SALT LAKE CITY — Cary McConnell’s face is consumed by smiles and his sentences punctuated with laughter as he listens in disbelief to descriptions of his daughter’s experience learning to ski.
“I can’t even believe it’s the same child,” Andrea McConnell said as her husband shakes his head and laughs after listening to multiple accounts about Michelle McConnell’s first day on the slopes. “This is a child that we’ve prayed so hard that she’d make one goal on her soccer team, just one time in her life. … It’s just unbelievable.”
The joy is an unexpected reprieve from the guilt, worry and sadness that has saturated the lives of the McConnell family since then-11-year-old Michelle McConnell was diagnosed with bone cancer. A little more than a year ago, the family was just beginning what would become a series of agonizing, life-altering experiences.
They never imagined the depth of pain and loss they would endure, nor could they predict how a sports camp would help heal them.
When Michelle McConnell first mentioned the aching in her leg, her parents thought it was just the side effects of a growth spurt.
“She’d complained about her knee hurting,” her father said. “She started complaining, limping a little maybe some time after the first of the year. I think we just chalked it up to growing pains.”
But the complaints became more frequent, the limping worse, and in February 2016, Andrea worried about her participation in a dance group.
“I was going to pull her out at the end of February because she was really limping and hurting and waking up at night with the pain,” her mother recalled. “The dance teacher said, ‘Why are you letting your kids rule you? … You’re just babying (her) and there is nothing wrong with her leg.’
"So I took her two more times, and I could tell, there was a point you could tell in her face that there was something more (that was) wrong.”
On a Saturday afternoon, Andrea and Cary McConnell took Michelle to a clinic in Spanish Fork. The doctor called them back to look at their daughter’s X-ray.
The doctor said he “didn’t like” the gray spot near the growth plate on Michelle’s right leg. He sent them to Utah Valley Hospital in Provo and told them not to leave until a radiologist from Primary Children’s Hospital had read the scans.
“I was freaking out,” Cary McConnell admitted. “I was thinking, ‘OK, this is much more serious than just growing pains.’”
That same doctor talked to them by phone after the second set of tests were complete. “They believed it was bone cancer, but they wouldn’t know for sure until the following Thursday when they had scheduled Primary Children’s to do a biopsy.”
The biopsy confirmed their fears on March 17, 2016, and then began a struggle of how to treat the tumor. The McConnells wanted to pursue natural methods, while doctors insisted Michelle needed two rounds of chemotherapy before surgery.
Doctors gave them two months to pursue nontraditional methods of treatment, and they thought it was working. But by June, Andrea McConnell said doctors pressured the family into submitting to chemotherapy.
All the while, Michelle lived with consistent pain.
“She didn’t walk on that leg from April on,” her father said.
Eventually, doctors told the McConnells they’d have to amputate Michelle’s right leg above the knee in order to stop the spread of the cancer. Both parents worried that was too drastic, but they also felt boxed in and unable to change the course set for them by their doctors.
“She had no idea that her leg was going to be amputated, even though she was always in the room at every doctor’s appointment,” said Andrea McConnell, “until the Monday before.” Andrea watched her daughter struggle with that news, and worried she was losing her will to live.
“I just prayed, ‘Oh, Heavenly Father, just bless her with the courage to make it,’” her mother said, choking back emotion as she recalled the first moments of Michelle’s life without her leg. “It was 6 o’clock in the morning, just her and I in the room, and she just started crying and she said, ‘Mom, where is my leg? What happened to my leg?’ That’s got to be the most painful experience for a parent to go through.
"If I truly believed that her leg should have been amputated, it would have been a different story.”
So how did they help Michelle adjust to her new reality when they weren’t sure they could?
“I don’t know how we lived,” Andrea McConnell said, crying. “Just moment to moment. I don’t know how sometimes we get up in the morning.”
And then Cary McConnell added, “Because she does.”
“She’s amazing,” his wife agreed.
“You can see how strong that kid is,” he said, choking back emotion. “She could have folded multiple times.”
More than a camp
Michelle looked uncomfortable as a volunteer from Shriners Hospital secured her into the sit ski with foam wedges and straps.
When asked how she felt, she admitted she was more nervous than excited. That was evident as she and her guide headed down the hillside adjacent to the parking lot at Park City Mountain Resort earlier this year.
But her fear subsided, she said, “as soon as I was on the hill.”
By afternoon of the first day, Michelle was skiing the resort’s biggest hillsides in a hoard of other camp participants and volunteers. When the group reached one of the resort’s highest points on the mountain, she and her guide stopped to take in the view.
Her grin was constant.
One of the guides asked if anyone wanted to lead the afternoon’s last run and Michelle’s hand shot up. They left the breathtaking view to carve up a new run at speeds that indicated she was no longer afraid.
After the first day on the slopes, Michelle sat on a snowbank next to three other campers plotting when and how they would hurl snowballs at camp director Matt Lowell. She didn't even look like the same little girl who expressed reservations about participating.
Marinia Ivie understands Michelle’s transformation better than most because it’s an experience very similar to her own.
Ivie volunteers at the “Un-limb-ited” Amputee Camp each year because of the impact it had on her when she was 14.
“I was fortunate to get into camp a few months after I lost my leg,” she said. “I learned right away the abilities I still had, I learned what I hadn’t lost.”
Passionate about a number of sports, Ivie said in the months after losing her leg in a car accident she assumed she’d have to adjust to a life without sports. The camp helped her realize that she just had to figure out new ways to play the games she loved.
“I credit the person I am to the camp,” Ivie said, adding that even though she had people talk to her about their own experiences with amputation, it was seeing and meeting other amputees that changed her ideas about what was possible.
“Being able to relate to someone your own age, someone going through the same things, it makes a big difference. Camp allows them to come together and be in a safe (environment), to not be judged, where they can watch each other and learn, where it’s OK to do it a different way because everybody is doing it a different way.”
Shriners Hospital began providing both summer and winter camps in 2005. With the support of the National Ability Center and Park City Mountain Resort, they’re able to accommodate almost any disability.
A couple months after the camp, Michelle sat with her parents and tried to articulate the impact the camp had on her perspective.
When asked what she enjoyed most, she responds quickly: “Skiing and meeting all the amputees.”
Reluctant participant
Michelle spent months after her amputation struggling with depression. Her parents never left her alone — not at home, not in the hospital.
Their new reality was harsh, isolating.
In late December, she was at Shriners Hospital to be fitted for a prosthetic leg. Someone suggested she should consider participating in the hospital’s annual sports camp, and her parent saw an opportunity.
“They sold it really good,” said Cary McConnell with a laugh. “She’d really been tied to the couch and home. She’d just gotten the prosthetic and it was kind of clunky and she was still struggling to walk with it.”
Michelle was noncommittal. Her parents recalled trying to coax her into participating — a memory that now seems surreal given the numerous reports of their daughter’s seemingly fearless embrace of sit skiing.
“It was, ‘Do you want to do it? Are you nervous? Are you scared?’” Cary McConnell said, smiling again. “It was like, ‘Kind of give me a shove, give me a nudge, give me a push.’ You can almost see her blossoming, not just from for here (during the camp), but this has opened up her thought process. Seriously, this will be a great thing for her to build on.”
Andrea McConnell contrasted the reports of her daughter’s fearlessness with memories of those moments after her amputation.
Support has come to the family in many forms, most often from their LDS faith through prayer and blessings. But there was unexpected critical support, too.
One of those lifelines has been Paralympic gold medal triathlete Grace Norman, who reached out to them with what may have been the best advice anyone offered the couple.
“She called me a couple of months ago,” said Andrea McConnell. “And she said, ‘Even though you’ve walked by her side every step of the way since September, and you’ve lived every moment she’s lived, don’t ever try and put yourself in her place. Because you’ll never know what that’s like.’ That’s probably the best advice we’ve ever had.”
New possibilities
Sitting in McDonald’s on her 13th birthday recently, Michelle radiated confidence. She is still a young woman of few words, but when she speaks, she does so with a conviction that she didn’t have just a few months ago.
She didn’t find new hobbies on the ski slopes at Park City Mountain Resort. She discovered a universe of hope.
The best part of camp wasn’t learning to ski. It wasn’t even spending several days on her own — no sisters, no parents.
It was, she said, the people she met.
Meeting them gave her the opportunity to see how others struggle and overcome similar situations. She didn’t have to describe how she still mourns the loss of her leg, she didn’t have to explain why, and she didn’t have to answer any questions about how it happened.
She was, for a few days, among people who understood in a way no one else can.
For all her trepidation, it was easier than she thought it would be.
In fact, now she said she’s applying for Shriners' next camp — river rafting — and waiting for next year’s winter camp, where she hopes to learn to snowboard using her prosthetic leg.
“I want to try all the different types of skiing,” she said.
Her mother said recovering from the amputation would have been “hell” if she hadn’t had the camp experience.
“Because of the realization that you’ve lost something that has changed your life forever,” she said. “And not being able to get past that depression of whether or not you want to live or die. She was at that level when they talked her into going to camp. And then she went to camp and saw there can be a life, you can be happy. There (are) still all the emotions she needs to work through.”
Michelle nodded in agreement.
Then the soon-to-be eighth-grader confirms that seeing the possibilities of her life was easier when she met people already doing more than she thought she could. She's even talking about whether or not the Paralympics might be in her own future.
That does not mean the bad days are gone. They’re just not as relentlessly dark.
Michelle struggles to put into words how the camp has changed her, but her parents attempt to do so.
“Because of camp, it’s helped her, it’s helped us,” Andrea McConnell said, looking at her daughter as they prepared for her birthday celebration. “There is life after amputation. It’s not about the cancer any more. It’s about the loss of the leg. We never, ever felt that it was about the cancer. We wanted to do everything we could to preserve the leg, but that wasn’t in the our cards.
"We’ve watched this little girl, who was sort of immature for her age, become an adult … an adult in a 13-year-old body.”