|Jena and Ben Thomas on their way to CBS Studios for the MDA Show of Strength Telethon's first night of filming.
The Muscular Dystrophy Association (MDA) is a nonprofit organization that works to help patients with neuromuscular diseases. ALS is included in the umbrella of diseases that MDA covers. Thank heavens! MDA has done so so much for us. They help cover the cost of all of our doctors' visits, they have a loan closet full of equipment we can borrow (right now we are using their Hoyer lift, shower chair and hospital bed), and they have been an essential support system for us.
We love MDA and are grateful for all that they do for us. When they called and asked if we would be willing to share our story on this year's annual MDA Show of Strength, we said absolutely.
In June, a team of 10 people showed up at our doorstep in Idaho. There were light, camera and sound people, as well as Jim, our very own producer who has worked with lots of big names, including Taylor Swift. It was a long day of filming that included wardrobe changes, a date night scene with Ben and me dramatically gazing into the distance, and lots of Emmy and Ben action. By the end, I felt like a not-so-skinny version of Emily Maynard from "The Bachelorette."
After our shoot, MDA invited us to L.A. for the filming of the performances that will be featured on the MDA Show of Strength. We were thrilled with the idea and gladly packed our bags. We made the drive from Idaho to Saint George and then from Saint George to L.A., with the help of Ben's amazing parents.
We were supposed to be dressed in business casual and standing in the front lobby of the hotel at 4:30 p.m. on Wednesday, July 31. We thought we could leave that morning and be there with plenty of time to spare since it is only a six-hour drive from St. George to L.A.
Despite our best intentions, we left later than planned. And due to small bladders in the car (names shall remain anonymous), we had lots of stops. We ate lunch at the McDonald's in Barstow. It was so hot that patches of tar in the asphalt had started to melt, and Ben managed to get stuck in a serious tar pit. It took sweat and lots of pushing to get Ben out. By the time we were done, Ben's wheels, our van floor and my legs were covered in tar.
Stress levels started to rise when we realized we were now very behind schedule. We pulled into the parking lot of the Sofitel Hotel at exactly 4 p.m. and were met by bellmen and valets. I immediately realized we were way out of our league. In my book, the Holiday Inn is living large. The Sofitel blows the Holiday Inn out of the water. We pulled up in our dusty wheelchair van next to fancy cars driven by incredibly glamorous people.
I hopped out of our van sans makeup with tar-covered legs and began handing the bellman Emmy's stuffed animals, boxes of Cheez-Its and fruit snacks, and plastic grocery bags filled with odds and ends. Meanwhile, Eric pulled a step stool out of the trunk and started untying the straps on our car topper. Ben got his wheelchair stuck trying to drive out of the van, and Emmy popped out of the car with water wings on in pursuit of the pool. I told myself we were blending in nicely, but the looks we got said otherwise. The MDA rep met up with us, took one look at me, and said, "I was going to go over a few things with you, but I see that you need to freshen up so I'm just going to take you straight to your room." Hmmm.
After the rush of getting to L.A., the rest of the trip went fabulously. We had the chance to meet Kenny Loggins, Jessica Sanchez, Lee Ann Womack, the drummer for No Doubt, Paula Abdul, Carol Brady, and Will Schuester from Glee. The second night, I even had my hair and makeup done at the studio .. .in the chair next to Kenny Loggins.
The MDA Show of Strength [aired] Sunday, September 1 on ABC. There [were] great performances as well as six amazing stories of people living with neuromuscular disease, including Ben's. This is the first year a major network has carried the Show of Strength. Please show your support by tuning in and help make this show a success as it helps MDA raise funds for and awareness of many devastating diseases, including ALS.
This blog was posted originally on August 14, 2013, as Show of Strength.
About the Author
Ben and I have been married for nine years. In September 2010, three months after our first child was born, Ben was diagnosed with ALS. ALS is a neuromuscular disease that causes death of the muscles and is ultimately fatal. There is no known medical cure. Despite the difficulties, we are learning to put our trust in God as we travel through these deep waters. We know that He is watching over us and will sanctify and bless us on our journey.
Editor's note: To learn more about Ben and Jena and their daughter, Emmerson, be sure to watch the Thomas' Show of Strength profile.