Growing up, I thought I had the meanest mother in the world.
My friends' mothers did most of the work on their science fair projects, but I had to do almost all of the work on mine. One year, I tested different brands of store-bought popcorn for their popping prowess. On a gorgeous Saturday afternoon, my mother made me sit at the kitchen table counting hundreds of popped and unpopped kernels while my friends played outside.
In elementary and middle school, I hated wearing dresses and got nervous around boys, but my sixth grade year, my mother forced me to participate in Teen Cotillion. On Wednesday nights, instead of building forts in the woods or going to Charlotte Hornets games with my dad, I had to put on a skirt and go to a middle school gym to learn how to do the waltz and the shag and the electric slide and hold hands with boys.
For more than a decade, my mother dragged me to piano lessons once a week, and the other six days, she made me practice for at least 45 minutes, setting the timer on the oven so I couldn't cheat. While other kids got to play fun music from movie soundtracks and chart-topping albums, I had to play the classics. And while lots of kids got away with just playing in the annual recital, I had to play in all of the competitions, too. I got a 'superior,' the best score, every single competition in every single year - all but one. That time, I got an 'excellent,' the second best score, and on the way home, my mother told me I didn't play to my potential.
Some of my friends bought pizza in the school cafeteria five days a week, but my mother sent me to school with thermoses of chicken noodle soup and apple slices and peanut butter sandwiches with the crust still attached.
A lot of my friends' rooms looked like war zones, but my mother made me clean my room and took away privileges if I didn't. She used to follow me around with the vacuum cleaner and got mad when I wore my muddy soccer cleats into the kitchen.
Most of my high school friends had midnight (or later) curfews, but my mother forced me to be home by 10:30. During my sophomore year, on the night before I turned 16, I went to the senior follies production at school with my junior and senior friends, and one of them insisted that we celebrate my birthday at midnight. I walked in the door of my house at 12:25, almost two hours after curfew. My mother grounded me.
None of my friends' parents pressured them about their grades like my mother pressured me. The first semester of my freshman year of high school, I got my first-ever 'C,' in English. My teacher told my parents that I got the 'C' because I didn't apply myself, so my mother took away my Cliffs Notes, threatened to hire a tutor and insisted on reading my take-home papers before I turned them in. I never got another 'C' again; that spring, I took the state writing test and got the highest score in the school, and seven years later, I graduated from college with an English degree.
Many of my soccer teammates' moms came to every single game - even the weekend-long tournaments out of the state - and waited in the parking lot after practice so they could yell at the coaches about their daughter's playing time. My mother never came to practice, never yelled at my coaches and never even came to many games. She was too busy being president of the Junior League or serving on some other board to give kids with handicaps or from less fortunate families a chance to believe. And while my teammates' mothers helped them research college soccer programs and athletic scholarship opportunities, my mother told me to go to the best school, even if I had to walk on the team or, worse yet, never got a chance to play on the varsity.
When I became extremely homesick at the beginning of my freshman year of college, my mother wouldn't let me move home to go to the school my boyfriend attended. She told me that if I didn't like my school, I could go somewhere else, but I couldn't come home.
When I told my mother my boyfriend and I wanted to spend the summer after my graduation driving across the country, she told me no. Instead, she made me get a PR internship at a local ad agency while I figured out what I wanted to do with my life, since my original plan to be a starving artist didn't solve the issue of getting me off my parents' payroll. That internship led to the career I have today. And when I wanted to get married after I earned my undergrad degree but before my husband finished his, she convinced me to wait until he was halfway through grad school.
Finally, after years of waiting, my wedding day was the happiest of my life. That day, I stood in front of 75 of our closest family and friends and toasted my father and my mother for giving me everything a daughter ever could ask for.
Since that day, I've seen my mother torn apart by the disease that shattered our family the same day we learned of its existence for the first time - just one month after my wedding. I've watched her fight for my sister, Taylor, like her own life depended on it - and maybe it does. I've watched her demand the best of the people who have a chance to give kids with Batten disease a future, just like she used to demand the best out of me. I've seen her at her most desperate, and in those moments, I've tried (often in vain) to be the rock for her that she's always been for me - even though I used to be too naive to see it.
I love my sister, but I'm not only fighting for her. I'm fighting for my mother - the greatest mother in the world. Because that's what she always did for me.
Mother's Day isn't until two weeks from Sunday, but my mother deserves to be honored 365 days a year. Happy Mother's Day, Mom. I love you!
Friday, April 22, 2011
Monday, April 11, 2011
Digging Deep
| I managed this self-portrait before dawn the morning of the race. |
Time: 1:25:27
Pace: 8:35/mile
Laurel Hill time: 7:35
Place: 734 out of 2,189 overall; 267 out of 1,252 females; 60 out of 200 females ages 25-29
I began the race on Stadium Dr. with a nasty head cold, an injured Achilles (pulled in a soccer game two days prior) and maybe an hour of sleep (worried I'd sleep through my 5 a.m. alarm, I never quite made it to dreamland).
Around mile marker 2, I felt a burning sensation in the ball of my left foot. It never went away, forcing me to change the way I run (more naturally a sprinter than a distance runner, I run entire road races on my toes). Hours later, I'd discover the source of the pain - an enormous blood blister.
Near mile marker 5, the pain in my Achilles relented, blissfully replaced by a runner's high.
A few miles later, I called my parents from the course just to check in. Their voices gave me the boost I'd need just moments later.
Soon after we said goodbye, I reached Laurel Hill - the most difficult part of the race, featuring a 200-foot vertical climb over the course of a mile. By then, my lack of sleep had caught up with me. But when I crossed the first timing mat, I pushed myself, getting as close to a sprint as my body permitted. Each time my ruined feet hit the pavement, I heard my little sister's laugh, and I dug deeper. I crossed the second timing mat at the top of Laurel Hill 7 minutes and 35 seconds after crossing the first - meaning I'd run the most challenging mile a minute faster than my average mile pace.
Soon afterward, I heard the music at the finish line as I rounded a bend. And when I reached the final straightaway, as in every race, I pulled out one more sprint for "T."
I ran the 2011 Tar Heel 10 Miler 12 minutes faster than in 2010, so tonight, true to my word, I'll make a $60 donation to our Miles to a Miracle campaign. But more importantly, I'll never stop running. In fact, I got back out on the track tonight, ready to tackle the next race for Taylor. Laurel Hill has nothing on the mountain we have yet to climb. But I believe.
Please consider making a gift of your own to help Taylor's Tale cross the finish line of the ultimate race: the race to save the lives of children like my little sister. Give Now
Labels:
Chapel Hill,
Laurel Hill,
Tar Heel 10 Miler
Wednesday, April 6, 2011
Still Standing
It's been one of those weeks for me. They come along every once in awhile. My tears are threatening an uprising.
I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. One early evening I started crying without warning as I stood at my kitchen counter making macaroni and cheese, listening to music and watching the sun tuck into the clouds behind the trees in my backyard. I sank down to the floor and stayed there with my back against the dishwasher and my bare feet on the cold tile floor as hot tears soaked my shirt and my shoulders shook. I didn't know what made me cry at that moment, and I didn't know how to stop. So I just cried until I didn't have any tears left.
After a 5K fundraiser one cool, rainy Saturday morning the following spring, I held the hand of a boy with juvenile Batten for 30 minutes. I knew Seth wouldn't have seen my tears, but I still held them in until after I'd walked away. And as soon as I did, that was it for me. I took my mom by the arm, and we found my car and drove home. I climbed the stairs to my bonus room, closed the blinds and slept on the couch for five solid hours. And I NEVER sleep during the day.
Somewhere along the way, my life before Batten disease (B.B.D.) dropped out of sight in the rear-view mirror. I cried less and less. Mostly I stayed angry. I'm still angry, which is good in a way because it makes me want to fight like hell. Sadness doesn't get me anywhere. Lately I'm feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide.
Mostly, it's working. I cry very little, but when I do - it's epic.
I don't know where I am or how I got here. If you've lived my story, you understand the source of my doubts.
Originally this line said that I don't know how I'm still standing, but I deleted it. Because I DO know.
I'm standing because of my family. Tragedy generally does one of two things to relationships: tear them apart or super-glue them together. Tragedy sucks, but it's still been my super-glue. I love being in the same room as the people I love, and I'd walk through fire for them.
I'm standing because of the amazing human beings I've met since being thrust into the world of Batten disease. My hero at the moment is Noah Coughlan, who's running across the nation for children like Taylor - almost 2,500 miles in just over four months. I'm truly honored that Noah's offered to share the pavement with me when he reaches Florida in July.
I'm standing because of my sister - my hero for the ages. She has the most evil, unfathomable disease on the face of the earth; it belongs in hell. She can't see, and she can't always say what she's thinking. But today she gave an awesome presentation on Moby Dick. Tonight she helped me push our cart through the grocery store - while singing a Bee Gees song. And for the first time all day, I really laughed.
Most of all, I'm standing because of faith. This past Christmas, a dear friend gave me a necklace with these words:
"FAITH is the strength by which a shattered world shall emerge into the light." - Helen Keller
With the passing of each day, Taylor's survival falls somewhere farther away from logic. But as long as I'm surrounded by angels, I'll believe.
I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. One early evening I started crying without warning as I stood at my kitchen counter making macaroni and cheese, listening to music and watching the sun tuck into the clouds behind the trees in my backyard. I sank down to the floor and stayed there with my back against the dishwasher and my bare feet on the cold tile floor as hot tears soaked my shirt and my shoulders shook. I didn't know what made me cry at that moment, and I didn't know how to stop. So I just cried until I didn't have any tears left.
After a 5K fundraiser one cool, rainy Saturday morning the following spring, I held the hand of a boy with juvenile Batten for 30 minutes. I knew Seth wouldn't have seen my tears, but I still held them in until after I'd walked away. And as soon as I did, that was it for me. I took my mom by the arm, and we found my car and drove home. I climbed the stairs to my bonus room, closed the blinds and slept on the couch for five solid hours. And I NEVER sleep during the day.
Somewhere along the way, my life before Batten disease (B.B.D.) dropped out of sight in the rear-view mirror. I cried less and less. Mostly I stayed angry. I'm still angry, which is good in a way because it makes me want to fight like hell. Sadness doesn't get me anywhere. Lately I'm feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide.
Mostly, it's working. I cry very little, but when I do - it's epic.
I don't know where I am or how I got here. If you've lived my story, you understand the source of my doubts.
Originally this line said that I don't know how I'm still standing, but I deleted it. Because I DO know.
I'm standing because of my family. Tragedy generally does one of two things to relationships: tear them apart or super-glue them together. Tragedy sucks, but it's still been my super-glue. I love being in the same room as the people I love, and I'd walk through fire for them.
I'm standing because of the amazing human beings I've met since being thrust into the world of Batten disease. My hero at the moment is Noah Coughlan, who's running across the nation for children like Taylor - almost 2,500 miles in just over four months. I'm truly honored that Noah's offered to share the pavement with me when he reaches Florida in July.
I'm standing because of my sister - my hero for the ages. She has the most evil, unfathomable disease on the face of the earth; it belongs in hell. She can't see, and she can't always say what she's thinking. But today she gave an awesome presentation on Moby Dick. Tonight she helped me push our cart through the grocery store - while singing a Bee Gees song. And for the first time all day, I really laughed.
Most of all, I'm standing because of faith. This past Christmas, a dear friend gave me a necklace with these words:
"FAITH is the strength by which a shattered world shall emerge into the light." - Helen Keller
With the passing of each day, Taylor's survival falls somewhere farther away from logic. But as long as I'm surrounded by angels, I'll believe.
Monday, March 21, 2011
Laurel Hill
Two weeks from Saturday, I'll run my favorite race, the Tar Heel 10 Miler, on the streets of Chapel Hill, N.C. and the gorgeous campus of the University of North Carolina.
I'll pass mile marker 1 on the L-shaped road I used to take to UNC basketball games at the "Dean Dome" and soccer practice before they turned our old field into a parking lot.
Around mile marker 5, I'll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater's grass-carpeted floor.
Near the very end of the race, I'll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It's the most difficult part of the race - so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.
Laurel Hill isn't easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I'll cross the finish line.
This will be the third race I've run for Taylor since Thanksgiving, but this time, I'll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by more than 20 minutes. Granted, south Charlotte doesn't have a Laurel Hill. But I'm almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.
To honor my little sister's valiant fight against Batten disease, I'm pledging $5 for every minute under my 2010 time. I'm also asking friends to give anything they can in support of my run. I'll post my race result here on Sunday, April 10.
To donate, visit www.taylorstale.com/miles and click on the 'Donate' button in the sidebar.
I'm incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we'll never stop fighting - or running.
I'll pass mile marker 1 on the L-shaped road I used to take to UNC basketball games at the "Dean Dome" and soccer practice before they turned our old field into a parking lot.
Around mile marker 5, I'll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater's grass-carpeted floor.
Near the very end of the race, I'll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It's the most difficult part of the race - so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.
Laurel Hill isn't easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I'll cross the finish line.
This will be the third race I've run for Taylor since Thanksgiving, but this time, I'll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by more than 20 minutes. Granted, south Charlotte doesn't have a Laurel Hill. But I'm almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.
To honor my little sister's valiant fight against Batten disease, I'm pledging $5 for every minute under my 2010 time. I'm also asking friends to give anything they can in support of my run. I'll post my race result here on Sunday, April 10.
To donate, visit www.taylorstale.com/miles and click on the 'Donate' button in the sidebar.
I'm incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we'll never stop fighting - or running.
Saturday, March 12, 2011
mir*a*cle
mir*a*cle - noun. 1: an extraordinary event manifesting divine intervention in human affairs / 2: an extremely outstanding or unusual event, thing, or accomplishment
On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I'd never met walked up to me, squeezed my arm, looked right into my eyes and asked the question that forever looms in our anxious hearts: "Is she going to be okay?"
She is my sister, Taylor, who at that moment sat less than 10 feet behind me at our family's table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman's searching eyes, I offered only the following: "We still believe in miracles."
I dodged the woman's question, I know - but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor's survival more clearly defies all logic.
When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.
If my sister should beat this disease - that will be a miracle, and when it happens, I will fall to my knees, look up at the sky and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.
I'm still waiting for that miracle. But I've witnessed other miracles along the way.
Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every 'normal' experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, 'Will she be able to handle it?' and 'Will this be her last one?'
As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor's hand and lead her onto the dance floor if no one else would.
But my fears were unnecessary.
True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form - an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.
On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I'd never met walked up to me, squeezed my arm, looked right into my eyes and asked the question that forever looms in our anxious hearts: "Is she going to be okay?"
She is my sister, Taylor, who at that moment sat less than 10 feet behind me at our family's table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman's searching eyes, I offered only the following: "We still believe in miracles."
I dodged the woman's question, I know - but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor's survival more clearly defies all logic.
When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.
If my sister should beat this disease - that will be a miracle, and when it happens, I will fall to my knees, look up at the sky and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.
I'm still waiting for that miracle. But I've witnessed other miracles along the way.
Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every 'normal' experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, 'Will she be able to handle it?' and 'Will this be her last one?'
As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor's hand and lead her onto the dance floor if no one else would.
But my fears were unnecessary.
True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form - an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.
Sunday, February 27, 2011
The Last Birthday Girl
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| The Last Birthday Girl in 1982 |
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.
Labels:
30,
birthday,
brain surgery,
CLN1,
high dive,
infantile Batten disease
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.
'Incurable' is unacceptable.
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