ST. GEORGE — Ben Thomas is facing the reality that he has a disease that will take him away from his young daughter much too soon.
But rather than let that thought get him down, he is creating memories she can hold onto once he's gone.
Two years ago, Ben loved to run, ride his bike, and canyoneering. He liked to travel to new places with his wife, Jena. But that all changed when he noticed his left leg wasn’t moving like it used to in the spring of 2010. Twitches in his shoulders and upper arms soon followed.
Ben was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The disease causes the person to lose control and strength of their voluntary muscles. When muscles in the diaphragm stop working, they lose their ability to breathe on their own. Most people with ALS die from respiratory failure, according to the National Institutes of Health. Ninety percent of ALS patients will live only three to five years after being diagnosed.
But the 31-year-old Thomas said he has always been an optimistic person and he isn’t letting statistics dampen his spirits.
"I guess you just learn to focus on the things you do have, the things that you can do,” he said.
“Maybe my legs don't work, but I can make my daughter laugh," he said with a big smile on his face.
The illness has helped him and his wife realize what matters most in life. “Our whole understanding of (life) changed,” she said. “Things just started to mean more.” Cherishing life and every minute they have together was important.
That’s when Ben told Jena he wanted to write letters to his daughter Emmerson. She loved the idea.
“Ben has so much personality, and I think his perspective as a father, his love for Emmerson is just, just overwhelming,” she said.
In the letters, he talks a little about ALS, but he focuses on the little things he cherishes. “He talks about little things you know, ‘Emmerson you did this today. You are crawling. This is the word you said. This makes me so happy,’” Jena said.
Not quite 2 years old, Emmerson Thomas is Ben's only daughter.
“I started writing letters to her at this stage of her life that she won’t remember,” he said, “but also give her a glimpse of how I view things. I give her advice.”
He is also going to write his personal history, so she can know what her father was like at her age and what he has done his whole life.
"His sense of humor and his ability to just be OK with things and to enjoy life regardless of how it's going … and just be positive and supportive of me even though he is going through something really difficult … that really inspires me," Jena said.
She hopes her husband's attitude will also inspire their daughter when she reads her father's memories of their family.
"It might be painful for a little while, or difficult and sad, but we believe in an afterlife," Ben said. "We'll be together again … and 300 years from now we'll think, ‘Remember when you had ALS? What were we so worried about?'"
One of his biggest hopes is that she will never be embarrassed of him being in a wheelchair and not being able to do certain things. “Even though you’re only 18 months old, whenever you help me with something, I feel like you love me and that you not embarrassed,” he said, getting choked up as he reads from a binder of his letters. “Thank you.”
For now, he wants to tell his daughter about the time her mother took her out of church for screaming about how much she loves balloons.
"When you came back in, there were other parents in the hallway that said their kid started to freak out about the balloons after you showed them," he read. "You are quite the ring leader."
And he tells her how she loves to help her daddy.
"When I eat, my hands get messy because they don't work very well. Lots of times you get into the baby wipes and bring one over and start wiping my hands," he read.
And in the time they have left together, probably his most poignant message to his little Emmerson is one of happiness.
"I'd probably want to tell her that she can be happy no matter what," Ben said, his voice breaking with emotion and tears in his eyes. "Happiness is a choice. People can take things from you, or your health can be taken from you, but you can always choose to be happy."
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