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‘Life is not a dress rehearsal’: Greek Sydney mother shares journey of raising son with rare condition

Mom and son in a 2019 photo - (R) Alexander in intensive care after a surgery. Source: Jennifer Brankin

Raising a child as a single mother is not a walk in the park. What’s more when a medical condition creates high care needs. Ιn sharing her lived experience, Jennifer Brankin hopes to give prospective parents a realistic picture of what it’s like raising a child with disability beyond the ‘fear mongering’.

At 35 weeks pregnant a routine scan ended up with her baby being diagnosed with a rare disorder.

The news were hard to digest and the doctors didn’t make it much easier telling her “that this wouldn’t end well”.

Thankfully, they were wrong.

Fast forward to today, Ms Brankin is a proud single mother of 6-year-old Alexander.

Alexander is living with Joubert syndrome, a condition with wide-ranging impact on his physical and cognitive development. 

Alexander on table
"My dining table was more like a medical clinic table", says Ms Brankin recalling the first few months of Alexander's life.
Jennifer Brankin

“I do feel a bit like a nurse at times, with all the medication and devices around, there’s always something to do related to his health.

“Look, I’m not saying it’s easy, it’s not. But it’s also not impossible. It was more about me shifting my mindset and adapting.

"I can still do all the things I want to do. I can take him for holidays in the outback for example, everything just requires a bit more support on my end, a bit more preparation."

Alexander at the zoo - Alexander with his mother in Mexico
Alexander at his fist visit to the zoo - (R) During their trip to the US, mother and son drove and crossed into the Mexican border
Jennifer Brankin

Mother and son have spent many nights in hospital since Alexander’s birth. But his first stay in intensive care was without doubt the toughest, with doctors unsure whether the newborn would survive.

Ms Brankin, raised in a Greek Orthodox family, decided to have him christened while in hospital.

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“I found myself feeling guilt due to the religion I was raised with and did it out of respect to my father and my godfather,” she says.

Alexander's baptism
Alexander's christening took place in the hospital as doctors were unsure whether he would survive.
Jennifer Brankin

Alexander was on oxygen support throughout the baptism, but her family had not been openly briefed about the state of his health.

“They were about to travel to Greece for my brother’s wedding, so I wanted to spare them the worry.”

Weeks in hospital continued adding up with Ms Brankin finally able to take her son home after five and a half months.

It was that point, she recalls, that she started realising not just the consequences of the decision to separate from Alexander’s father, but also that her choice became an object of criticism.

“[…]this shame that we face culturally and things I faced as a single mother, like the notion that being a woman separated by her partner and raising a child by on her own, what’s more a child with disabilities, is seen like the road to calvary.”

Being a photojournalist, Ms Brankin started documenting her life with Alexander from day one and is now ready to share this journey with the world in a film titled Expecting the Unexpected.

Newborn Alexander with mum
Born at 1.6 kg, Alexander spent134 nights in the NICU
expectingtheunexpectedfilm.com/Jennifer Brankin

She says she hopes it can serve as a visual reference for prospective parents, one she sensed missing when she asked the doctors what her life with Alexander could be like.

“I felt that the communication that was given to me was doom and gloom.

There was no space for possibility that you could still have a wonderful life with a child with disability. I felt it was very strongly slanted towards letting Alexander go and towards looking at him as though he’s a burden.

“I just wanted to communicate this story for future families that receive bad news about their child’s condition and perhaps this film can work as a way to help them in making their decision.”

Alexander close up younger and at therapy
Alexander had a Naso-Gastric Tube that went down to his stomach for feeding, for the first 18 months of his life (R) at his weekly therapy session.
Jennifer Brankin

Worrying about what the future holds for Alexander is a line of thinking Ms Brankin says she doesn’t entertain.

Driven not by denial, but conscious choice.

“I am able to have a great life with Alexander.

For me it’s about letting go of expectations and rather than focusing on ‘what if I lose him’, ‘what if he dies’, it’s more like ‘This life is not a dress rehearsal’.

“So if one day I happen to lose Alexander I can look back and say we had the best little life together I gave him the best little life and created all these memories together."

Updates and further information on the film can be found here

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