The judgements started the moment I announced I was pregnant. They came from family and friends. They came from a place of concern and fear.
I can’t say I’m pleased.
You’re digging your own grave.
What a selfish thing to do.
My pregnancy progressed without incident, and when Jarryn was born a collective sigh of relief descended. The end of my pregnancy seen as a sign that the Grim Reaper had strolled past without glancing sideways at me.
But I knew better.
In 1995 postnatal statistics indicated women with Cystic Fibrosis (CF) were unlikely to survive the toddler years. These statistics showed that looking after a child came with a cost. The cost of time. Time that was already in short supply with days already consumed by the management of a complicated medical condition.
Statistics are numbers that don’t show everything. There is no chart to measure the connection between a mother and child. Numbers don’t understand emotions. Numbers can’t explain willpower or the territorial mothering instinct that ignited the moment I held my son for the first time. My urge to nurture and protect my son continued to grow, and it required an abundance of willpower to set my mothering instincts aside.
To survive, I needed to treat every day as if I was sitting on an aeroplane in a nosedive.
In the event of a sudden loss of cabin pressure, oxygen masks will drop from the ceiling. Secure your own mask before attending to others.
As a mother, this notion of “self first” feels at odds with the concept of motherhood where sacrifice is the ultimate virtue. My top priority had to be myself. The alternative was a world where my son would grow up motherless.
So I became “that mother”. The one everyone passes judgement on.
I’m that mother who let her toddler co-sleep with her.
I’m that mother who stuck her child in front of the TV to eat breakfast every day.
I’m that mother who filled my child’s lunchbox with prepackaged foods.
If there was a parenting short-cut, I grabbed it with both hands.
I needed every extra minute I could find because stolen minutes allowed me to do my physio, or rest a little longer on bad days.
More importantly, using those stolen minutes from my “questionable” parenting practices to maintain my health allowed me to spend my energy doing the things that mattered. The stuff that actually counts—spending time with Jarryn as he grew and explored the world. To read to him, to play games together and help shape him into the person he is today.
Those stolen minutes allowed me to continue to be a mother.
Until stolen minutes were no longer enough.
In 2009 I started to lose the war. Battling CF demanded more and more of my time, as if it’s sole purpose was to suck the joy from my world. Within 18 months, my lung function plummeted from a relatively stable 80% down to 30%. My lungs were severely compromised. Words I thought would never apply to me abruptly inserted themselves into my vocabulary.
There is no instruction manual for how to tell your teenage son you are dying, but even if there was, I didn’t need to consult it. While I lived with CF, Jarryn lived alongside it. He was aware that CF was digging deep into its extended arsenal of weapons and attacking me on all fronts. More importantly, he knew that there were two possible outcomes — either an offer of donated lungs would grant me a reprieve or I would die.
Endstage respiratory failure is a slow, degrading way to die. A stripping away of self, and of independence. A reliance on others. Slowly the roles began to reverse, and Jarryn started to help with simple tasks. I no longer had the breath to read to Jarryn; instead, he would lug books home from the library for me. Most of his “jobs” were seemingly innocuous, but they were heading directly down a one-way path.
Moving to NSW to live with his Dad provided a fork in the path. An alternative ending, brimming with the promise of a different future. It was a massive decision for a teenager to make. Jarryn was conflicted, he wanted to go, but he also felt a sense of responsibility to stay at my side.
Managing my disease was not Jarryn’s responsibility. I knew that if I asked, Jarryn would have chosen to stay. There was only one logical choice — I told him the opportunity was too good to refuse.
This time, I put the oxygen mask on Jarryn first.
Sandi Parsons lives and breathes stories, as a reader, writer and storyteller. She is passionate about engaging readers and diversity in storytelling. Sandi is a Children’s Book Council of Australia Book of the Year Award Judge 2020, 2021 (Early Childhood category). Sandi’s creative nonfiction has been published in MiNDFOOD and Frankie. She is a contributor in the Growing Up Disabled in Australia anthology. She lives in Western Australia with her favourite husband, some problem puppies and many teetering stacks of books.