For over 10 years I have parked the passing of my mother to one side refusing to speak or think about the 3 years leading up to her death. This in turn closed any reflections about her, even the good. Over the past 12 months, I have now revisited the trauma, hurt and memories and in turn found a personal responsibility to help others who share in this journey.
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This is her story,
Edna Swart was only 14 years old when her mother, Sandra, tragically suffered a stroke thousands of feet up in the air, on a flight to see her family in South Africa.
Nobody on the aircraft, including Sandra, unfortunately, picked up that she had a stroke. While she told Edna's grandfather when she landed that she wasn't feeling well, she thought that sleeping it off was the best way forward.
After a few days of lying-in bed, it dawned on Sandra that her symptoms were not getting better. A local doctor in South Africa ran a few tests and determined that she had, in fact, suffered a stroke.
Edna, who was scheduled to fly to South Africa two weeks after her mum, distinctly remembers walking into the local hospital and seeing her mother in bed.
"I couldn't recognise her anymore, she had been ignored by the hospital staff and was practically skin and bone, weighing a fraction of her regular weight at 39 kilograms, and had lost her speech, while also being paralysed."
Outraged at the negligence from the staff at the hospital in South Africa, Edna's dad decided to immediately relocate her to New Zealand.
Back in New Zealand, Edna remembers that Sandra had to relearn everything from scratch - from walking, speaking and even swallowing.
During her first year in rehab, Sandra had to have a tracheostomy procedure on her neck to swallow food and towed around a colostomy bag owing to her paralysis.
After about a year in rehab, Sandra could get rid of the tracheostomy tube and the colostomy bag, but she still had to be in a wheelchair constantly.
"The truth is, after that first time she left for South Africa, my mum never came home again. Her rehab took place in hospitals and retirement homes. As a young teenager, this was the hardest thing for me to reconcile," Edna says in a typically honest fashion.
"These things really affected me as a teenage girl. I resented that I couldn't just go have dinner outside, or shopping with my mum, or getting our nails done together, or anything normal that all my friends were enjoying", Edna laments.
About two years after the initial stroke, Sandra had started walking again, albeit with the use of a walker, was eating properly again and her speech had also returned to about 70%. Edna clearly remembers the letters her mum was able to write again, as her fingers got back their dexterity.
With Edna's loyal dad consumed by his wife's rehabilitation and wanting her to get all of the support that she needed, Edna says he never missed a day visiting Sandra, wherever she was, in the three years of rehab.
Having to sacrifice time with his children, however, had a profound effect on Edna and her two brothers.
"We ended up kind of having to fend for ourselves and had to grow up faster to become independent."
Edna connects this vacuum in her life to a rebellious phase she went through as a 15-year-old, where she took the drastic step of running away from home.
"Nobody was home, and I felt like nobody understood me, I just had an insurmountable rage against everything around me, I had to get away, and anywhere would do," says Edna reflectively.
"This is how stroke affects families and children, I believe. When a parent is suddenly missing you start looking for things that will fill the hole in your life."
By the time she was 17, however, Edna realised that no matter how badly she needed her mum, her mum needed her much, much more.
Unfortunately, this realisation came too late, as this was the final year of Sandra's life.
A combination of being a life-long diabetic, battles with depression and the effects of the stroke finally caught up with Sandra and deteriorated her health in a matter of a few months.
Around this time, Edna received a harrowing phone call from her dad. "I don't think Sandra wants to be here anymore, she says she's very tired," he said gravely.
Back at the care facility in New Plymouth where Sandra was staying, she suffered a cardiac arrest and was put on life support.
A devout Christian man, Edna says that the decision to take his wife off life support was the toughest decision in her dad's life. On October 8, 2007, the machines were turned off, and Sandra Swart passed away at only 52 years of age.
"Would my mother's life have been better if the stroke was picked up earlier and she had received good support from the beginning? I think yes, almost definitely," says Edna.
Today, Edna's brothers are happily married with loving families, while Edna is also thrilled that her dad has also remarried a decade ago, after years of heartbreak.
Edna channelled her own heartbreak into her career, getting a finance degree and working for years in banking, before starting her own swimwear and skincare label
"A lot of the trauma, to be honest, has blacked out from my brain, and I haven't spoken about this stuff for years. But I want to talk about it now because it's normal, and thousands of families in New Zealand go through this every year," says Edna.