How juggling family, study, career and disability is achievable

How juggling family, study, career and disability is achievable
Posted on Mon 29 Jul 2019

by Tina Wild

Talking to Marley Lyras-Hull makes me think there must be more than 24 hours in her day. She works full time at CPA while studying for a degree, has three daughters, one of whom lives with a disability. And, Marley herself lives with cerebral palsy. Yet she still manages to have a permanent smile on her face and radiate positive energy. Where does she get her motivation and energy from?

Marley’s inspiration and energy are buoyed by continuously challenging herself, learning new skills and exploring her innate creativity. She’s currently studying towards a degree in interior design, which will be the fourth degree under her belt. Creativity is in her genes, she comes from a family of talented artists, and her previous degrees have been in other creative subjects: media and communications, and graphic design.

Interestingly, Marley is also inspired by Buddhism and tries to adopt his philosophy on living life peacefully with love and acceptance.

 

Success requires sacrifice

Nothing worth achieving gets done without effort and sacrifice. Marley admits that when something has to give, it’s a good night’s sleep, but she wouldn’t have it any other way.

A lot of Marley’s time is taken up caring for her daughter Leah’s condition, Niemann–Pick, a rare progressive genetic disorder characterised by an inability of the body to transport cholesterol. However, thanks to NDIS funding Leah now has a carer between 9-5 during the week, while Marley works. Marley’s current role at CPA is in the fundraising team as a Campaign Coordinator for Steptember, a global event that challenges people to take 10,000 steps each day of September to raise funds for cerebral palsy.

“I took a step back from a managerial role while I was studying. It means I can give everything to my job yet still have time and energy for family and study.”

Family life is precious and the love, support and stability she gets from that is very nourishing. Despite her busy schedule, Marley makes time to kick back and spend an evening watching a movie with the family.

“I wouldn’t be able to do it all without the incredible support of my husband and daughters,” she says. “Kiara and Olivia are amazing, they help so much with their sister Leah. And they help me with the everyday tasks I struggle with because of my CP, like tying my shoelaces!”

 

Mindset is the key to achieving goals

Marley believes that “frame of mind makes a big difference” to achieving your goals. She developed her positive mindset early on in life from her family’s incredible unconditional support and bravery.

“I really wouldn't be the person I am today without their support and the incredibly difficult decisions that they had to make throughout my childhood, including making hard decisions to go ahead with never-before-done surgery to improve my walking, even though all advice was against it.”

Growing up in the 70s, the perception was that disability presented huge obstacles in life. When diagnosed with CP as a child, Marley’s parents were told she wouldn’t run, or be able to achieve much. The attitude and outlook was pretty bleak, with no encouragement to overcome the obstacles of disability, only to accept it and live and within the limits. Yet, thanks to the determination of her parents, she went on to get her drivers’ licence, go to uni, have a successful career, and a family.

“The unconditional support and bravery in my parents’ decisions is what made me the determined person I am today.”

Having two sisters and being a twin also helped Marley develop a healthy sense of rivalry, impetus and determination. Again, against advice at the time, her parents sent her to a mainstream (rather than special needs) school. This allowed her to go to school with her twin sister, so she never felt different from anyone else.

Her sisters studied at university, and eventually she wanted to achieve that same goal, which she did, not once, but four times.

“I was a late bloomer, while my sisters were at uni I started working in admin. At a certain point I became determined to prove to others, as well as myself, that just because I have CP doesn’t mean I can’t go to uni. One of my proudest moments was graduating.”

 

Continuous support

Marley’s had a lifelong relationship with CPA, or the Spastic Centre, as it was formerly known, since her diagnosis as a child. She attended therapy from the age of two until nine when she had surgery to improve her gait.

These days, CPA is not only her employer, but also provides support for her 19 year old daughter Leah, who lives with Niemann–Pick, for a range of support services including speech therapy, gym and hydro pool, and youth programs such as Leisure Labs and Youth Labs, which are designed to develop the necessary practical and social skills to build independence and transition to adulthood.

 

What does the future hold?

Not content to rest on her laurels, Marley plans to start her own interior design business once she’s graduated from her latest degree, while continuing her fundraising work at CPA. She’s come up with a unique concept which will enable her to play to her creative strengths while managing her limited mobility. Her idea is to launch an e-design business, where she focuses on designing from home online, with her husband as draughtsman, carrying out the physical site visits.

Marley’s other ambition is to meet Hugh Jackman, and I have no doubt she’ll achieve whatever she puts her mind to. Marley urges anyone who lives with cerebral palsy, or any other disability, to not be limited by their disability, the fear of failure, or other people’s perceptions.

“The voices in your head can make you believe people think you’re hindered. You have to push through that. Just have a go, what do you have to lose? You might surprise yourself.”

 

Contact our customer service consultants to find out how we can support you to achieve your goals.

Written by Head of Reserach at Cerebral Palsy Alliance Reserach Institute, Dr Iona Novak and published in Source Kids 12 December 2019, this article brings you the latest on how to maximise child development through neuroplasticity. 

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