Miracles Come in All Shapes and Sizes

By Laura Edwards

At some point, most of us have children; though I haven’t arrived there yet, I will. We dream big dreams for our sons and daughters. We expect that they will be born healthy. We don’t expect that their lives will be perfect; we assume that they will get nasty colds and strep throat, bruises and scrapes, and even a few broken bones. We expect that they will be smart and do well in school but that we may have to give them a nudge every once in awhile to remind them to give it their all. We expect that they will grow up to be healthy and strong and fill their lives with whatever it is that will make them happy and make us proud.

But life doesn’t always work that way.

In 2008, a friend and his wife celebrated the birth of their first child, a beautiful boy. Their celebration was interrupted, however, when doctors at the hospital discovered that their son had the very worst congenital heart defect – hypoplastic left heart syndrome. And so, instead of taking their son home, they said goodbye to him as a team put him into a contraption that looked like an infant-sized spaceship and sent him to another hospital in Atlanta – four hours away – that specialized in caring for children with hypoplastic left heart syndrome. Then, they climbed into their car, pointed it south and followed their son’s spaceship to Atlanta, not knowing what awaited them upon their arrival later that night or in their future as a family. Their newborn son had the first of three major heart surgeries during that first stay in Atlanta. Today, he’s a true miracle: a bright, energetic kid with half a heart and a whole lot of love. His future – just like yours – is still unknown. But his present is worth living for.

Thirty-one years ago, a slender 24-year-old gave birth to a nine-pound, four-ounce baby. During the delivery, the baby suffered a severe brain injury. No one knew that at the time, though; it wasn’t until later that the mother noticed that something wasn’t quite “right” about the baby. Then, the seizures started. Before long, a neurosurgeon operated on the baby to place an intracranial shunt. The baby would likely have the shunt for the rest of her life, he said. But the baby caught a staph infection, and the surgeon had to remove the shunt. And for reasons that are still not understood to this day, the baby got better.

That baby was me. I never had to have another shunt, and I never had another seizure. I still have chronic migraines, but I earned good grades in school and had success as an athlete. The neurosurgeon who saved my life still calls me the “miracle baby.”

In 1998, my mom had her third child – my sister. We joked about the easy delivery and recovery. Taylor, the picture of perfect health, came home within days of her birth. Mom – the quintessential overachiever – went back to work the next week. Within months, my sister had the world wrapped around her little finger. By age 3, she could read. She was whip-smart, beautiful and spunky. She was anything but a child with a fatal disease.

And yet…that’s what she had.

In July 2006, our world came crashing down. A geneticist confirmed that a problem with a particular gene out of the 20,000 to 30,000 genes in my sister’s DNA gave her infantile Batten disease.

In the near-seven years since we learned about my “perfect” little sister’s cruel fate, we’ve learned the meaning of small victories – like hearing Taylor laugh or, in more recent months, hearing her speak.

We’ve learned the meaning of living life day by day, rather than year by year…because we can’t count on next year.

We’ve learned to live for small miracles – such as my sister’s 5K race finishes or the true friends who’ve never left her side.

We’ve learned that nothing in life can be taken for granted.

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.

Cheating Death

By Laura Edwards

I’ve cheated death more than once.

I suffered an injury at birth and got the gift of an intracranial shunt. Doctors told my dazed first-time parents – both younger at the time than I am today – that I’d be severely handicapped if I pulled through. I was in the hospital for a long time. Then, I got a staph infection. The shunt had to come out. And then – miraculously and still without any logical explanation nearly 30 years later, I got better. I no longer needed the shunt. I was healed. Today, all that remains is a small lump on the back of my skull, a tiny white scar on my belly, and, occasionally, a headache so severe that I’m almost driven to put an end to my misery.

Less than three years after I kissed my shunt goodbye, I cheated death again. I was in the basement of my grandparents’ house, where my grandfather kept a pinball machine and two classic arcade games that towered over me at the time. I don’t remember any of what happened, but as the story goes, I dragged a chair over to one of the arcade games, presumably to play, and knocked over a can of gasoline that my grandfather had brought into his house for some unfathomable reason. The fumes from the gasoline ran across the floor and straight to the furnace, where they ignited. My uncle was cooking steaks on the grill outside when he realized the house was on fire, ran inside, scooped me up and ran back out. The entire lower level of the house had to be rebuilt, but I came out of the incident unscathed, despite the fact that I had been mere feet away from the furnace when it burst into flames. The other notable survivor of the fire? My mother’s wedding dress, hermetically sealed inside a cardboard box in – you guessed it – the basement. The same dress I wore on my own wedding day four years ago.

Fast-forward another two years. Mom and her best friend took me to a pool with a high dive on a hot summer day. I was maybe 5 and had never been on a high dive before. I made the trek from our lounge chairs alone and climbed the huge ladder. When I reached the top rung, I called out to Mom and her friend on the opposite end of the pool. I hadn’t asked for permission to try out the high dive but figured that at that point, it was too late for anyone to stop me. I swayed back and forth as I raised my voice louder and louder to get Mom’s attention. The wet railings slipped through my tiny clenched fingers. As I fell backward into nothingness, time stood still, and I actually saw my mom’s visor fly off her head as she came towards me in a full sprint. Then, without warning, I hit the concrete back-first with a thwack! I could have broken my back or my neck or cracked my skull into a million little pieces. Instead, I just had the wind knocked out of me. After a few minutes, the lifeguard walked me over to a shaded table near the concession stand and brought me a lime sherbet Popsicle shaped like a frog and with gumballs for eyes. By the time I’d licked the Popsicle stick clean, I’d made a full recovery.

When I was 20, I drove from Chapel Hill to Clemson, South Carolina for a weekend-long soccer tournament. We played five or six games – I can’t remember for sure – in a 36-hour span. By Sunday night, I was drained. I wasn’t sure I’d be able to make it all the way back to Chapel Hill, so I stopped at John’s apartment at UNC-Charlotte, walked inside, and promptly went to sleep. The next day, Monday, my first class of the day was a creative writing class at 3:30. I slept in and left John’s apartment around noon, leaving plenty of time to get back for the class. It was sunny and warm for October. At 1:47 p.m., on a dangerous stretch of highway less than 60 miles from Chapel Hill, I veered off the road to the left and barreled into a speed limit sign in the middle of an enormous grassy median going around 65 miles per hour. The highway patrolman estimated I was asleep for about a quarter of a mile. If I hadn’t hit that speed limit sign, I wouldn’t have been jarred awake, and I would have likely continued veering off to the left and into oncoming traffic on another highway. I’m not a betting person, but I’m willing to bet my Honda Civic wouldn’t have fared too well, and I’d have fared even worse.

I’m feeling pretty lucky at the moment, and I haven’t even mentioned a few other exciting car accidents, or last year’s brief cancer scare, or my bad copy of the gene that causes infantile Batten disease – paired with my good copy, the difference between being a carrier and a victim, like my sister. My sister, Taylor, whose birth and infancy were all smooth sailing, who didn’t accidentally set her grandparents’ house on fire, who never plummeted from the top of a high dive or fell asleep at the wheel but who, unlike me, got two bad copies of the Batten disease gene. I’ve been granted my fair share of new leases on life, and every morning when I wake up, whether or not I’m looking forward to the particulars of my day, I’m just thankful for the day. And for as long as God thinks I should be here, I’ll keep fighting for Taylor – to help her cheat death, just this one time.