Unexpected Angels

By Laura Edwards

A few weeks ago, Taylor and my parents flew about 3,000 miles from our hometown of Charlotte, NC, to Portland, OR, the misty city guarded by towering evergreens where my sister had brain surgery in a hospital on a hill five years ago.

My sister isn’t the same chatty, bouncy girl whose golden locks we received in a Ziploc bag in the family waiting room moments after they wheeled her back for surgery on that cold, gray morning in January 2008. The cross-country trips to Oregon for follow-up care have grown more difficult with each passing year.

For this, their last scheduled visit of the five-year follow-up study, my family had a connecting flight in Phoenix, AZ. My parents had several large carry-on bags to manage in addition to my sister. They had just minutes to get to their connecting flight, scheduled to leave from a terminal on the opposite end of the airport. Mom later told me that as they struggled to make it with their bags and my sister, who can’t see or run, she couldn’t help but think that airports are difficult to navigate for people with disabilities and too much luggage.

Then, a man in a shirt and tie discovered their dilemma. Also from Charlotte, he was on his way to a business meeting. His flight left from a different terminal, but he carried several of my family’s bags and walked with them all the way to their gate. On the long journey, they learned that he has physical therapists and occupational therapists in the family and believes in people who help others overcome injuries and disabilities; but through all the frenzy, they never got his name. Mom told me that if he hadn’t helped them, they would have missed their connecting flight to Portland.

Montego BayWhen my parents finally got on the plane and inched down the aisle towards their seats, they realized that they’d have to maneuver my sister over an elderly woman seated alone. A grandmotherly type, she had a “Pooh bear” shape, chocolate skin and silver hair, and the eyes behind her thick glasses looked kind. She told Mom that after selling Avon makeup for 32 years, she’d finally won a trip to Jamaica. She didn’t have a person in the world, but she’d been waiting for that trip, so she booked her flight and her room on Montego Bay. When she went to apply for her first-ever passport, she told the lady behind the counter, “I’m going to die before I can use this again, so when I come home, can I get a partial refund?” After she told her story, she got quiet for a while. But later, Mom glanced over and saw the woman holding Taylor’s hand in hers. She looked up, and her eyes met Mom’s, and she told Mom she’d pray for her daughter.

The woman on the plane wore her Avon name tag for her first trip to the Caribbean; Mom told me she can picture it, but for the life of her, she can’t remember her name.

Fighting a monster like Batten disease day in and day out makes it easy to get caught up in your own problems. It makes it easy to miss the accidental moments and the unexpected angels.

But at the end of the day, aren’t those life’s most beautiful things?

Aren’t they all any of us can really hope to have – whether or not we’re facing a terminal disease?


The Last Birthday Girl

By Laura Edwards
The Last Birthday Girl in 1982

On Tuesday, I’ll celebrate my last-ever birthday.

Okay, so not really. But I’ll be 29, and since I don’t care to turn 30, I’ve decided that at the very least, March 1, 2011 will be the last time I officially recognize my new age.

Despite my disdain for the number 30, chances are good that I’ll celebrate many future birthdays. Over the years, I’ve dodged plenty of bullets. I got off to a rocky start, suffering a severe brain injury at birth. Soon after, I became the first of two of my parents’ three children to have brain surgery. Then, when I was five, I took a nasty fall from the top of a high dive and landed on my back on the concrete pool deck. Eleven years later, I got in the first of three major car accidents. I’m particularly lucky to have walked away from the second. And in 2009, I had a lymph node removed during a cancer scare.

All of those things are safely behind me now. I still have scars on my head and my stomach from the intracranial shunt I sported as an infant, but a lime sherbet Popsicle and a spell in the shade took care of the diving board incident. The cars involved in the accidents really took it on the chin, but every single time, I walked away shaken, and nothing more. Oh, and the offending lymph node? It was benign.

These days, my biggest health issue is the fact that I’m an orthopedic train wreck – something I brought on myself and conveniently ignore whenever I lace up my shoes and head out for a run on Charlotte’s finest asphalt. When I look in the mirror and see signs of my ice cream obsession and a head of hair that’s not quite as blonde as it used to be, I suddenly remember that I’m not seventeen anymore. But in that same mirror, I also see a girl who got a single good copy of the CLN1 gene. A girl who also got a bad copy, yes – but that copy’s nowhere to be found in the mirror. You see, in a fight between a good copy and a bad copy of CLN1, the good copy always wins. It’s only when you’re unlucky enough to get two bad copies that you have infantile Batten disease. And if that happens, chances are you won’t even be able to see your reflection in the mirror – or anything else. Those bad copies will have stolen your sight.

I’ve had my fun with this whole ‘last-ever birthday’ thing. Now, what I really want to do is thank God in advance for each and every last future birthday He decides to give me. Life is a gift, and I don’t take a single day for granted. I can’t. But I sure do have a hell of a chance at seeing tomorrow. My sister can’t say that. Because she got two bad copies. So if Taylor lives to celebrate her 30th birthday, it’ll be more of a miracle than anything in my life ever was. And if that day comes, I’ll give her one hell of a 30th birthday party.


The In Crowd

By Laura Edwards

We spent an awesome couple of days this past weekend at the new Great Wolf Lodge in Concord, just north of Charlotte. Thank you to the angels who made it possible for Taylor to make happy memories with her family at the resort.

The weekend marked the Great Wolf Lodge’s official grand opening celebration, complete with a Radio Disney banquet and intimate concert with Disney star Mitchel Musso of Hannah Montana fame in the lobby on Friday night. When the music started, most everyone else got up on their feet, but T remained seated on the floor. Every time I squatted down to talk to her during the show, she was lost – no – found – in her own private, happy little world of music. She chanted when the crowd chanted and clapped when they clapped and cheered when they cheered, but she experienced that hour in her own special way.

One of the songs Musso and his band performed was called “The In Crowd.” As the lyrics blared from the speakers stacked not more than two feet from where we stood and I took in the gobs of preteens and tweens and teens oogling the band members, I thought about how hard it must be for a girl T’s age to endure everything she has endured, from getting a rotten diagnosis to taking yucky meds to struggling with some subjects in school to going blind to traveling thousands of miles to have major (and experimental) brain surgery, losing her beautiful head of long blonde hair in the process. I think back to when I was in the fifth grade, like T, and remember how it was the year when it seemed as though an invisible switch was flipped, and the girls started puberty, had their first real crushes on boys and suddenly cared deeply about not so much what clothes they wore to school, but rather what others thought of them, and how all of those physical and social and emotional changes triggered what I call the ‘mean girls’ syndrome. I think, in one single moment, how compassionate people are and how cruel they can act. And then, I remember how T has faced each day – every wound, every setback, every laugh and every moment of great hope – with more grace and courage than I could ever dream of finding within myself. We have created such a complex system for how people are judged socially, and for what? We spend so much time examining other people for their faults that we often look right past their gifts.

The song served as a stark reminder of one of the many kinds of pain T has felt in her short life, but it was also a reminder of what makes her so special. Yes, she has Batten disease – but she’s also a 10-year-old girl who makes a note of Disney movie and CD release dates and who didn’t want to wash her hand after Mitchel Musso held it when it was her turn at the autograph session. She’s a girl who wants so badly just to be normal but who also isn’t afraid to walk – or dance – to her own beat.  And the moments we shared at the lodge – whether during the concert or on the slides at the indoor water park or on the mini golf course or in the arcade during our heated games of Skeeball and basketball and air hockey, were filled with her laughs and her smiles – and that, to me, is the grandest gift of all.