My golden girl Lucy makes me a better man

19/04/2010

This was to be a column about the perils of C-grade celebrity. Of media misanthropy, police law-breaking and the maternal urge. And how these concepts can conspire to deliver you a bloodied nose, if they combine in an imperfect stew.

But I don't possess sufficient grievance or gravitas to bore you this Sunday morning. Instead I want to thank you – and exult in the magnificence of miracles.

Two years, two months and two weeks after my golden Lucy was diagnosed to die, this Sunday she celebrates her first day free of chemotherapy. And the prospect of becoming a normal Kiwi kid.

Which is the flipside of the traffic ticket I acquired last Sunday morning. In that instant, the post-event was aimed at producing a public humiliation. But in Lucy's case, it was the reverse. Her plight gained coverage simply because of who her father was. And produced a kindness from strangers that was not simply humbling, but critical in Lucy's recovery.

At times, it was a little embarrassing. As I would pad my way to the parents' kitchen on the children's cancer ward at Starship, I could see much more painful struggles and more wrenching dramas than was afflicting my family.

Yes, Lucy's initial prognosis was that she would die. That the combination of leukaemia, pneumonia and the fungal killer, aspergillus, would see her not last the month.

When that verdict was calmly delivered by the specialist, all I could think of was dying too. My life was going to end anyway; no real existence was possible without my golden three-year-old breathing my same air. Every conceit, every sense of self simply vanished.

In essence, Lucy made me – makes me – a better person. She delivers me the humanity of empathy, the ability to appreciate and then emote with the disappointment and despair of others. I'm not sure that you must be a parent to acquire this understanding, but for me it refined all my inner selflessness into my soul.

It also did something else. It dropped me to my knees and made me pray.

I'm not a very good Christian. I acquired the religion from my parents as an act of cultural reference.

I appreciate the history and the theology more than the emotional or the spiritual. And I am a nominal Anglican and that denomination is as catholic as Christianity comes – from devil worshippers to divinities.

But I knew that the only thing that would save Lucy would be a miracle. And I didn't believe in miracles. Just dumb fate and the cruelty it visits. Learning that Lucy would die in pain, as the aspergillus transformed her lungs into infected and then diseased honeycomb, rather confirmed that conceit.

Yeah but Lucy was not going to accept her fate.

She fought. My God, that little girl fought. She was routinely invaded – injected, prodded, measured, scanned, given breathing equipment and then injected some more. But there was never the adult realisation that this was hopeless.

Until one night when she sat bolt upright – her arms akimbo from the drips that entered her and an oxygen tube strapped to her face – and declared: "I am not going to die!" Then she collapsed, and slept.

Neither did the medical staff at Starship give up. The specialists, in particular, urged hope. That they had not seen such a combination before did not mean they would not seek and acquire new solutions.

They scoured the internet – linked with their overseas oncology colleagues – caucused to provide a solution on how to destroy the leukaemia blast cells and give Lucy even some immunity, while at the same time not feeding the infective and fatal fungus.

And those were the three legs that saved Lucy. The clinical expertise, the miracle... and Lucy.

It took all three to defeat the monsters that ravaged my child's febrile and frail body.

Which is why I do say "thank you" this morning. Because I was a C-grade celebrity – and a columnist in this newspaper – Lucy's plight attracted national attention. And it attracted people to pray and petition on her behalf. To all those that did so, I shall always be in your debt.

Something moved the divine to intervene – one moment the aspergillus was there – a rash of white dots, and the next scan it was not. Her odds instantly improved from one-in-10 to eight-in-10.

And it was the kindness of strangers. The gifts, the food, the cards simply flooded into Starship. They made a difference too: they buoyed spirits and gave Lucy something external to wonder at and smile about.

The prayer groups – some that still remember Lucy on a regular basis – just blew Leo and I away. From school assemblies to special sittings – something moved so many to seek intervention. Did it work? Look at Lucy today.

And then I remember those kiddies who didn't make it. Little Oliver – the Exclusive Brethren boy – who came into Starship at the same time as our daughter and was, physically at least, her male twin. There is a cellphone photo that Leo sent me, of the two bald kiddies watching a DVD together, little sister Zoe at their side. It still causes us both to ache.

And the parents and children who are at Starship this morning. In their especial, sleep-deprived hell. Shocked, scared and contemplating the evil of absence. In real life-and-death struggles that render the political, commercial and sporting analogies so petty and inappropriate.

There will be grief and pain in my future life. There will be disappointment, humiliation, anger and upset. But none of it will truly touch me. None of it will be truly relevant. It is only when your own child hovers on the edge of the abyss that life seems to have a proper purpose and meaning.

Thank you for caring. Thank you for praying. Thank you for Lucy.

Sunday Star-Times, April 18, 2010 Photo: Kevin Stent

source: data archive