I am beyond thrilled to share this super Smarty Mom, Laura, with you all. She is a local treasure who has brought awareness for Batten disease in honor of her sister, Taylor. She is an expecting Smarty Mom who shares her insights on pregnancy and what she’s looking forward to as well as what is a bitty frightening. I am positive that you all will love her! Let’s get to know Laura!
Name: Laura King Edwards
Husband’s name: John Edwards
Children: None
Due date: September 24, 2018
Years in Charlotte: 34 — I’m a real native! John and I built a house in Fort Mill in 2016, but I still go to Charlotte almost every day.
Occupation: Content Lead at Wray Ward by day and writer/runner/rare disease advocate by night
Tell us about when you found out you were pregnant:
I had a hunch not long after Christmas, but I knew for sure on January 16. It was a cold weeknight, and my husband was in Louisiana for work. I called him immediately and later wished I’d had the patience to wait until he got home 24 hours later. It was hard not being able to share that experience with someone else in person (I love my dog, but she can’t talk). My mind raced so much that I couldn’t sleep at all that night. Though we’d talked about kids for a while, I was terrified. John, on the other hand, was thrilled.
How has your first trimester been? Any strange cravings/aversions?
At first, I didn’t feel different at all. At seven weeks, I ran a hilly half marathon (my 21st) in Sedona, Arizona, and I felt so great at the finish line, I was kind of annoyed that I hadn’t pushed myself harder. We spent the next five days hiking in remote slot canyons, and other than having to make more frequent pit stops (which can be difficult in some of the places we hike), I felt like myself.
As soon as we got home from Arizona and I went back to work, my body remembered it was pregnant. I never got sick — I just felt “off.” Waistbands felt excruciating, even though I actually lost five pounds. Though I’m a night owl, I’m now exhausted by 8 p.m. My sense of smell is a lot stronger than usual. Here at the end of my first trimester, I still want nothing to do with vegetables, and for a long time, I didn’t want sweets. I’ve been surviving mostly on bread and smoothies. And, now that I like sweets again, soft-serve ice cream.
Tell about your work for your sister, Taylor and more about Taylor’s Tale:
My sister is 16 years younger than me, but we’ve always been close. When I was in college at UNC, I made sure to spend a lot of weekends with her. Taylor always seemed perfect in every way, and when she was diagnosed with infantile Batten disease one month after my wedding in 2006, I was devastated. Batten disease is a rare, fatal neurodegenerative disease that strikes mostly children. It causes blindness and seizures, and patients lose their ability to walk, talk and swallow food. It’s universally fatal.
Taylor’s Tale is working to help change that, though. My mom, Sharon King, and I founded Taylor’s Tale with the help of good friends in Charlotte not long after Taylor’s diagnosis. We’ve raised more than $1 million and have been able to do groundbreaking work with those dollars. North Carolina has a rare disease law named after my sister, and that’s really due to my mom’s vision and blood, sweat and tears. We’re raising money to fund the first standard of care for infantile Batten disease. I’m most proud that later this year, a gene therapy clinical trial is expected to start for kids like Taylor. The technology is licensed by Abeona Therapeutics, but it exists because of our work with a young scientist named Steve Gray (then at UNC, now at UT Southwestern). It’s painful knowing none of this is happening in time to save Taylor’s life, but she already has a powerful legacy. I believe kids who once had a death sentence will live because of work Taylor inspired.
What would you consider to be your biggest accomplishment to date?
Writing my first book, Run to the Light. I’ve wanted to be an author for as long as I can remember; I never imagined I’d start like this. I’ve written a blog about my sister and our work for more than 11 years, but when I ran the Charlotte Half Marathon blindfolded in 2013 (Taylor ran blind, too, with Girls on the Run), the experience became the spark for this book. I trained for the race when I was at my lowest point emotionally — ever. Realizing I couldn’t save Taylor made me wonder what I wanted from life or, on my worst days, if I even wanted to go on living. I didn’t know it at first, but I had to learn to “see” the world like my blind sister to survive.
Run to the Light isn’t really about Batten disease or running, though those things are important to the story. This book is really about the power of believing in something, even if that “something” doesn’t mean what it once did. It’s a testament to the power of the human spirit and our ability to find the good in the bad, if we’re willing to look for it. I can’t wait to share it with the world.
The book comes out in November, and I’ll run the Charlotte Half Marathon blindfolded again (about six weeks’ postpartum) to help celebrate the launch.
You were a presenter at the TEDxCharlotte last year. Tell us about your experience.
Exciting. Exhausting. Exhilarating. Life-changing. Giving a TED talk is something that, for most of my life, I never imagined I’d be capable of doing. I grew up shy and introverted (I’m still introverted), and public speaking terrified me. Starting Taylor’s Tale put an end to those fears pretty quickly, but a TED talk? That was different. I worked on the talk — in some ways,15 minute version of Run to the Light — for almost seven months. I practiced it so much that my husband knew it word-for-word, too. We joked that if something happened to me, he could go onstage in my place, like an understudy. I met incredible people and learned a lot about myself. Most of all, I put an important message in front of a lot of people on a platform we’d never had.
You are publishing Run to the Light, a book about your sister living with Batten disease. Tell us about what it was like to pen this.
I wrote the 87,000-word manuscript in a whirlwind 10 months. I wrote on planes, in coffee shops, at home in the middle of the night and in the kitchen of my office at lunch. It sounds exhausting, but writing the book is one of the most rewarding things I’ve ever done. I cried a little when I finished it. Batten disease has stolen so much of my sister that we’ll never get back, so writing a memoir gave me a unique chance to relive experiences we’ve lost (even things as simple as taking her through a car wash for the first time or going out for ice cream cones on a hot summer day). My mom and I have opposite feelings here. She’s actually never read the manuscript — she says reliving happy memories would be too painful. But for me, reliving those days was an amazing experience.
I have a background in fiction writing, and Run to the Light reads more like a novel than nonfiction. It just happens to be true. I partnered with amazing editors I met through the Charlotte literary community, and the manuscript got great early interest from some top literary agents. I signed with an agent for a short stint, but I ended up getting a deal with a small press on my own. They have a penchant for stories of ordinary women doing extraordinary things.
Now on to some baby questions.
What are you most excited about next September?
I think I’m most excited about seeing our baby — that mingling of two people to make a new life — for the first time and, in the weeks, months and years that follow, watching him or her become a little person with thoughts, feelings, hopes and dreams.
On the flip side, what are you most nervous about?
Balance. Between working full-time, helping run a charity, writing and marketing my book and running races all over the country, I’m over capacity now. As a mom, I want to be present, not distant. But I also don’t want to sacrifice the things that make me who I am. I’ll be learning the art of balance as I go, just like everyone else.
What baby items do you already have an eye on or are you excited about registering for?
Is it bad that I have no idea? I’m a planner, but honestly, I haven’t gotten that far yet. I do want my child to have lots of wonderful books, because reading has always been a big part of my life.
What’s your ideal date night?
A long walk on the greenway, a healthy dinner at home, and ice cream cones with our dog, Daisy. I like getting fancy and going out occasionally, but deep down I’m really a simple person with simple needs. John’s like that, too. We started dating when we were 17, and we can still make our own fun.
What’s your favorite thing about the Queen City?
I’m a native, so some of my favorite things about Charlotte are old staples: driving beneath the tree canopy on Queens Road West, feeding the ducks at Freedom Park or ordering milkshakes at Pike’s Soda Shop (I know it’s in South End, but I covered it for my high school newspaper, so that makes it an old staple). I also love that I can be in the mountains in two hours (we got married in Blowing Rock) or at the ocean in three hours.
Any advice for other expecting working moms?
Be willing to give up a little control and just let things come to you. I hope I can take my own advice.
Fun fact that nobody knows about you:
My fingers are a little out of shape these days for lack of practice, but I’m a classically trained pianist. I started lessons with Charlotte’s Dzidra Reimanis before kindergarten and continued into high school. My mom was also a piano teacher, and she was fanatical about daily practice at home. Maybe I could have done something special with music if I’d loved it like I loved playing soccer. In 2010, I inherited the grand piano my mom grew up playing. Sometimes, I like to check my sight-reading skills and play all the popular music I didn’t have time to play between competitions and recitals.
Favorite app:
I don’t think I can pick just one! I love Spotify for music — I can attach each chapter of my book to a different playlist or artist. I just got into Goodreads (I joined not long after I got my first ISBN number as an author). I swear by a yoga app called Down Dog, because I enjoy the benefits of yoga but don’t love the classes. Now, I appreciate The Bump for its answers to the crazy questions I have as a first-time mom with a Type A personality.
