 100 yards of the 13.1-mile course. I finished with a time of 1:57:20, good for a new personal record (PR) in the half marathon. And as I wrapped myself in an aluminum blanket and poured water down my throat, I discovered that the pain in my leg was gone, replaced by an all-over feel-good sensation.

I know that I can’t run Batten disease out of Taylor’s life. I know that I can’t chase down a therapy for kids like my sister, no matter how much I train. I know that the running is mostly for me. It’s my therapy. But it’s darn good therapy; without it, I wouldn’t have the guts or the energy to fight this monster day in and day out. And if telling my crazy running stories translates into one more comrade for us in the fight against Batten disease, it’s all worth it to me.

The day after the race, of course, I paid the price for recording a new personal record with a head cold, the world’s biggest blood blister and a slack training schedule. But I didn’t care then, and I don’t care now. Taylor gave me wings. And if you have wings, you fly.

Uncommon Magic

By Laura Edwards

jump ropeDuring Taylor’s fifth grade year, a wonderful thing called Girls on the Run came to her small, private school. Already blind and struggling with her speech, Taylor nevertheless wanted nothing more than to go through the program with her girlfriends. That year, a modified jump rope and an upper school student with a big heart became her lifelines. They helped Taylor experience some sense of normalcy and, in doing so, created an uncommon magic that changed all of our lives forever.

Yesterday, Girls on the Run founder Molly Barker published a post on the Athleta Chi website. The post, originally printed in Endurance Magazine in 2009, could have only been penned by someone lucky enough to witness the amazing event it describes. Barely 24 hours old on the web, it’s already gone viral, but if you haven’t had a chance to read it, I encourage you to do so by clicking on the link at the end of this post. It will be well worth your time – I promise.

In all my years on this earth, I’ve never come across anything as tragic or daunting as Batten disease. I’ve run many miles in the six-plus years since Taylor’s diagnosis, but on many of those days, part of me has wanted to simply run away – to quit fighting. But through it all, Taylor – the one who stands to lose the most – has taught the rest of us an incredible lesson about courage – about honoring every moment we’re given, about friendship, about love, about believing. Taylor may be blind, but she opened our eyes to what really matters most in this world. Taylor can no longer run, but she – and those of us who love her – will treasure her Girls on the Run experience – and more importantly – the gift of having known her – forever.


I shared a link to Molly Barker’s post on the Taylor’s Tale Facebook page yesterday. Today, the father of one of her former classmates shared the following response:

My son Nicholas and I will be running the Half Marathon. This will be our second year and we hope not to have such a “battle” for last place. Neither of us are runners but we are doing it for the challenge. I mentioned to Nicholas that Taylor (he was a year behind her at Fletcher) did a 5K without stopping and I told him we can’t even think about waking or slowing down before mile 3 because no matter how “tired” we may be, we need to push through just like Taylor did. We’ll be wearing pink shirts to show our support for Taylor.

Most of Batten disease is really bad; I think this message embodies all that is GOOD about our fight against Batten disease. As I said before, I’ve never come across anything quite so tragic or daunting. And I could come up with a thousand other equally horrible and appropriate words to describe it. But Nicholas’ dad’s message gave me tears of joy. It gave me the strength to believe – for one more day. I, too, will run the Thunder Road Half Marathon for Taylor in less than two weeks. I may not see Nicholas and his dad among the thousands of other runners. But together or apart, we’ll push through. For Taylor. Read Molly Barker’s blog post

Neuronal Ceroid Lipofuscinosis

By Laura Edwards

I hate July 24.

On June 3, 2006, my grandparents hosted my wedding shower at their house in Wake Forest, NC. It was the first day of the happiest seven weeks of my life. At the time, I had no way of knowing that it would be the next-to-last time that I would have my entire family and my closest friends together for a happy occasion (my wedding would be the last). We grilled burgers and chicken and dined on card tables set up on the lawn behind Grandma Kathryn’s beloved back porch. The sun sank beneath the horizon about the time John and I opened the last gift and my grandfather polished off the last piece of cake; my little sister, Taylor, and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears.

Taylor and Morgan in leis

On June 24, I married my best friend from high school in a beautiful inn famous for its lush gardens in the mountains of North Carolina. Taylor and Morgan ruled the tiny, makeshift dance floor in the inn’s parlor after the ceremony.

On July 24, my husband and I wished each other a happy one-month wedding anniversary, kissed each other goodbye and headed our separate ways for work. As I drove to the office under a clear blue sky, I thanked God for all the gifts He had given me. I was newly married to my best friend and had an amazing family, a great job and even a promising novel in the works. I felt invincible.

A few minutes after 10 that morning, I hit ‘save’ on a press release to take a call from my mother.

I can’t remember much of what Mom said to me. I don’t know how much I heard over the loud ringing that filled my ears after she said the words “neuronal ceroid lipofuscinosis” in reference to Taylor. I remember, with my sobbing mother still on the phone, Googling that phrase with trembling fingers and crumpling into my chair like a crushed soda can when I read the summaries listed with the search results until my eyes filled with tears and I couldn’t read any longer. The words and phrases shot off the screen and straight into me like icy daggers, each one more awful than the last:





Motor deterioration.

Cognitive deterioration.


No treatment.

No cure.

Early death.

I don’t remember the rest of that phone call, but I will remember July 24, 2006 for as long as I live.

Taylor doesn’t chase fireflies in the moonlight anymore, but I will never forget the innocent beauty of that night she shared with our cousin, Morgan, before a sleeping genetic defect awoke from its seven-year slumber and began its systematic destruction of a life with great promise.

I no longer need Google to tell me what neuronal ceroid lipofuscinosis – or Batten disease – does to a child like Taylor. I’m an expert on a disorder I never wanted to know. I’ve spent time with the world’s greatest Batten disease scientists. I’ve seen it unfold in real life. I’ve watched it wreak havoc on my sister. I’ve seen the names of children I know added to the list of “Batten angels.”

I declared two wars on Batten disease on July 24, 2006 – the war for my little sister, and the war to end Batten disease forever.

Batten disease is winning the war for my little sister. It’s had six long years to do its dark work.

As I’ve watched how Taylor has faced her disease, I’ve realized one thing that gives me satisfaction, if not true solace:

Batten disease may have the power to destroy a life with great promise.

But it can never destroy a heart with great love.

Dance with Me

By Laura Edwards

20120722-195412.jpg Five years ago, just days shy of the one-year anniversary of my little sister’s diagnosis, Mom and I flew to Rochester, NY for our first Batten Disease Support & Research Association annual conference. The airport shuttle dropped us off in a parking garage beneath the hotel, and we rode an escalator up to the lobby.

I will never forget the moment we stepped off that escalator into a sea of children strapped into wheelchairs with ugly IV bags and feeding tubes and beautiful yet broken eyes. Right then, standing in that lobby, more than 700 miles from my golden-haired, caramel-eyed sister with the sharp wit, sassy smile and broken gene, Mom turned, hid her face against my shoulder, willed herself not to cry and willed Taylor’s fate not to deliver on its horrible promise. That day, Mom vowed to never take Taylor to a BDSRA conference.

This year, the conference came to our hometown of Charlotte, NC. Affected children and their families and scientific and medical experts from all over the world spent four days in a hotel just a 10-minute drive from my parents’ neighborhood. But still, Mom held true to the vow she made in that hotel lobby in Rochester at the dawn of our journey.

The BDSRA conference always includes a Saturday night banquet that begins with a procession of affected children into the hotel’s ballroom followed by a dance (siblings dance to raise money for BDSRA, and others get in on the fun). I didn’t dance last night, even though I’m a sibling and my husband and dad joined Mom and me at the banquet. Instead, when I wasn’t working with a good friend there to film a video for Taylor’s Tale, I stood on the edge of the parquet dance floor and watched. I thought about how much Taylor, at home with a respite care worker, would have loved the dancing part of the banquet. I smiled at the memory of our friend Callie’s wedding in May, when Mom, Dad and Taylor ruled a small corner of the beach house’s dance floor, and smiled even more broadly at the image of my sister and my cousin Morgan in their matching flower girl dresses, twirling around the foyer of the Inn at Ragged Gardens at my own wedding exactly one month to the day before Taylor’s diagnosis.

As I watched, I noticed Emily, a beautiful, blonde angel of a little girl, ruling the dance floor much as Taylor did at her age. As my gaze followed Emily’s twirls and jumps and spins, it landed on her father, Tracy. In that moment, Tracy rocked to a much slower song than the one that played from the DJ’s speakers. He held Emily’s affected twin sister, Laine, in his arms.

I hate, hate, hate this disease.

That’s all.

Big Damn Fish

By Laura Edwards

big fishI’ve never been a huge fan of fishing; I don’t have the patience. I can’t stand it when I go long stretches of time without a bite or – worse – when a fish steals my bait. I like chilling on boats and beaches and riverbanks, losing myself in a good book or good conversation or simply soaking up the sunshine while other people fish.

Taylor has more patience than me – and more of a knack for fishing, apparently. My parents took my little sister out to a friend’s farm in a neighboring county late this afternoon and let her drop a hook in a stocked pond. Her catches grew more impressive as the shadows lengthened.

Fighting Batten disease, I’ve learned, is kind of like fishing. I have to be patient. If I spend too much time distracted by other things, I won’t be rewarded with progress. I have to keep an eye on the bobber. If I don’t, all of the fish might get away (and steal my bait!). But I’ve also learned that life, like fishing, isn’t fun if it’s all work and no play; if I’m 100 percent focused on the bobber all the time and never allow myself to look away – to read a page in my book or share in good conversation or soak up some rays from the sun – I’ll get burned out; I might learn to HATE fishing; and I might just let the big damn fish – the one fish we really want – get away for good.