Sonia's story
So I care for Darcy. He is 11 and he had airway surgery when he was two months old and he has intellectual delays. He needs help with everything. Accessing therapy for Darcy in a rural area was really hard. I had to build a path and to find what was out there and what was available and it was very limited.
My experience with Carer Gateway, they helped us find a pathway for Darcy, for his siblings and me. They are definitely giving 150%. Living in a rural town, Carer Gateway has helped me overcome the isolation by offering a variety of different avenues to link up with support, other families, other carers.
My goals for the future is that Darcy gains more independence for himself, that I can eventually go back to work. That we as a family can just have some more family time that's not running to hospitals and appointments. An unpaid carer needs to know it's not easy. And if you knock on a door and it's not answered, that you knock on the next door.
Darcy is my little 11-year-old brother, and me and my two other brothers, Jack and Patty, all care for Darcy. We help mum with all the things he needs. We feed him, we dress him, we bathe him. We do all the things that mum sometimes couldn't do if she's busy with other things.
Ever since Darcy was born, I've had a great relationship with him. As him being the youngest, I'm like the only girl in the family, like, as of the siblings. So me and my brothers as young carers, we get, a lot of things from Carer Gateway. It's also helped me build a sense of like responsibility outside of the world, like, I talk to people, I help people out when they need a hand, like, just community members.
So, yeah, I think that's also a great thing that I've got from this. It helps me explore new friendships with other people. We get to go on camps, I went on one last year. I met, a good group of people. We all met personally, spent about a week together. It was really good fun, and I still keep in contact with them today.
Meet Sonia
Sonia lives with her four children in a village in the Central West region of NSW. She and her three older children provide full-time care for her youngest son, Darcy. Sonia's husband drives long-haul trucks, so he is away often.
At two months old, Darcy was experiencing airway problems that affected his ability to thrive. His condition required surgery, which unfortunately led to pneumonia, respiratory illness and more surgeries. As a result, Darcy faces challenges with his dexterity and fine motor skills. He also has limited vision and a language delay.
Sonia, with the support of her children, helps Darcy daily with eating, bathing and dressing. They also help him attend therapy appointments and provide emotional and medical support.
A few years after Darcy’s birth, Sonia was in a head-on car accident that has left her needing two knee replacements and a hip replacement. She suffers from chronic pain and finds it hard to fit in visits to the pain specialist.
A community of care for the family
Through Carer Gateway, Sonia connected with her care community. She makes time to regularly meet in Orange, NSW with other mums in similar situations for social visits and workshops together.
'The people you meet and the community you create is one of the best things about being a carer,” says Sonia. “The people I’ve gathered on this journey are friends for life and we have life-long connections.'
'The folks at Carer Gateway reach out to help regularly and, where they can help, they really give it 150%.'
Over the past few years, Sonia has watched the growth of Carer Gateway.
Through Carer Gateway, two of her children were supported to go to camp during school holidays. And now, as they help Sonia manage Darcy’s daily care, they’re recognised as Young Carers through Carer Gateway. The kids have a Carer Gateway peer support worker who helps them access tutoring and facilitates the purchase of school supplies. They’ve also received support through the Young Carer Bursary Program, which helps them with their school tuition.
'Carer Gateway reached out and offered help from the beginning,' says Sonia. 'I didn’t have time for myself. I was managing chronic pain, but I had to keep soldiering on and keep going. I have to be a mum. Carer Gateway services are helping us to get our balance back and make it easier for the whole family.'
Paying it forward
Sonia had to do a lot of self-advocating in the beginning.
Getting therapy for Darcy in their rural area was the biggest barrier in the first few years of his life. Now, with Carer Gateway and her established support system, Sonia enjoys being able to help and support parents who are new to providing extra care.
'There was no pathway. I had to build the path myself as I walked it. It didn’t exist before.'
'I want to pay if forward to younger mums who may be having experiences like mine,' says Sonia. 'It’s not easy, it’s hard work. They need to know that if a door gets shut, you have to just knock on the next one.'
