As you will read in this week’s Catholic Weekly, NSW Premier Chris Minns chose to ignore the overwhelming response to an NSW parliamentary inquiry and instead threw his weight behind the so-called equality bill. What’s more, the Premier chose the setting of a western Sydney preschool to make the announcement.
In an ordinary week, I would have used this column to excoriate him for using young children and their mothers—the two groups put most at risk by this bill—as extras for the televised announcement. It was one of the most disappointing things I have seen from a NSW Premier, and that’s saying something.
But this is not an ordinary week.
As much as I would like to focus on politics, my mind and my heart are with three-year-old Matthew this week.
I have written about Matthew before; but at the time, I did not share that in addition to being the second child of dear friends of mine, he is also my godson.
Matthew was born with a condition called Hypoplastic Left Heart Syndrome, which basically means he was born with half a heart.
He was baptised and confirmed shortly after he was born, in preparation for his first open-heart surgery when he was only 48 hours old.
Matthew defied the odds and survived that surgery, as well as another one three months later.
On top of the rarity of having half a heart, Matthew also boasts some other rare conditions, including cerebral palsy, Jacobsen Syndrome and Paris-Trousseau Syndrome, the latter affecting fewer than one in a million people.
As a result of all this, and on top of the two open-heart surgeries, he’s had two stomach surgeries, four keyhole heart procedures, two cardiac arrests and has spent around a quarter of his life in hospital.
In the coming week, Matthew will have one more keyhole surgery and one more open-heart surgery, hopefully the last he will need to address the challenges of being born with half a heart, paving the way for him to focus on powering through everything else he is dealing with.
He is a warrior who has faced and overcome more in his short life than I have ever had in mine and perhaps more than I ever will.
Despite being told he would never talk; Matthew greets me with an emphatic “hi” when I see him.
Despite being told he would never walk; I had the great joy of seeing him finally find his feet just a couple of months back.
Despite being labelled as “incompatible with life” shortly after his birth, Matthew will turn four in just a few short weeks.
I am confident he will come through this next round of surgery with flying colours, but he could definitely use your prayers.
So, dear readers, please indulge me for using this column for personal reasons this week as I ask you to please pray for my dear godson, Matthew.
Please pray for his surgeons, that the Divine Physician will steady and guide their hands. Please pray for his doctors and nursing staff, who will be providing him with round-the-clock care while he is recovering. Please pray for his dear parents, from whom he has obviously inherited his warrior spirit and who are two of the most courageous people I know, challenging with every breath the notion that anyone should be labelled as “life incompatible with life.”
Please pray for Matthew’s big brother, who is also very young but trying to comprehend everything that is happening, as well as for his extended family, who are very worried at this time.
Matthew might have a one-in-a-million genetic condition, but he also has a one-in-a-million smile that can light up any room and brighten any bad day. He may have been born with half a heart, but anyone who encounters him cannot help but have their heart double in size because of his spirit.
Being his godmother is such a privilege.