The Theory of Love

August 31, 2020
Janelle Thomas MSN, RN
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Debra Lewis has been working at Care Options for Kids’s Naples office for three and a half years, but she’s been a nurse for more than four decades. Since the first day she arrived at Care Options for Kids, she’s been the caregiver for the same person, L.F., who has a degenerative neuromuscular condition. As a result, L.F. needs a ventilator, a wheelchair, and is non-verbal.

“I knew I wanted to be a nurse since I was five years old,” Debra recalls. “I grew up in a rural area, and I would always look around for animals who needed my help and try to cure them. I one time made a splint out of ice cream sticks to help a limping bird.”

That same generous spirit is still with her today, as she helps take care of L.F. “I started coming here when she was a pediatric patient, but now she’s in her early twenties. I’ve been caring for her six or seven days a week, for 12-hour shifts. But it doesn’t feel like work because I enjoy spending my time with her.”

Debra explains how, despite L.F.’s disabilities, she has a very happy life. “She’s like Stephen Hawkins. She even has a fancy machine to communicate with people. She’s absolutely brilliant, and she graduated high school, which made us so proud of her.”

When asked if she’s seen The Theory of Everything — a movie about Stephen Hawkin’s life — she said she didn’t know there was one. “Is that on Netflix? I’ll definitely have to watch it with L.F.!” L.F. could hear the conversation and she was thrilled.

“Something I really love about being in L.F.’s life is her positive attitude. A typical day for me includes weaning her off her ventilator, suctioning the machine, showering her, getting her dressed. And every single time I do something, she uses her machine to say ‘thank you,’ or ‘I appreciate that so much.’ She’s also really funny, and she has no qualms about telling me to clean up messes.”

Debra also describes her favorite moments with L.F. “Every single day, after her shower, I doll her up. She loves it!” Debra gets out several outfits and shows each of them to L.F., who either approves or vetoes the choices. “She’s a diva and she knows it. We have so much fun picking out what she’ll wear! She has the best clothes, the best everything!”

That positivity is something they have in common. When asked what’s the most important lesson she’s learned as a nurse, she doesn’t hesitate to answer: “To always show up like you own the world. Even if something bad happens in your personal life, make things better for the people you’re caring for.” Debra continues, “In 1989, my mother passed away. I bawled my eyes out, then wiped off my tears and went to work with a smile. I want my patients to have a happy nurse. I sit down on the bed with them and chit chat. I always want them to see me in a good mood. It really makes a difference in their day.”

The COVID-19 pandemic has affected her routine with L.F. “Normally, we’d go to the movies or the theater. Sometimes, I’d take her to Disney World. But now we stay indoors all the time. I wear a mask. I wash my hands a lot. And when I’m not working, I do everything I can to stay safe and healthy. I’m mindful of it because I want to protect her. At this point, it’s all about her.”

Debra originally moved to Naples to be closer to her son, who lived in the area. But now, he’s moved to Orlando. When asked if she’d move back to be closer to him again, she says no. “I’m with L.F. almost every day of my life. I love her so much. Leaving her would leave a gaping hole in my heart.”

When it was time to end the interview, we told Debra and L.F. to have a good day. L.F. promptly used her machine to communicate: “Thank you! We’re already having a great day!” And so they are. Every day.