Parents of limb-different children often worry how their youngsters will meet life’s challenges. The moms and dads often end up learning surprising lessons.
By Rene Agredano
“Dad, is Chase dead?”
It was something no little boy should ever have to ask. But five-year-old CJ hadn’t seen his younger brother, Chase, for two months, and nobody had explained why. Death was the only conclusion he could imagine.
Stunned by his son’s point-blank question, CJ’s dad dug deep for an answer. But the words wouldn’t come. “No buddy, he’s not dead,” he finally said. He still couldn’t bring himself to utter the truth: Three-year-old Chase was at the hospital, recuperating from a life-threatening infection that had resulted in quadruple amputation. But Chad Merriweather realized he couldn’t shield CJ from the situation indefinitely. Secrecy wasn’t working. It was time to handle things differently.
Before Chase got sick, the Merriweathers were just like all the other families vacationing at Disney World in October 2013. Chad and his wife, Chisa, flew with the two boys from their home in Philadelphia to Orlando for a quick Halloween getaway. But less than 24 hours after they arrived at the Happiest Place on Earth, their silly little boy with the irresistible laugh lay in a medically induced coma, fighting for his life as a brain hemorrhage and septic shock ravaged his body. Doctors stabilized him for an air ambulance ride back home, where experts at Children’s Hospital of Philadelphia discovered that a rare flu strain was overwhelming Chase’s immune system.
They would eventually save Chase’s life, but the collateral damage was extensive. As his body conserved energy to protect the major organs, blood flow to Chase’s extremities ebbed to a trickle. The loss of circulation resulted in necrosis in all four limbs, leaving doctors with no choice but to amputate the youngster’s hands and feet. Chad and Chisa practically lived in the hospital as these events unfolded, and they understandably tried to protect CJ from the fallout. Keeping him occupied with outside family members until Chase was out of danger and on the road to recovery seemed like a good decision—until CJ’s jaw-dropping question shook Chad to his core.
“I think as parents in general we underestimate what kids are absorbing and how much information they bottle in,” says Chad. “Kids are so curious that sometimes not including them in these types of things just adds a layer of confusion. They can’t figure it out, so they come to their own conclusions. We ended up scaring [CJ] a little bit more.”
When the boys finally reunited, Chad and Chisa got a powerful sign that everything was going to be OK. Chase was lying in his hospital bed, staring into space. CJ walked in, looked at his brother, and smiled. “Oh! There he is!” he exclaimed, pointing at Chase. There was no drama or crying, just relief and clarity in his voice.
“He was just so happy to see him, and I knew we should have included him much more in the process,” says Chisa.
From that point forward, the Merriweathers committed to handling the situation with strength, optimism, and honesty. As Chase grew stronger and his return to the household approached, Chad and Chisa put their fears aside and made preparations to help their boys get used to their new circumstances. On Christmas Eve, when Chase finally came home, it became obvious that the brothers had the situation pretty well managed on their own.
“CJ was the best therapist,” recalls Chad. “He didn’t treat [Chase] like a kid in a bubble.” The boys immediately picked up where they left off, playing, tussling, and laughing like any pair of young siblings, while instinctively adapting to the changes in Chase’s body. When the boys wanted to jump on the PlayStation, CJ taped the controller onto Chase’s residual limb. Another time, when they had their sights set on becoming Ninja warriors, CJ built a ground-level obstacle course that his brother could crawl through.
“The power of playing was a really positive physical therapy for Chase,” says Chad. The boys’ resilience also helped Mom and Dad Merriweather heal, while teaching them unexpected lessons about raising children with disabilities.
Not in the Baby Books
Chad and Chisa’s experience is hardly uncommon. Children routinely adjust to limb difference far more easily than their parents do. Adults often feel paralyzed by questions and starved for sources of information, leaving them filled with worry and uncertainty. Fortunately, amputee kids tend to invent their own ways of navigating the world, much to their guardians’ surprise and enlightenment.
Molly Stapelman witnessed this unexpected adaptability in her youngest daughter, Ryan, who was born in 2007 with symbrachydactly (a blanket term to describe short or missing fingers). The obstetrician gave assurances that Ryan would grow up healthy, but when Stapelman asked why the condition occurred, the doctor simply answered: “Well, sometimes this just happens.”
The lack of clarity filled Stapelman with anxiety about Ryan’s future. “This wasn’t in the baby books!” she thought, and she couldn’t find many resources to guide her as a parent. The lack of information left her wondering if she’d done something wrong during the pregnancy. “I thought I did everything right,” she told herself at the time. “I ate right, I exercised. Or did I exercise too much? Was it that glass of wine at Thanksgiving, when I didn’t know I was pregnant?”
But Stapelman set her doubts aside when her two older daughters met Ryan for the first time. The girls wanted to know what happened to their baby sister’s hand. “Nothing happened,” Stapelman told them. “That’s just the way she was born.”
The simple answer was enough explanation for the young girls. A short while later, the family was watching the Disney movie Finding Nemo, whose main character is a young fish with a smaller-than-normal limb that he calls his “lucky fin.” The sisters drew a natural connection between the cartoon hero and their new sibling. “She has a lucky fin just like Nemo!” they quipped.
That became the name of Stapelman’s nonprofit organization. The Lucky Fin Project celebrates people born with symbrachydactyly and other limb differences, while providing families with the type of support Stapelman wishes she’d had when Ryan was born. Lucky Fin hosts events, shares information, raises awareness, and connects families with one another. The mother-daughter duo speak all over the country to educate parents about how they can adopt healthy attitudes that benefit their children.
“Parents need to be that confident voice for their child when their child is little, until [the child] can find their own,” Stapelman explains. “It really starts with the parents in modeling that confidence they want the child to have, even if they’re not feeling that confident themselves.”
Thousands of parents and kids have gained that confidence by participating in Lucky Fin Project events and social media campaigns. Worries fade away as members discover life hacks for everything from peer-to-peer communication to playing instruments and hair styling. “Once they get a snapshot of other children and other adults with limb differences, they’ve got something to look to,” Stapelman says.
Nicole Kelly wishes she’d been able to connect with an empowering community of amputees during her own childhood. Born in 1990 with congenital limb difference, Kelly grew up in a small Iowa town where she never once met another child with a disability. “I was the ‘different’ kid,” she laughs. “Everyone in my hometown knew who I was.”
While Kelly is grateful that her parents raised her with acceptance, understanding, and love, they didn’t know how to help her come to terms with her limb difference. Her only goal during childhood was to blend in with the other kids. For example, when her class had to complete the annual Presidential Physical Fitness Test required of schoolchildren at that time, Kelly declined her teachers’ offer to skip the pull-ups. “It was more important to me to just get up in front of my class and try,” she recalls. “It would have felt worse at that age to be singled out.”
Kelly was so focused on conforming that she and her family banished the word “disability” from their vocabularies. This was a common approach a generation ago, but Kelly has come to realize that the omission was actually more of a hindrance, and she hopes today’s parents will understand and learn from that mistake. “A huge piece of my growing up was being taught at all times that disability was not a piece of my identity,” she says. “But it is such a huge piece of my identity.” By pretending she wasn’t disabled, Kelly didn’t acquire a framework for understanding why people asked shockingly inappropriate questions or discounted her capabilities. As a result, she often blamed herself for awkward, embarrassing, and confusing situations.
It wasn’t until she entered graduate school in her late 20s that Kelly finally gained the tools to embrace disability as part of her identity. She learned that avoidance leads to misunderstanding, and that the way to change society’s deep-seated discomfort with disability is to talk about it openly and honestly, rather than sweep it under the rug. Had the adults in her life understood the importance of acknowledging disability, Kelly believes, she could have spent less energy trying to fit in with her peers and stopped viewing her limb difference as something to hide from.
“I woke up,” she says. “Now I feel like yelling into the void at everybody who looks anywhere remotely like me, ‘I have answers for you! Let’s hang out!’” She is adamant that children with disabilities today should have it easier than she did. “The next generation should not have to wait until they’re 25 years old to understand their experience and have these answers.”
Chad and Chisa Merriweather would wholeheartedly agree. After their initial misstep of hiding the truth about Chase’s amputations, they’ve learned to address his disability with honesty and straightforwardness. And, like Molly Stapelman, they’ve created a nonprofit organization to help other families benefit from their own experience as parents of a limb-different child. Launched in 2018, Chase Ur Dream offers information and connections about everything from prosthetic technology to adaptive school programming, camp and sports opportunities, physical therapy, pediatric health care, financial assistance, and more. The goal is to build an ecosystem in which families who’ve been touched by limb difference can connect with healthcare providers, educators, and other community partners.
Now 11 years old, Chase is the subject of two children’s books illustrated by Chisa. He’s thriving at school and excelling as an adaptive athlete. The Merriweathers’ early fears about Chase’s future have given way to confidence and optimism. Having seen what he’s capable of, there’s almost nothing Chase might do that would surprise them anymore.
“The more and more he grows into his own person, it seems like a world of opportunity,” says Chad. “We’ve just gotta keep pushing him and allowing him to do whatever he wants to do.”