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Defence Community Organisation

For ADF members and their families

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The Not-so-simple life

Nov 29 2018

Kirsten Pini was born and raised in the small country town of Mulwala, New South Wales, where life was relatively simple.

Husband Mat’s career in the Royal Australian Air Force, however, has seen their family posted across the country, which presents a number of challenges for families when you have kids with special needs.

The family’s eldest son, Max, has the most complex medical conditions including a rare condition called heterotaxy that Kirstin said most people have never heard of and presents differently in each person.

“In Max’s case, he was born with no spleen, a central liver, mal-rotation of the bowel, plus hypoparathyrodism and a complex and terminal cardiac condition,” said Kirsten.

“Initially he wasn’t supposed to survive birth, and his first open heart surgery was at nine days old. In short, we are very lucky to still have him with us.”

Kirsten is very busy looking after Max, along with her two younger sons, Patrick and Jaxson who also have special needs, but she has managed to find time to volunteer as the coordinator for the Amberley Defence Special Needs Support Group (DSNSG).

“Having dependants that have these additional needs creates a very different experience of the Defence lifestyle, and it often gets overlooked,” Kirsten said.

“I wanted to help other families going through what we have and help draw attention to the challenges we all face.

“There is always more to prepare for us to move to a new location. Schools are more challenging to locate and enrol in, and the adjustment period can take longer.”

The family has even fostered RAAF military working dog puppies.

“We loved being part of the foster program. It was so rewarding for us and we all really enjoyed training the pups! The kids loved the energy of the pups and even helped with their training,” said Kirsten.

While not a RAAF pup, the family is soon to get a Labrador called Thor of their own after their old dog Mika had to retire.

“She woke us up in the middle of the night once when Max’s oxygen levels dropped so low that he almost died and, since then, she felt she always had to be ‘on alert’,” said Kirsten.

“Mika is so protective of our little family, she couldn’t relax, so she retired to my parents’ property in country Victoria and just visits us in short bursts.”

Kirsten said the biggest challenge the family has is being posted away from Max’s main treating hospital and having to travel back there for appointments or surgeries. The family is very organised and have their own routines of handling any situation that arises.

“Families dealing with these additional needs are very tough and can handle so much. There just has to be a little more flexibility and understanding, especially to help them feel included in the Defence lifestyle,” said Kirsten.

Kirsten has built a close support network with other Defence families in each posting location.

“It’s good to know they are there if they need them, like the night Jaxson and Patrick were asleep and Max wasn’t quite right,” said Kirsten.

“While not urgent enough for an ambulance, we needed to go to hospital, so we asked one of Mat’s workmates. It was a huge help not having to wake up everyone to head in like we have done so many times before!

“As a family we are pretty low-key and mostly home or hospital-based due to Max’s medical conditions, but we try to get out and explore each area we are posted to.

“I don’t think we could pick a favourite location. We loved the beaches in Newcastle and the community spirit and the amazing RAAF museum in Point Cook but they are all amazing in their own way!”

Kirsten Pini was born and raised in the small country town of Mulwala, New South Wales, where life was relatively simple.

The Not-so-simple life