Susan Wallis from Woonona finds it hard to reconcile that for one of her daughters she gets to be “just a mother”, but for the other she’s considered a “carer”.
Susan’s eldest daughter, Gracie, 12, experienced a medical emergency at birth resulting in oxygen deprivation related injuries. She is non-verbal and uses a wheelchair, requiring full support for all of her daily living.
“There is a suggestion that with caring comes burden, or struggle,” Susan said. “And while ours isn't a regular parenting or family experience, it is our ‘normal’.
It is a gift to be her parent, and for Sophie (9), she also thinks Gracie is the best sister she could possibly have.”
It is only recently as Gracie has grown, making the extra support she needs with care tasks more apparent, that Susan accepted the title of carer.
She struggles with the assumptions that come with it.
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“Society sees caring as a burden, and I'm often told how inspiring I am for doing what I do,” she said. “I don't need compliments for loving and caring for either of my children. OK, the volunteer work, lobbying and the fundraising I used to do might be above and beyond. It’s pleasant to be acknowledged for that, but loving my children is the easiest thing I've ever done.”
Gracie has enriched her family’s lives. “I'm a better person for being her mother. Her father is more patient and understanding and has a greater desire to help others. Sophie is a better human too,” she said.
Susan’s volunteering has given her the opportunity to make an impact and help others.
“A dear friend once told me that I have a responsibility to fight for people who can't fight for themselves, and it is this fact that motivates me.”
Susan and her family are waiting on the NDIS to become the scheme they campaigned for.
“No doubt some people are getting great outcomes and it's changing lives for the better, but not for all. Too many people are still fighting for basic services, including me.”
There are other challenges, but the benefits outweigh every one. “Gracie is the perfect example of all that is good and pure and why we should value everyone's differences.”