This past weekend, I had the honour to be asked to speak at a Mother’s Day fundraising event for Hummingbird House, Queensland’s only children’s hospice. This is my talk, which seems even more relevant after the start to this week involved yet more “adulting”:
Adulting. Have you heard that word before? Seen it on Facebook? If, like my husband, you’ve never heard of it, it means the practice of behaving as a responsible adult.
When did you first feel like an adult?
For me, I remember the exact date, time and circumstances.
It was on the 30thof September 2011 at around 2 o’clock in the afternoon.
I was working from home when the nanny came into my office, carrying my six-month-old daughter and said “Miss Z is acting funny and I’m not sure what to do”.
I remember very clearly taking Z in my arms and noticing how she seemed to be having little tremors and her breathing was rapid and strangely rhythmic.
I had no idea what was wrong with her. I had no idea what to do. The only other adult at home was the nanny, and she was looking to me for direction.
“I think we need to call an ambulance,” I said.
The nanny looked shocked. “You mean like 000?”
I was uncertain what to do. After all, I had never had to call an ambulance in my life. As far as I knew, you only called an ambulance when someone had a heart attack or was hit by a car. But calling one because your baby was acting funny? Would the paramedics tell me off for over-reacting? Would the 000 operator even send an ambulance?
I had to be the adult, to make the decision. We called 000. The paramedics did not tell me off. Probably because they were too busy saving Z’s life. The funny behaviour was a status seizure that took over an hour and several powerful drugs to stop. During the hour or more that it took the paramedics and then the Emergency Room doctors to end the seizure, Z stopped breathing twice. She had to be intubated and spent nearly a week in intensive care.
In many ways Miss Z’s story, and my story as her mother, started on that day.
She had been a difficult baby and there were signs, assessments and concerns that came before that horrible day, but it was September 30th, when my husband and I stood in the Resus area of the Emergency Department and watched 18 doctors and nurses working on Miss Z that the seriousness of the situation and the frightening possibility of what lay ahead became clear.
And it was from that day onward that we have had to make difficult, grown-up decisions about our daughter on a regular basis.
Miss Z makes me “adult”.
Her long shopping list of medical issues – uncontrolled seizures, aspiration, fragile bones and severe scoliosis to name just a few – eventually led to her being diagnosed as palliative. Her condition is life limiting and we don’t know how much time we will have with her.
This doesn’t mean that I have to behave like an adult with Z all the time – as she and her sister will attest. After all, one of Z’s favourite things at the moment is a “Greatest Showman” singalong – and you can’t act like an adult while you’re singing along with Hugh Jackman.
And it doesn’t mean that our life is without joy. Miss Z, and her sister Vegemite, are constant sources of joy and laughter and just plain goofiness in my life. Z loves her collection of stuffed bunnies, cuddles, listening to ABBA and hanging out with Vegemite. She has a wicked sense of humour which she is only beginning to show us as she learns to use a communication book. And she is known for her wild and crazy hair – which she hates to have brushed. Watching Miss Z and Vegemite enjoy each other is my greatest source of joy.
But at the same time, as the mother of a child with a life limiting condition, I always need to be ready to take difficult decisions – Will this surgery improve her quality of life? Is she sick? Should I call an ambulance? (you’ll be pleased to know I’m much quicker to call one these days).
And caring for Z is a constant and never-ending job. It includes everything from the basics like changing her nappy, dressing her and trimming her fingernails to drawing up her medication and making sure she receives it at the right time every morning, afternoon and evening.
I’m often up in the middle of the night, helping her to breathe by suctioning her and repositioning her because she can’t roll over in bed by herself. I watch for seizures and give her emergency medication if a seizure runs too long. I take her temperature and monitor her SATS levels and respiration rate when she is unwell.
Caring for Z requires constant adulting.
One of the most important things I’ve learned on this journey is that you can’t do it on your own. Caring for a medically fragile child is hard, relentless and exhausting, and goes well beyond just behaving like a responsible adult.
If anything, being a responsible adult means asking for help.
It was something that took me some time to learn. I wanted to do it all. After all, I’m her mother – it’s my job. I know Z better than anyone else. And I feel extremely protective of her.
But I can’t do it all. Not and remain mentally and physically healthy. And being a responsible adult means knowing that I need to stay strong and healthy to make those hard decisions.
This is why Hummingbird House is such a blessing for our family.
Staying at Hummingbird House as a family takes some of that constant weight of adult responsibility of caring for Miss Z off our shoulders. It allows us to spend time enjoying her, rather than caring for her.
It also lets us enjoy some time on our own or giving special attention to Vegemite. And – equally importantly – it gives Z a taste of independence – a place where she can have fun and a sleepover, without having her mum or dad always there.
That is why, this Mother’s Day, I’m happy to be able to share our story and thank Hummingbird House – and all of Z’s nurses, carers and support workers – who have become an important and valued part of our lives.
And who give me a break from adulting.