Emma’s earliest memories of her son Owen bring a sense of helplessness as she recalls endless days and nights in the Neonatal ICU.

“It was all in Owen’s and the doctor’s hands,” Emma explains. “But Owen kept fighting and proving he was strong. That’s when we started calling him ‘Mighty Owen’.”

Owen was born at 32 weeks, weighing a tiny 880 grams. As a result of his poor start to life, Owen suffered brain damage that resulted in multiple disabilities.

“Unfortunately, being naïve is a good thing,” Emma says. “With the endless appointments, specialist therapy sessions, psychologist sessions … the day-to-day caring just becomes the norm.”

Looking back at the start of the journey, Emma says that she’s not sure she could have kept going if she knew then what the family was facing. “I remember feeling so overwhelmed by things that need to be done, and the guilt of allowing myself to have a break,” she says.

“You would do anything for your children and at times you forget that you are doing so much. I think sometimes as a carer it is the norm to put yourself last,” she says. “You feel guilty doing things for yourself. It’s almost like you need to win a night off to feel ok about it.”

That’s why she is glad to have support from organisations such as Carers Victoria. “It’s just nice to know that you are not alone and feel that you are recognised for the role you play in caring for someone.”

Although hers is a huge role, caring it is not one that Emma does alone. Her husband and eldest son Liam also care for Owen, and Liam recently won a Young Carer Scholarship award from Carers Victoria for his work as a young carer.

“Liam doesn’t realise the role he plays in his brother’s development and in helping him to get things done,” Emma says. “That comes naturally for Liam.”

The family also wrote a picture book about their experiences. “It was a way for us to tell our own story,” Emma says. “It especially helped Liam, who is two years older than Owen, to understand his little brother. Writing this story of Mighty Owen also helps Owen to understand the journey he is on.”

Find out more about The Adventures of Mighty Owen.

Read Liam’s story here.