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Special needs

My daughter wasn’t supposed to walk—now she’s a cheerleader for Team Canada

Was I afraid she would fall or fail? Absolutely. But all those months of forcing myself to stay behind the glass were good training for me, too.

Team Canada's cheer team routine at World's

Photo: Courtesy of International Cheer Union via Action Movements Photography

My daughter Avery was never supposed to walk or talk. She was born with a chromosome disorder so rare that it didn’t have a name. Yet there she was, 11 years after we received her grim prognosis, grinning from ear to ear atop a human pyramid, as she represented Team Canada in her red and white cheer uniform. In the audience, at Disney’s ESPN Sports Centre, my husband, Adrian, and I cheered and cried.

The first time I cried for Avery was under very different circumstances. It was when the doctors sat us down and prepared us for monumental physical and cognitive challenges, based on what they could deduce from the outcomes for kids with a similar genetic deletion. They warned of profound intellectual disabilities, impaired language and motor skills, seizures, and heart defects. When the doctor said, “Of those on record who survived childhood…” I stopped processing.

As predicted, failure to thrive, angry infections and violent seizures kept our daughter in hospital for months on end in the first year of her life. I was constantly hovering over her crib, exhausted with worry and grieving the loss of what I’d anticipated life would be like with my new baby. Pregnant, I had fantasized about a bustling social calendar with my daughter, not a calendar packed with specialist appointments. When Avery was two, I sought help from a therapist for anxiety. Then after witnessing Avery have a seizure that nearly took her life, I sought help for post-traumatic stress.

Mercifully, Avery made it through those terrifying baby years and as she entered toddlerhood, she got her own set of therapists. Speech therapy helped my daughter find her voice. Physical therapy helped her with balance and core strength. Occupational therapy helped her function as an atypical kid in a world built—for the most part—with typical in mind. But when you’ve seen your child being revived by paramedics or watched your son perform the Heimlich on his little sister during a family meal, your default mode can easily become overprotective. I was a chronic hoverer. I used to make Avery wear a leash whenever we walked near traffic, and a bike helmet when she was learning to climb the stairs.

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Yet despite being saddled with a bubble wrapper mom, this girl was unstoppable. She was determined to ride a bike without training wheels, even though she still struggled to climb stairs without falling. It has taken her three years and hundreds of wobbly laps around the track, but she’s nearly there. (From what I’ve heard, anyway—her father does the supervising; I still can’t watch.) She choked and sputtered and swallowed gallons of water as she learned to swim, but she stuck with it, oblivious to the fact I was observing her incessantly for signs of dry drowning. She wanted desperately to ride a pony, and while the very notion scared the hay out of me, when I saw that helmets were mandatory, I signed the forms, and off she rode with a resounding, “Yee-haw!” Now Avery writes “big horse” on her Christmas list every year. I got her a puppy instead.

When Avery first showed interest in joining a special abilities cheer squad last year, I balked. I thought it might be too dangerous or physically taxing. I talked to another mom whose daughter has been on the cheer team for several years. Instead of telling me to “just relax” or saying “it’ll be fine,” she told me she’d felt exactly the same way in the beginning. Then she gently pointed out that as unnerving as it was for us as moms, the benefits of self-confidence and life experience that kids like our daughters gained from cheering far outweighed any risks. Convinced, even if I wasn’t yet comfortable, I pushed through my fear and signed the forms.

The kids and young adults on Team Eternity (the special abilities team at Power Cheer Toronto) are given every opportunity to push their limits. On a physical level, they have to tumble and dance and hold each other up in the air. But they also push themselves outside their comfort zone mentally by having to figure things out on their own. Parents, even the bubble-wrappy ones, have to stand back in the viewing area and leave their kids in the capable and caring hands of PCT’s coaches and volunteers. Over the weeks I got more and more used to this part, although I’d still sometimes silently mouth “be careful” through the glass or shut my eyes when Avery was perched high in the air.

Avery initially took up cheer purely for fun, but in 2018, the International Cheer Union (ICU) World Cheerleading Association added a special abilities division to the World competition, and the possibility of competing opened up. Coaches Wendy Senra and Katie Kovacs made a video of the team’s routine and submitted it as their bid to compete as part of Team Canada. You can imagine the level of excitement we felt when we got news that the team made the cut and they were going to Disney World, where the competition would take place. There was a lot of fist pumping and jumping up and down. And that was just my husband.

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People ask me if Avery was nervous leading up to the trip. She wasn’t. That’s the thing about this kid—she never worries. She 100 percent lives in the moment. I’m trying to be more like her. And yet before we left for the airport, while she was happily practising her cheer for an audience of all her dolls, I was obsessively packing and repacking her seizure meds and triple-checking our out-of-country medical insurance.

I’m not sure if Avery fully realized what a big deal this international competition was until she ran into one of her biggest idols. My daughter and I watch a reality show on Netflix called Cheer Squad about a Canadian champion cheer team. One of the main characters, Becca, was on our flight. Avery spotted her in line for the bathroom. Naturally we casually slipped into line behind her. (I mean, who doesn’t want to be accosted by an avid fan and her mom while waiting to pee?) Becca was sweet and gracious. She shook Avery’s hand and said, “You’re competing at World’s too, right? I heard about your team. Good luck! You’ll be great.” Avery was uncharacteristically quiet, until we got back to our seats where she let out a slow and breathy, “Wowwww!”

Later as we walked through the resort to our room, there were packs of cheerleaders everywhere. (Our 15-year-old son claims he didn’t notice. He noticed.) We put our handmade “Go Team Canada!” sign on our door and hung a large Canadian flag in our window. We were ready.

Team Canada Special Abilities arriving at ESPN Wide World of Sports, Disney Team Canada Special Abilities arriving at the ESPN Wide World of Sports Complex at Disney World. Avery is holding the "NA" sign.

At opening ceremonies, Canada entered the arena to huge applause. The traditional Team Canada teams emerged and stood in two lines on the stage, forming an aisle. Then our special abilities team paraded in down the middle, in an Honour Guard salute. I tried to hold the video camera steady, but when they handed the Canada sign to my daughter, and she led the procession into view, I lost it.

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Avery’s team competed the following afternoon. As we waited for “Team Canada Special Abilities Traditional Division” to appear from behind the curtain, I don’t know what moved me most—national pride (because oh Canada, was I ever proud to be a Canadian at that moment) or parental pride. Our division was introduced. I held my breath, and “Team Canada Special Abilities” exploded onto the floor, all smiles and confidence and joy. My heart burst.

Cheerleading is about more than giving a good show. It’s about supporting your teammates, both physically and emotionally. It’s about collaboration, perseverance, taking turns and taking risks. I realized, as I watched Avery tumble and leap and execute the choreography without missing a step, that this was exactly what she needed at this stage of her life.

Was I afraid she would fall or fail? Absolutely. But all those months of forcing myself to stay behind the glass, were good training for me too. It took a healthy dose of motivational self-talk for me to finally master the art of letting my no-longer-little girl go. But with practice, I was able to hold myself back so that she could make her mark in the world. After all, this is what I’ve always said I want for my daughter—for her to have the opportunities that any other kid her age has.

Team Canada Special Abilities received a bronze medal at the 2018 Worlds. However, if you ask my daughter, she’ll tell you they won. To her, the real reward was being included—regardless of her differences—in a sport she loves with a passion. My big win as a mom was being able to stand back and cheer myself hoarse, as my sparkle-wearing, flag-bearing, ever-daring champ scissor-kicked her early prognosis into shreds.

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Read more: What life is like for kids with rare genetic conditions Rett syndrome: How life changed after my daughter's diagnosis

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