Move Mountains

Published: January 23, 2011  ~   0
By Laura Edwards

My mom frequently shares nuggets of wisdom such as the one below with me via email.  I love getting these messages from her, particularly when I’m having a rough day. They serve as a reminder of what I’m fighting for and reassurance that I’m not fighting alone.

“I believe life is constantly testing us for our level of commitment, and life’s greatest rewards are reserved for those who demonstrate a neverending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams and those who live in regret.” — Anthony Robbins

I won’t ever give up.

New Taylor’s Tale Video!

Published: January 21, 2011  ~   0

What’s in the Box?

Published: January 12, 2011  ~   0
By Laura Edwards

My husband told me something profound tonight as I sat cross-legged on the floor of our home office, shuffling through pictures of a trip during which, three years ago this Saturday, January 15, we walked into a hospital thousands of miles from home and took a leap of faith – a leap that sadly never resulted in the miracle for which we hoped with all our hearts. On a day to day basis, he said I am weathering Taylor’s illness much better than in past years – that I am stronger, even though in some ways I am sadder. But Taylor has a degenerative disease, so the day-to-day is much more painful than ever before. That made me wonder, if my husband is right – if he knows me as well as I think he does – what changed in me to make it so.

Being that we are just a few short weeks removed from Christmas, I came up with a holiday-themed analogy to explain the change.

When Taylor was first diagnosed with Batten disease, I built myself up every single day, only to get completely torn down before the day was over. I was so focused on finding the one thing that would truly make it all better – for someone to tell me Taylor would live without lying to me – that I was miserable all of the time. It was as if each day was Christmas morning, and I tore the paper off the biggest gift box under the tree expecting it to be exactly what I asked for, only to realize it wasn’t that at all and be totally crushed as a result. It didn’t matter if the gift was nice. It didn’t make Batten disease disappear from our lives, so to me at least, it wasn’t nice at all.

I’ve been living with the knowledge that my sister has a fatal disease for more than sixteen hundred days. That’s a lot of Christmases and a lot of heartbreak, since not a single one of those gift boxes under the tree has ever had the miracle wrapped up inside. As time went on, I realized that I couldn’t always have exactly what I asked for. But while I never stopped wishing for the miracle, I learned to appreciate other things in those boxes – seeing a smile on my sister’s face, taking a long walk on a summer evening after the lightning bugs come out to play, hiking to the top of a canyon in Utah painted with a brush that could only have come from Heaven, being in the same room as the people I love. Those gifts enable my very survival. I know I might never receive the one gift I seek above all others, but that tragic, haunting realization can’t steal the other gifts away from me. They had my name on them, I opened them, and they’re mine.

We dismantled our ‘real’ fake Christmas tree over a week ago. But first thing tomorrow morning, I’ll unwrap another gift. I don’t know what I’ll find inside, but that’s the beauty of life – the unknown and the dreams that guide us. And who knows? Someday, I might just unwrap that miracle.

Faith

Published: January 7, 2011  ~   0
By Laura Edwards

“Faith is the strength by which a shattered world shall emerge into the light.”

-Helen Keller

Love to the friend who gave me these words and to all those who walk beside me in my search for the light. 

Imagine

Published: January 4, 2011  ~   0
By Laura Edwards

Thanks to Jennifer VanHoutan, the mother of two children with late infantile Batten disease, for letting me share the following:

***

Imagine your child tripping over his feet and eventually not being able to walk. Imagine 15 months of your child regressing and no answers as to why?

Imagine seeing over 100 seizures in 2-1/2 years.

Imagine your child swimming one summer but the next summer he is expressionless when you take him into the pool.

Imagine your child being able to play tee-ball and now can no longer hold a ball or bat.

Imagine your child not being able to hug you or say “I love you” anymore.

Imagine your child having no known friends he/she talk about.

Imagine your child never being invited to a classmates birthday party.

Imagine your child singing the “ABCs” and can no longer speak a word.

Imagine your children taking 58 medicines a day.

Imagine your 6 year old having the mind of a 4 month old.

Imagine having only 25% chance per child to pass on a defected gene and it happening to 2 out of 3 of your children.

Imagine something so rare the chances of winning the lottery are better.

Imagine all day your 6 year old needing 100% support and supervision.

Imagine a disease that takes away a childhood and then the child.

Imagine no cure….yet.

As you know, we don’t have to imagine this – this is our reality. As it is for many other families we’ve met during the last 2 years. Our goal today, and for the rest of our lives, is to bring awareness and raise funds to support research for a treatment for a cure. Noah hit every milestone on time until he was 3 and he was a bright kid. Laine still talks, but her speech is regressing and her gait is widening. Emily has a sharp reality as to what is happening to her siblings….can you imagine?

***

It’s impossible to put a value on the life of even a single child. So while Batten disease is rare, believe this: no child or family should have to face its unimaginable horrors. We can ignore Batten disease, but at what price? Is Noah’s life not worth fighting for? Or Laine’s? Or Taylor’s?

Batten disease changed my life, and I know what it does to children and families in the worst possible way. It’s dragged me to hell and back.

Yes, Batten disease is rare. But look at it this way: there are hundreds of children currently living in the United States alone who will die of some form of Batten disease unless a cure is found first. And that’s not to mention all of the children living across the rest of the world today or, for that matter, the children who haven’t even been born yet, many of whose parents are walking around without the slightest idea that they carry the gene responsible for Batten disease. Like my parents, they won’t find out until they watch their son or daughter experience unexplained deterioration and go on to receive a wrong diagnosis or two or three before finally arriving at the catastrophic conclusion that their child is destined to die young, all because of a mutation on a single gene from out of the thousands upon thousands of genes that make up a human being.

Batten disease is simply too tragic too ignore. In July 2006, my family asked friends for one thing: to believe in miracles. In the beginning, we asked people to believe for Taylor’s sake. Today, I’m asking you to believe for Taylor, but also for Noah, and Laine, and all of the others whose lives are on a cursed ticking clock.

From the Rafters

Published: December 22, 2010  ~   0
By Laura Edwards

Mom, Taylor, and I made our annual trip uptown to see The Nutcracker at Charlotte’s Blumenthal Performing Arts Center on Sunday night.

For me, Christmas wouldn’t be whole without these two precious hours spent with my two favorite girls. We were up in the rafters this time around, but none of us cared. Taylor, of course, goes solely for the music. I love the ballet, but I go mostly because almost nothing makes me happier than seeing my mom and my little sister smile. I’m not quite sure how many times I’ve seen The Nutcracker, but that will never get old.

I cry very little these days; sometimes, I wonder if my tear ducts haven’t all but dried out thanks to the events of the past four-plus years. But at the zenith of my favorite part of the ballet, “Pas De Deux” (the dance of the sugar plum fairy and her prince near the end of Act II), I glanced over at my mom, and I lost it.

Only God knows how many more times the three of us will be able to go to The Nutcracker together. Our next chance is a year away, and I can’t take anything that far out for granted. I can’t take next month, next week, or tomorrow for granted. To be fair, none of us can. But Batten disease changes the game. The curse that is Batten disease makes each day my family is still whole even more of a blessing. The present is fleeting. But those two wonderful hours in the Blumenthal rafters with my girls will live on in my heart forever.

Things I’m Thankful for, Part III

Published: November 25, 2010  ~   0
By Laura Edwards

I’m feeling bad that I didn’t post an entry for this series last night. John and I went to see a movie and afterward stayed up late making a pumpkin spice roll for Thanksgiving dessert, and it totally slipped my mind. So, technically I need to post twice today to make up for yesterday. However, I’m going to let myself off the hook just this once, because I’m anxious to get over to my parents’ house and still have a ham to cook. I also ran the Charlotte SouthPark Turkey Trot 8K with my brother, Stephen, this morning in Taylor’s honor and am badly in need of a shower.

So with that said, I think that today, I’m most thankful for my family and that God gave me this day to enjoy with them. I’m thankful that I have the most wonderful husband in the world who is also my best friend, the best parents – who have made so many sacrifices for me and have given me so much – the best brother and sister a girl could ask for, and grandparents with whom I’ve made more happy memories than I could ever begin to count. I’m thankful for all of the other relatives and friends I will not see today. I’m thankful that I am, for the most part, healthy and have the strength and the will to fight for my sister’s life. I’m thankful for the moments when my heart is filled with hope. In those moments, a small part of me believes that I will spend many more Thanksgivings with Taylor. And in those moments, I gather enough strength to go on for another day.

Happy Thanksgiving, and much love to all of my family and friends and everyone who continues to stick with us for the fight against Batten disease!

Things I’m Thankful for, Part II

Published: November 24, 2010  ~   0
By Laura Edwards
Tonight, I’m thankful for video games. Yes – you read that correctly. An homage to Nintendo doesn’t feel very poetic or grand, but in my world, video games mean that I’ve accomplished necessary tasks to the extent that I don’t feel (very) guilty about flipping my own switch to the ‘off’ position and doing something mindless for awhile. In my world, mindless is healthy, because often, my brain and my heart are so twisted over certain cards we were dealt that stress becomes physically exhausting – even damaging. I try really, really hard to hide the signs, but people close to me know how to spot them.
Sometimes in college, after I’d had a rough day, I’d flop on the vinyl couch in the apartment I shared with three other girls and play Donkey Kong 64 until my roommates had come home from class and gone out and come back home again. Last winter, when I stayed home from work sick with a sinus infection, I played Super Mario Galaxy for nine hours and seven minutes. I know this because the game documents such stretches of lost time. And tonight, to celebrate the beginning of a long holiday weekend, I’m rescuing John from our garage (where he has been painting siding since he got home from the office) so I can beat him at Wii Sports Resort before he annihilates me at Golden Eye.

Taylor plays video games sometimes. She’s pretty good at bowling on Wii Sports if you get her lined up just right and help her with her wrist motion the first couple of frames. And she does a mean hula hoop on Wii Fit. Unlike her big sister, though, T prefers to unwind with her music. Put her in a room with a stack of CDs and her CD player or her iPod, and she’ll entertain herself for hours on end. She used to sing all of the words to the songs. These days, she doesn’t sing the words very often. Instead, she picks out certain notes and hangs on them forever, like a miniature opera singer. She’s (almost) always in key. Sometimes we have to remind T not to do this – at least not so loudly – when we’re in a public place. But part of me hates to take it away from her.  Pictures mean nothing to her now. Music is everything.

Here’s to all of the mindless activities ever invented for the escapement and enjoyment of the mind and the soul. And here’s to the next few hours in front of my TV. Wish me luck! 🙂

Things I’m Thankful For, Part I

Published: November 23, 2010  ~   0
By Laura Edwards

In honor of the upcoming Thanksgiving holiday, I’ve decided to pen a new entry on each of the next four days, with each post dedicated to something for which I’m thankful.

Tonight, I’m thankful for my ability to see. I’m blessed to possess two eyes that, with the assistance of contact lenses or thick glasses, receive reflected light and usher it through first the cornea, then the pupil, then the lens, and then the retina, where, finally, it is converted into electrical impulses and sent to my brain, where an image is produced. This is an amazing process that took nearly three full lines to describe but that in reality happens instantaneously and without requiring any thought or effort on my part. Since I was 9 years old, I’ve had a hard time climbing out of bed in the morning without first putting my glasses on, but once I do that, the world is crystal-clear.

I’m thankful for all of the visual memories that will forever remain preserved in my heart. This very instant, I can see the way the sunlight trickled through the leaves of a certain tree whose canopy watches over a sidewalk that runs alongside the Undergraduate Library on the campus of the University of North Carolina. I used to take that sidewalk to South Campus just so I could walk through that dappled light. Now, I can see the fountain at SouthPark Mall in my hometown, as well as the thousands of pennies slumbering under the water’s surface, and my dad’s face as he tells me, his only child, a story, and the scoop of mint chocolate chip ice cream perched atop a sugar cone from the Baskin Robbins, the closing of which left me in tears. (I immortalized that particular memory in the novel I never finished once the doctors discovered the terrible truth about my sister’s genes.) Now, I can see my great-grandmother’s laugh – because she laughed with her eyes – as she watches a funny movie with me in her basement, an ice-cold can of “Co-cola” in her hand and an unfinished game of Chinese checkers on the coffee table. Now, I can see my husband’s face as he asks me to marry him on the sidewalk in front of my grandparents’ house in Wake Forest, North Carolina, where we spent our first wonderful long weekend together as best friends just three days before he asked me out (not the first time he asked, but the first time I said “yes”) during the first semester of our senior year of high school. Now, I can see my little sister’s beautiful, working eyes focus on me as she runs to give me a hug.

I graduated from college in the spring of 2004, and that tree beside the library is no longer a regular part of my life. The SouthPark Baskin Robbins is so long-gone that most people living in Charlotte these days probably don’t even know that it ever existed. My great-grandmother passed away a few years ago, and I never got to tell her goodbye. My husband and I are still as in love as we were on our wedding day, but my grandmother is very sick, and the house where John asked me to marry him was sold two months ago. And my sister has not made eye contact with me in a very long time, because Batten disease came along and decided that she doesn’t deserve to see. So I cherish photos I took of her more than a few years ago – the ones in which she is looking at the camera. And more than ever, I cherish each and every moment spent with my blind sister. I cherish the miracle that is her presence in my life, and I hate the disease that wags its finger at me every day, tells me to stop fighting back, and tells me I should be satisfied with the memories I already have and stop dreaming of making more.