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What’s in the Box?
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
“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
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
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.
Finding My Wings
I snapped this photo with my phone near the very end of the 13.1-mile Thunder Road Half Marathon course this past Saturday morning. If it doesn’t strike you as special, take a closer look. The man in the blue shirt is running with a cane. He’s blind.
My friend Amy pointed this fellow out to me early on in the race, when the throng of runners still tightly packed the streets of uptown Charlotte. Seconds later, I lost him in the crowd.
Three thousand, two hundred thirty-one runners completed the 2010 Thunder Road Half Marathon, but for some reason, I crossed paths with the blind runner not once, but twice on our shared journey to the finish line. I can’t say the same about any other runner with any degree of certainty. I’m not the most superstitious person in the world. But I believe in divine intervention.
I believe I could have gone the full 26.2 Saturday based on energy alone. My heart and my lungs still felt good at mile 13. But by then, my feet and ankles had already been screaming for mercy for seven whole miles. Many times, my head told me to pull out. Injuries on top of injuries – and the accompanying pain – can do that. I forged on because I was running for Taylor. When I saw the blind man under the bridge, I knew she was right there with me. Shortly afterward, the finish line came into view. Taylor helped me find my wings, and I sprinted the rest of the way.
If I Have to Crawl
The cold, damp weather chased me indoors this morning for my Thunder Road Half Marathon training. I’m a fan of running in the cold, but not the rain. So I bundled up and headed to the YMCA, where I hit the 1/12-mile-long track with my heart set on completing 120 laps, or 10 miles.
The first mile felt good – nice and easy.
The second mile was better; my muscles were warm, I was into the heart of my playlist, and I coasted.
Near the end of the third mile, I thought about how if I was Taylor running one of her 5Ks, I’d be close to the finish line. When I’m running a race, I like to sprint the rest of the way as soon as the finish line comes into my field of vision. But Taylor never got a glimpse of the finish lines she crossed. She had to get her last burst of energy from somewhere else – somewhere deeper, somewhere purer.
Two laps into the fourth mile, an invisible demon struck a match inside my shoes, and the balls of my feet caught on fire. My Achilles whined. Everything else felt good, though. So I pushed on.
Partially to push my very real physical pain out of my mind, I thought about how if I was Taylor, I would be running in darkness. I was too scared to close my eyes on one of the turns, so I closed them for an instant on a straightaway. I felt the presence of other runners and walkers on the tiny track and knew that I would never be able to make it to the far end. I opened my eyes.
Seven laps later, I glanced down and discovered that the entire toe area of the shoe on my right foot was soaked with blood. I never stop in the middle of a mile, though. I had three laps left. Just a quarter of a mile.
As I rounded the third corner of lap 60, I sprinted the length of the last straightaway and right into a chair by the water fountains. I was only halfway through my 10-mile run. But I knew I was done.
I’ve been injury-prone since I was 15 years old. I’ve never gotten through a single soccer season without getting hurt. In my mid-20s, I made the inexplicable decision to turn myself into a distance runner. I never really thought about why until this very moment, right here. But I know instantly, without question, that I became a distance runner because of my sister.
In the months after Taylor’s diagnosis, I ran to get away from Batten disease. No matter what, running always felt better than crying. I still cried. But I ran more. And after I discovered that I just might have a say in how the story turned out, I ran harder than ever.
Blood-soaked shoes and all, I’ll never stop running. Next Saturday, December 11, I’ll cross the finish line of my second half marathon, even if I have to crawl. I could never let myself quit. That’s not Taylor’s style, and it’s not my style either. So, to bloody feet and weak ankles and Batten disease, I say bring it on. You may knock me down. But you’ll never knock me out.
I’m not only running for myself – I’m running to save Taylor’s life. Please consider supporting my efforts through Miles to a Miracle, a new campaign inspired by Taylor’s great courage on the race course and in life. Email me to learn how.
Things I’m Thankful for, Part III
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
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! 🙂
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