Shepherd Center Caregiver Feature: Amy Shaw, Mom of Holden Shaw
When her son sustained a spinal cord injury, they made a deal to limit their bad days and focus on how to make the most out of life.
Bad days are inevitable for everyone. Survivors of spinal cord injuries are no different. But Amy Shaw and her son, Holden, 17, had a rule when it came to bad days. Those days when the anger or grief snowballed. When the what-ifs returned around the four-wheeler accident that caused Holden’s spinal cord injury. When the road ahead seemed too long.
“We were having one of those days early in our time at Shepherd Center,” Amy says. “And I told Holden, ‘OK, one day. We can have a bad day. We’ll give ourselves today. But not tomorrow. We can’t go down that path. I won’t let you. We’ll let today be today and figure out how to make tomorrow better.’”
In the year-plus since that moment, Holden has had more good days than bad. That’s largely due to Holden’s positive personality and older-than-his years maturity, but it’s also a tribute to the family and friends in his corner — none more so than his mom.
During Holden’s first few weeks at Memphis’ Regional One Health, Amy and her husband Jonathan took turns staying with Holden, due to coronavirus restrictions. When he moved to Shepherd Center, Jonathan stayed home to care for the rest of their kids, while Amy remained by Holden’s side.
“Jonathan was heartbroken not to be with Holden and I missed the kids so much, but we made it work,” Amy says. “I couldn’t have done this without what they did at home.”
Her oldest, Taylor, had just graduated from college and put her career on hold to pick up many of her mom’s duties, both at home and alongside her dad at their family-owned business. Meanwhile, Amy’s other daughter, Olivia, was starting college and her youngest son, JD, was beginning eighth grade — each persevering despite dramatic changes around them.
In addition to going through Shepherd Center’s inpatient Adolescent Spinal Cord Injury Rehabilitation Program, Holden spent nine weeks in the outpatient Spinal Cord Injury Day Program.
“We were able to stay in family housing, so it was like having training wheels,” Amy says. “Best thing we could have done. We got to figure some things out on our own while still being able to call the nurse if we needed to.”
“With inpatient, you’re almost in a bubble. Everything is safe, accessible, wonderful. Holden made friends for a lifetime, and so did I. But I was scared to death of being responsible for everything Holden would need when we were back home.”
By the time they got home, Amy was ready for those challenges. The only thing she wasn’t prepared for was mustering the daily energy required to be a full-time caregiver.
Her weekdays start around 4:45 a.m. After Amy gets ready, she and her husband get Holden in his chair. Amy handles the cathing, the bathing, the dressing and the meds. Next, it’s getting Holden’s little brother ready for school, transfers to the car, and, finally, drop-offs for school. The evenings reverse the process.
“The biggest thing is the exhaustion,” she says. “And giving up your life. It’s a full-time thing. For a year, until Holden went back to school, I didn’t have time for myself. You lose some of who you are when that happens. And I’m fortunate! I have a ton of support from my family and Holden’s friends. Not everybody has that.”
Holden has now progressed to a manual wheelchair, so outings with friends are easier. He’s doing well in his senior year of high school. And he and his mom still have their agreement: Don’t let bad days multiply.
She’s also learned, more often than not, how to give the best version of herself to her son. And flip her own bad days around.
“When I’m tired or frustrated, I step back and think, ‘Come on, how would I feel in Holden’s shoes?’” she says. “He’s way stronger than I am. It amazes me all the more at what a happy, bright kid he is. Seeing him smile, that makes anything I have to do so beyond worth it.”
Written by Phillip Jordan
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.