I raised a profoundly disabled child — this is what it’s really like
Chanté was born with a unique spectrum of disabilities unseen by the medical fraternity before, yet there was so much more to her.
Opinion by Tansy Mayhew
Chanté was basically blind.
Born with multiple congenital defects, she couldn’t walk, speak or eat.
There were times when people would stare at her, barely containing their distaste. Older women would purse their lips and shake their heads, scolding me for taking care of Chanté in ways they didn’t understand.
As her mum, I saw a different side.
Chanté could boss. Expertly. She invented her own language, a drama queen coupling of body language and intonation.
She pulled tricks, poker-faced, working my last nerve with intense amusement. Offered me wobbly-grin comfort after painful procedures.
Giggled helplessly at Peppa Pig, Hairy Maclary and Missy Elliott. Sailed in, chin up, proud as punch after she went to town with her Best Friend (her respite worker) without me.
Chanté lived for 11 years and two months. I raised her alone during that time as her full-time carer. Despite her 17-odd surgeries, and frequent bus trips to “her” hospital — Sydney Children’s Hospital in Randwick — Chanté lived her life fully and passionately.
I adored her, and so did her adopted aunties, my friends, her carers. One flash of that flip-top head grin, one flutter of those ridiculously long eyelashes and she had me saying: “Yes, princess. No, princess.”
She gave me passionate cuddles, and the rarest telling-off of my life when I tried to swap out her pink curtains for yellow. I melted when she said, “nahhnahh” (mummy) with the world of love in it.
They can’t see the life within
This is the magic that people miss. They see someone in a wheelchair, perhaps dribbling onto their already stained clothes, and that’s it. That’s the box. Neatly labelled. They can’t see the life within.
Some people who would bluntly ask, “what’s wrong with her?” or “where did you get her?” — always operating under the assumption that Chanté wouldn’t know what they were saying.
In a way, I found it comforting to think there were such ignorant people out there. Even though I’ve never loved anybody like I loved Chanté, I wouldn’t wish her struggle on anyone.
In our own small way, Chanté and I both fought to change peoples’ perceptions. A person is not a disability. A person is a person.
Little things. I made sure she was always dressed beautifully, like the princess she was. Carrying four or five outfits everywhere we went, so I could change her when she vomited or pooped all over herself, was a negligible price to pay.
Little things. I interpreted for her until people learned to speak “Chanté”. I made sure what I said was funny, intelligent and that her character was prominent in any exchange. That’s who she was.
Little things. I encouraged curiosity. Children ask the most confronting questions but they accept your answers wholeheartedly. I thought maybe they’d treat the next disabled person differently.
Little things. We were a popular case study for paediatric exams each year because Chanté had a list of congenital defects as long as your arm. We hoped to make disabled kids’ lives relatable and improve their medical care.
Sleepless nights, hospital life
It’s not easy, being a single mum with a kid like Chanté. The years of sleepless nights, the hospital living, the suffering, the “one step forward, five steps back” effort to teach skills that will give autonomy, the complete surrender of your own life so a child can have a degree of quality in theirs.
No-one could tell me how long Chanté would live. Her life could have been fleeting. As she kept improving through early childhood, the only way forward was to assume her life would be longer than mine.
But things started to go downhill when she was nine. She had an epileptic fit for five hours straight — and when she came out of it, she was different. It was the “event” that many profoundly disabled kids go through, one that marks the beginning of a downward spiral and, perhaps, the end. She was left weaker, jerkier in her movements.
When I met the ICU specialist after that, he gave me “the talk”.
He had six volumes of Chanté’s records in front of him and he had obviously looked at them and thought, “well, just let this poor kid go”. He was kind and gentle and concerned for Chanté.
But she was only nine. She had always fought so hard and I felt she wasn’t ready — but I also knew he couldn’t possibly see what I got to see. I thought it must be a terrible job, having to tell parents they need to let their kids die.
So I made up a document for him, and put pictures of Chanté in it were she was out of hospital: in a swing and laughing her head off; walking around in the wind, all excited and breathing deeply in-and-out the way she used to. I wanted him to understand my experience of loving her life.
The paediatrician told me later that she saw the specialist look at my pictures for a long time; he said it profoundly changed his perspective of his job.
There is an endless learning curve in caring for a child like Chanté. You constantly bang your heart against the miserable defeat of not being able to protect your child. You try to compartmentalise distress so you can enjoy the better times together. But sometimes everything you try isn’t enough.
Saying goodbye
Two years after the five-hour seizure, she died.
Now that she is gone, I miss her every moment of every day.
The damp sweetness of her body on mine, those curls tickling my chin, the smell of her satiny skin, the mischief in her eyes and the way her hands would twist together to “dance flamenco” or “make angels”.
I miss her throwing me out of her room at night, only to roll over and beam a welcome when I’d open the door each morning.
I miss her little brown fists banging the arms of her chair in excitement when the wind picked up. I miss her singing “Ain’t no Sunshine” with me, off-beat and out-of-tune. I miss being the Two Musketeers.
What I don’t miss is the exhaustion. I don’t miss the helplessness. And I certainly don’t miss the nappies.
But she is still here, in memory, an indelible print on my heart. I am left with a million stories, awe for an amazing human being, relief that she doesn’t have to suffer this anymore — and, I confess, a strong affection for pink.
About Chanté
Chanté was born on March 10, 2003 with a unique spectrum of disabilities unseen by the medical fraternity before.
She was blind, had cerebral palsy, epilepsy, severe sleep apnoea, global developmental delay and respiratory, heart, kidney, bladder, digestive and other internal organ abnormalities.
She had over 17 surgeries; 10 of them were corrective, the others investigative. She was hospitalised hundreds of times with painful, life-threatening kidney infections. Her left hip dislocated in 2011 due to cerebral palsy.
She passed away on May 27, 2014 from respiration pneumonia at “her hospital”, Sydney Children’s, Randwick.
