Throwback Thursday Dream

By Laura Edwards

#throwbackthursday may be the most popular hashtag game in the history of hashtags.

My extensive photo collection is the subject of lore among my family and close friends. There’s no telling how long hashtags will stick around, but I could play this game for a million Thursdays.

Taylor's school pictureNothing about Batten disease has been easy since my sister’s diagnosis in the summer of 2006. But I can’t find the words for 2014. I run for my sister because watching her run two 5Ks after losing her vision is the most inspiring thing I’ve ever witnessed. So it’s hard to fathom that she struggles to walk a few feet, even with a walker, and will soon be confined to her wheelchair. I can’t explain how it feels to know that Taylor will never talk to me again; sometimes, I think that’s the worst part. When I hold her hand, I hope she knows who I am. But I’m not sure.

If I could, I’d give up every last picture I have for one chance to go back in time, for just one day.

My sister talks and sings and laughs; she runs and skips and plays. She hums along to the beat of a song, and we talk about our day.

We share ice cream cones by the fountain in the muggy afternoon. She holds her own and licks the chocolate chip cookie dough, her favorite, from the sugar cone as it melts in the sun.

We walk to the park so I can push her in the swing. She tells me to push her higher, higher! She squeezes the chains and stretches her legs toward the sky.

We wind down in front of a movie on the sofa in the cool basement of my parents’ house. She snuggles close to me and watches the princess story, her bright eyes focused on the screen.

At night we lie side by side in the grass, our hands behind our heads. We count the stars and lightning bugs, and a little girl shares her dreams.

I Trust that He Understands

By Laura Edwards

What does Easter mean to you?

Easter walk

My sister can no longer walk without assistance, but together, we found beauty on this sun-drenched Easter Sunday.

Never a consistent churchgoer as an adult, I’ve had a complicated relationship with God since we learned my little sister has a fatal disease with no known treatment or cure the year I turned 24. Though I didn’t blame Him for the tragic flaw in Taylor’s genes, I couldn’t imagine going to church on Sundays. It just didn’t feel right to sing joyful hymns while Batten disease worked its silent dark magic.

I still don’t make it to church except for once in a blue moon. But though I don’t often put on my Sunday best and fight traffic to visit the stately church in uptown Charlotte where I was baptized, I talk to God every day. I pray more than I ever prayed in all of the years I participated in youth group and went to Sunday school and sang in the choir and rang handbells and dragged my feet as my family rushed to make it uptown for the 11 a.m. service. I talk to Him when I run for Taylor. I talk to Him when I find myself atop a high mountain ridge or deep in a glacier-carved canyon. I talk to Him late at night after my husband thinks I’m asleep, as I lie in bed and stare into the blackness and imagine what it would be like to be blind.

I used to ask God to let my sister live.

Now, I ask Him to give her happiness. I’m not sure what that means, and I think it means something different now than it did when I first asked for it. But I trust that He understands.

Easter celebrates God’s greatest miracle: the resurrection of Christ and eternal life, the gift we received as a result.

For me, Easter is also a celebration of life in the face of death; it’s a reminder that love conquers hate; it’s proof that even in the wake of the worst possible kind of heartbreak, the world is full of great beauty.

You only have to believe.

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.

Unnatural Order

By Laura Edwards

People die every day.

Three weeks ago, I read a eulogy inspired by a post on this blog at a memorial service for my grandmother, an angel in life who learned to fly on Christmas Day.

My grandmother’s cousin and close friend attended the service at the church that afternoon. Yesterday morning, her husband lost his battle with an aggressive brain tumor – the same kind of tumor that afflicts a main character in the novel I promised my grandmother I would finish one day.

When the azaleas bloomed in Charlotte last year, my husband and brother-in-law drove their father to New York to bury his mother – their last surviving grandparent.

My grandmother and I had a special relationship, and I will never stop missing her. But she was 41 years old when I came into this world. Though I never wanted her to get sick or pictured her that way until it actually happened, part of me always expected to outlive her.

Cancer is a horrible disease that can happen to anyone. But my grandmother’s cousin’s husband was not a young man.

My husband’s grandmother had five sons and many grandchildren.  She lived for 92 long years on this earth.

My little sister, Taylor, is 14.

Five-year-old Taylor seemed perfect – beautiful, intelligent, spunky. Healthy. The world was hers to conquer.

Six-year-old Taylor had some unexpected trouble with first grade math.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, Batten disease burst into our world and shattered it into a thousand little pieces.

Fourteen-year-old Taylor lives in a world that is always dark. She can’t learn like other kids. She has seizures. She loves to sing, but she can no longer talk except for a few words. Soon, she will be in a wheelchair.

Batten disease steals the lives of children.

Disney World

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

People often ask us why we bother with Taylor’s Tale – the non-profit organization we founded not long after Taylor’s diagnosis. They Googled Batten disease, or they know something about it from their relationship with us, and they wonder why we don’t just enjoy the time we have with her.

I do catch myself fighting too hard sometimes – I’ll realize that I’ve spent more time on my laptop than with the people I love in a given week – and when that happens, I know it’s time to pull back.

But we HAVE to fight. We know we can’t win every battle. We look at the fourteen-year-old Taylor and know that we likely won’t even win our own. But we hate Batten disease so much for what it’s done to my sister that we simply can’t sit back and let it win EVERYTHING. We know there are other children and families fighting their own battles and that there will be more in the future for as long as we don’t have a treatment.

We know Batten disease won’t quit.

If Taylor had a choice, she wouldn’t quit.

Neither will we.

What’s in a Picture?

By Laura Edwards

My little sister, Taylor, is blind. But her eyes – the color of a Milky Way candy bar and framed by long, feathery lashes – used to work just fine. Taylor, whose sassy but sweet disposition once helped her get the best of people twice her size, could tell you exactly what she wanted without saying a word – just by tilting her head and fixing those eyes on you (sometimes she’d cross her tiny arms across her chest for good measure).

I miss the sassy side of my sister, who these days is 100 percent sweet even though she has every right to be spitting mad at the world. I miss getting “the look.”

I’ll never forget the moment we first noticed something amiss with Taylor’s vision. We used to visit the North Carolina State Fair in Raleigh every October. One of the vendors served hush puppies (deep-fried cornmeal dumplings – a Southern favorite) in an old, dimly lit mill house at the fair. As we left the dark mill house licking our fingers in 2005, someone noticed that Taylor couldn’t find the stairs.

And so it began.

It took several years for Batten disease to steal all of the cells in my little sister’s eyes. First, she lost her night vision. Then, she lost her central vision. I still remember how, before Taylor went blind, she tilted her head in the direction of voices and other sounds so that she could see them out of the corner of one eye.

A few years after that day at the fair, we went out for ice cream following a day on the beach. As we walked by a shop that sells Christmas decorations year-round, Taylor made a remark about the Christmas lights in the shop window.

We exchanged anxious glances. My heart leaped into my throat.

Not long after that day, though, Taylor’s lights went out for good.

Eyes are powerful, expressive communication tools. But Taylor lost hers and so much more to Batten disease. My sister hasn’t made eye contact with me in five years. I miss looking into those Milky Way eyes and knowing they’re looking back into mine.

Now all I have to remind me of those moments is pictures. Lots and lots of pictures.

Taylor in the snow