Taylor Made Champion
by Kristin Darell (Prescott)

First published on The Life Kitchen website, March 2016

“My dream is to be an Olympic swimmer.”

 

Taylor’s eyes sparkle as she leans in, sharing her greatest wish. I’ve known this little girl for around ten minutes, but I already have little doubt she can make that dream come true.

 

Taylor is almost ten years old. Like many kids her age, she loves reading, the Minions and doing art. She’s navigating the world of friendships and even the occasional crush. She enjoys talking about clothes, sparkly shoes and her favourite foods – fruit! But Taylor has to be something more than just normal, every day of her life. She has to be strong and she has to be brave.

 

Taylor has Cerebral Palsy, a physical disability that affects movement and posture. Specifically, she has Cerebral Palsy Diplegia, which means the condition affects both her legs. Taylor’s not alone. Cerebral Palsy is the most common physical disability in childhood and affects one in every 500 babies in Australia. There is no known cure.

 

“My achillies are short,” she tells me. “I normally walk on my toes. When I was little I couldn’t straighten my legs, but I can now.”

 

Taylor needs support when she walks, either a frame or walking sticks, or sometimes just her family. But don’t dare feel sorry for her.

 

“I would change my walker, I would take it away, but I wouldn’t change who I am,” she says with a huge grin. Taylor smiles a lot, a smile that reaches her eyes in a way that makes you know she is loving life. But there’s also steel behind those eyes. There has to be. 

 

“She’s going to make some amazing changes in the world.” 

 

It is impossible to miss the pride in the eyes of Taylor’s mum Toni, when talking about her daughter, or the obvious bond they share. “She doesn’t have a lot of self-doubt or accept limitations,” Toni tells me. “She’s a gift.”

 

Having Cerebral Palsy is a daily battle for Taylor, no-matter how brave or strong she is. The challenges start with the simple task of putting her feet on the ground when she wakes up. Her mum helps her strap on her Ankle Fixed Orthotics, or AFOs, which help keep her feet flat. Simple tasks such as dressing, doing her hair or cleaning her teeth have added complications. Most of these she does with one hand, so she can support herself.

 

“When she was younger Taylor would sometimes ask ‘Why do I have to have Cerebral Palsy?’” Toni says, tears welling in her eyes. “As primary carer how can that not break your heart. Sometimes we’d cry together, sometimes we’d just get on with our day.”

 

Taylor says when things get tough she reminds herself just to breathe. 

 

“Sometimes I do say ‘why can’t I be like everyone else?’ But it’s not like I can take it away.” She shrugs and smiles.

 

This pragmatic approach makes Taylor seem so much older than her years, but she’s had a tougher than normal journey, even for children with Cerebral Palsy. In most children the condition is picked up very young, but in Taylor’s case she was two when she was formally diagnosed. That meant she has had some catching up to do. Fast forward seven years and she’s literally climbing mountains.

 

In late February, Taylor became the youngest person to take part in the Krazy Kosci Klimb. Using her walker, she walked 18.4 kilometres from Charlotte Pass to the top of Mount Kosciusko, with the support of her brother Kane, Mum and Dad. It was a journey six months in the planning.

 

“I love swimming and I wanted another experience, a different experience. I wanted to try something on land. I have heaps of challenges, but I wanted to try something more,” she says.

 

Of course, just walking the distance wasn’t enough for Taylor, she had to reach the top under her own steam. So holding her parents’ hands she set off for the summit.

 

“The other teams were waiting for me,” she explains. “They made a tunnel with their hands and we walked through. It was so special.” She pauses a moment and I can see she is remembering the moment. “Except the air horns”, she adds eventually with a cheeky grin. “They were loud.”

 

Toni says she was overwhelmed with pride for Taylor and her son, who carried things and supported her all the way.

 

“It was one of the best experiences of my life,” she says. “It was a weekend filled with love, inspiration and belief in yourself.”

 

Taylor exudes energy and enthusiasm but when I ask her how reaching the top made her feel, her face becomes serious and she takes a long time to answer. When she does speak, there’s a quietness in her voice, all the more impactful because of the contrast to what has come before.   

 

“It was very overwhelming, but I was happy” she finally says.

 

As well as her personal journey, for Taylor, being part of the Kosci Klimb is also about raising awareness and much needed funds for the Cerebral Palsy Alliance. Taylor’s determination is paying off. She’s already raised nearly $11,000.

 

“I’m really happy people have donated money like that,” she says, and you can see the gratitude and excitement in her eyes as she warms up to the topic. “The money will go to sport and rec for the Cerebral Palsy Alliance. It will get people stronger and more independent. Not just me, it will help other people too.”

 

When you’re a family living with a disability, help is something needed on a daily basis, across all areas of life. Taylor’s mum says most days she has to put her boxing gloves on.

 

“You have to fight for everything they get,” Toni says and admits it would be so much harder without the support of the Cerebral Palsy Alliance staff.

 

“They don’t just do it because it’s a job,” she says. “They want to see the kids and adults living the life they love.”

 

Taylor certainly is. When she’s not climbing mountains, she’s usually indulging her other passion – swimming.

 

“I love being free from my walker, free from my sticks,” she says when I ask her why she loves the water. “It makes me feel happy. I feel so calm.” 

 

She trains twice a week and is already punching well above her weight, winning numerous medals at all levels of competition from school to state.

 

“My legs aren’t as strong as my arms,” she explains. “So when I swim I use my arms. I know I want to be an Olympic swimmer and I know I have to train for it, but sometimes I just want to play too,” she says.

 

Taylor’s hero is Paralympic swimming champion and 2014 Young Australian of the Year, Jacqueline Freney OAM. Jacqueline has Cerebral Palsy. In the London 2012 Paralympic Games, she won eight gold medals making her Australia’s most successful Paralympian at a single Games. Taylor told me she’s going to win nine. 

 

Even at her young age, Taylor already possesses a rare quality of spirit. Perhaps it’s a result of having Cerebral Palsy, or maybe in spite of it. Either way, it’s clear she’s ready for whatever life has to throw at her, with drive and determination in abundance. 

 

“Life is full of challenges,” she says. “Life may be stressful, but you can’t give up. If you love something, don’t let people pull you down, let them pull you up.” She pauses again, thinking. Then she looks back at me that determined glint back in her eyes. “When I was younger I didn’t want to use anything, my walker, my splints, my sticks. I just cried and cried. But I know now I can do anything if I just believe in myself.”

 

I have no doubt she can.