This story was collected at our Fremantle backyard and is told by Sandi Parsons. Sandi shares her journey of being diagnosed with cystic fibrosis while also becoming a mother.
Backstories 2022 is a multi-sited storytelling festival located in suburbs of across Perth and regional Western Australia. In 2022, Backstories occurred in locations such as Geraldton, Kununurra, Bunbury, Margaret River and Lesmurdie.
Backstories 2022 Fremantle was made possible with funding from Lotterywest, Department of Local Government, Sport and Cultural Industries, City of Fremantle and Centre for Stories Founders Circle.
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Copyright © 2023 Sandi Parsons
Photo by Sophie Minissale
This story and corresponding images have been licensed to the Centre for Stories by the Storyteller. For reproduction and distribution of this story/image please contact the Centre for Stories.
View Story Transcript
SP: Two thin blue lines on the pregnancy test. Wanting to have a child and actually being able to have a child are two separate things. And until those two little lines appeared like magic, I didn’t know if I could have a child. My gran was the first person I told. I certainly hope not, she said. My mom wasn’t much better.
Well, I can’t say I’m pleased, she said. But they were coming from a place of fear. In 1995, the only woman we knew with cystic fibrosis who had successfully carried a pregnancy died when her son was only a few years old. As my pregnancy progressed and then Jaron was born successfully, everyone believed a collective sigh of relief, as if the Grim Reaper had a strong past without even glancing sideways at me.
But I knew better. There was a different set of statistics for this one, and they said that women with cystic fibrosis, they dont survive the toddling years. But I like to battle statistics. So I was going to give it a good crack. I managed to make it until John was three before I needed IV antibiotics and I had them at home.
A year later, I needed a second set. After two weeks, my specialist said to me, You’re not quite back to your baseline. I think you should do it for another week. I wave my hand breezily. It’s only a hundred mils. It doesn’t matter. I got plenty of mils. We’re good. What I really meant was having an IV line in my arm is hampering my parenting style, and I have to go back to my baby.
But that night, I started thinking my parenting style needed to change. I was in uncharted territory, flying blind. I had to stop living every day as if I was on an airplane that was about to go into a nice nosedive. In the event of a loss of cabin pressure. Oxygen masks will fall from the ceiling. Please attend to your own before attending to the needs of the others.
But this notion of self first is very against the role of motherhood. It was a hard decision to make, but I became that mother, the one everyone talks about. I’m that mother who co-slept with her toddler, I’m that mother who sat her child in front of the TV every day so he could eat breakfast. I’m that mother who filled my son’s lunchbox with prepackaged foods because I needed every parenting shortcut I could get.
I needed to steal every minute possible. So I had time for my health and time to rest a little longer on the bad days. It was a strategy that served me really well until Jan 2010. One night I went to bed feeling fine. I wake up in the morning, middle of the night, two-ish, and as I emerged from my dream, I thought that someone was spraying the back of my throat with a water pistol.
It’s a bit odd, but, you know. So are dreams. Thought I would get go get a drink because I couldn’t stop coughing. And halfway to the fridge, I thought there was something different about this cough. Something wrong. And as I opened the fridge door, I could say my hands were covered in blood. I was having a massive lung bleed.
So I went back to bed. I coughed up 400 mils of blood about a Pepsi can size. Then I cleaned up. In the morning I had another bleed, but this time I was prepared because Jaron couldn’t see this, and I had to cut beside my bed so I could discreetly spit blood as he got ready for school, I got Jaron ready for school.
I drove myself to the hospital. Don’t try that at home. It’s not a good idea. And I was full of confidence that my medical chain was going to let me come home on two weeks of antibiotics, and we would be apples. And they said no. It was the first time I’d been hospitalized since Jaron had been born. Not bad odds for a woman with cystic fibrosis.
And then I started to think that night, maybe stolen minutes are not going to be enough because maybe the hourglass is starting to run out of time, trickling a little bit faster than what I’d hoped it would. Over the next four years, my health declined significantly because that bleed that was the beginning of the end. I was progressively having more and more I.V. antibiotics at home.
Jaron was having to become more and more independent. When we did the shopping. He would run in amongst the aisles fetching things for me as I slowly potted behind him. He would carry my heavy bags. He would carry my library books. And on the times where I was being a mum-taxi and driving Jaron to and from places, if I had a bleed in the car, he’d hold my cup while I spat into it.
2009 crashed into me like a tidal wave. I contracted the flu not once, not twice, but three separate times. My lung function plummeted from 80 down to 40.
It was a very hard year. But 2010 was going to be better. Except what I didn’t know is the sand was nearly out of the hourglass by then. 2010 started okay, but by the time winter came, I was in the hospital on oxygen and words that I thought would never apply to me abruptly inserted themselves into my vocabulary.
Respiratory failure, transplant list. How do you tell your teenage son that you’re dying? There’s no book that shows you how to do that. But I didn’t need one because even though I lived alongside C.F, with C.F, Jaron lived alongside it. He knew. He knew that I was battling harder and harder. He knew that I was losing the war.
And he knew that if donated lungs were not offered in time, I was going to die. Around this time we’d always had vague offers from his dad that he could go and move to Sydney and spend Year 11 and 12 with his dad. It also became real. Jaron could move to Sydney. He could do year 10, year 11 and 12.
It was a teenage boy’s dream. Sydney, where Comic-Con and all the other great events that happen in Australia, and not sleepy little Perth. Plus he would have his brothers and he could spend more time with his dad. What boy wouldn’t want to go, but his mum was dying. If I’d asked him, he would have stayed. So I had to choose my words very carefully because this was an awesome opportunity for Jaron.
He could go. He could do all those things. And the truth was, I didn’t want him to have to watch me die. I watched my friends die from cystic fibrosis. It’s a painful, slow, degrading way to die. It is a stripping away of self of independence. But if he went to Sydney, he could be there. He could start his new life.
He could be settled. And if donated lungs did not come in time, I knew he would be safe. So I said, I think this is a pretty good deal, sunshine. I think you’re really going to enjoy it there.
It doesn’t matter where you are. Whether you’re here, whether you’re there, donated lungs will either be offered to me or they won’t. Where you are, it doesn’t change anything. I think you should go. This time, I put the oxygen mask on Jaron first. Thank you.