Sunday, February 27, 2011

The Last Birthday Girl

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. 11 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 orthopaedic train wreck - something I brought on myself and conveniently ignore whenever I lace up my Asics 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 17 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.

Sunday, February 20, 2011

Make the Future

"People are always blaming their circumstances for what they are.  I don't believe in circumstances.  The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can't find them, make them."  --George Bernard Shaw

'Incurable' is unacceptable.

Tuesday, February 15, 2011

Root Beer and Rameses

Yesterday marked the 12th Valentine's Day my husband and I have shared.  We're renovating our kitchen and hate going out on Valentine's, so he brought home a takeout feast from one of my favorite Italian restaurants and gave me a nice card.  I gave him a card and...root beer.  Four glass bottles of Stewart's root beer, actually. 

12 years ago, we were high school juniors and best friends.  Often on the days that I didn't have soccer practice right after school, we'd watch movies, play basketball on the elementary school's blacktop court or walk up to the grocery store, buy a four-pack of Stewart's root beer and drain all four on the sidewalk outside.  And we had a blast; it was the best fun $3.99 could buy.  I was dating someone else at the time.  Nevertheless, through all those empty glass bottles, I glimpsed the future and knew that I would marry John.

All it takes to make a happy memory is two people and time.

Something else special happened that year: my little sister was born.  And before she could crawl, she taught me that lesson all over again.  One of the first times I held her, she wrapped her tiny hand around my pinky finger and didn't let go, even after she drifted to sleep.  When she first started talking, she couldn't say my name, instead calling me 'Rar-rar.'  Later, as a toddler, she often marched around the house chanting this phrase at the top of her lungs.  Halfway through my senior year, T celebrated her second Christmas.  I'd gotten accepted to Carolina a month earlier over the Thanksgiving holiday, and waiting for me under the tree that Christmas morning was a stuffed Rameses that played the Carolina fight song when you squeezed his hoof/paw/whatever you call a fuzzy ram's foot.  Well, Taylor adopted Fuzzy Rameses as her frequent dance partner, and suddenly 'Rar-Rar' replaced ' Rah rah Carolina' in the song's lyrics.

I left for college eight months later.  A few weeks into my freshman year, I got an email from my mom - or so I thought.  When I opened it, I discovered that it was actually from T.

'Dear Rar Rar,' it said. 'I wanted to send you a message too!  Here goes!  (insert two lines' worth of randomly assorted letters of the alphabet here).'  I printed the email and stuck it to the corkboard on the wall in my dorm room.  I moved every year that I was in school, and that corkboard got tossed into cardboard boxes and car trunks many a time.  But when I packed the corkboard a few days before graduation, there was the email, a little worse for the wear but still capable of making me smile. Nearly seven years have passed since my graduation day, and I still have that email.

These days, I can't hold T quite the way I used to, because she weighs almost as much as I do.  Fuzzy Rameses lives on the bed in my guest room - the room I decorated with my sister in mind but that she has never slept in.  Rameses' batteries are long dead, but he's got a home under my roof for as long as he wants.  And T hasn't called me Rar Rar regularly in a long time.  When she talks - which isn't as often lately - she calls me Laura.  But one thing hasn't changed.

A few weeks ago, I watched T on a Saturday night so my parents could go to a party.  After dinner, we watched one of her girly girl movies.  Her favorite chair isn't big enough for both of us, so I sat on the floor in front of it and leaned back against her pretzeled legs.  10 minutes in, she found my pinky. 

Saturday, February 5, 2011

Opposites Attract

It's Saturday night, and my parents are out celebrating a friend's birthday, so Taylor and I are watching Ella Enchanted at their house. Right about the time the pizza I'd baked disappeared and I started the movie, my husband and brother fled to my house three miles down the road, allegedly to put up drywall in our kitchen (we're renovating) but more likely to avoid having to watch Ella Enchanted.

When I was 12, I wouldn't have watched a movie like Ella Enchanted even if you tied me down in the chair (I would have figured out a way to escape or, if my attempts failed, squeezed my eyes shut and stuck my fingers in my ears). When I was 12, I wore cutoff denim shorts and Charlotte Hornets t-shirts. My most prized possessions were my Legend of Zelda Nintendo game (my brother wasn't allowed to touch it) and the black and orange Nike cleats that matched my middle school soccer jersey. 17 years later, I'm still mostly that same girl. I like pedicures and expensive haircuts, but I'm still happiest in old jeans or Adidas pants and long-sleeved t-shirts or stretched-out Carolina sweatshirts. I still play video games and, when I'm not injured - which is rare lately - soccer. But my sister is a girly girl to the core. She likes sparkly jewelry and cute skirts and movies about princesses.

In spite of our differences, I love hanging out with my little sister. Even when she was still a toddler, I imagined going shopping or getting our nails done together or helping her plan her wedding.

I was only a month removed from my own wedding nearly five years ago when the Batten disease diagnosis tore my dreams into a million tiny little pieces. And now, though I still cling to my belief that we can find an answer to this monster in time for Taylor, I can't escape the disease, even when we're happiest together. Even tonight, as T listened to her movie and smiled, she dutifully swallowed each of the nine pills I put in her delicate little hand.

I hate this disease. I hate everything it represents. I hate it for all that it has stolen from us and for all that it will steal in the days to come. I hate it for threatening to steal my little sister from me. And yet somehow, through all that hate, I still find happiness in the most unusual places, like shared princess movie nights.

Over at my house, the guys have probably wrapped up in the kitchen, put the tools away and retreated to the great room to play Xbox and drink beer. I may be a video game and soccer-playing, old sweatshirt-wearing kind of girl watching a princess movie on a Saturday night with a 12-year-old dressed in pink pajamas and fuzzy pink socks, but I still think I got the better deal.