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16 February 2008

MICHAEL LAWS
LUCY'S DADDY
(A personal diary)

LUCY: light of my life

My partner is right. And while that might be a difficult admission for a male to make, it has been, easily, the least painful revelation of this past week.

Leo reckons that I’d never properly been in love. Not until Lucy was born. And she is right.

I fell in love with Lucy the moment she was placed in my arms. Although I fell in love - infinitely - the next moment when she actually looked up at me. And while everyone will say that newborn babies can’t properly focus, Lucy somehow did. She entered the world self-aware and I was smitten and swayed straight away. Any thought of my place or position in this world – generally determined by status, salary or sensibility - was lost immediately. I surrendered. I was gone.

I’ve been gone these past three years. When political enemies wanted me sacked, when editorial writers thundered their outrage, when contemptuous observors withered me with their best stare, when critics called out “you wanker” from the sidelines … I didn’t care. I had Lucy.

And love is like that. It insulates you from the expectation and anxieties of others. It cocoons you from all the nastiness and nonsense of this world. Love means that nothing else really matters.

I came late to parenthood despite having two great older kids. I was not mature enough or smart enough – in my early, early twenties - to understand what I understand now. That parenthood is the most important job ever. More important than being prime minister or a pop star or a professional sportsman.

That short of saving the planet (and Kyoto and carbon credits probably won’t) or discovering the cure for child cancer, that no human occupation transcends being a mum or dad. I regret I learned that lesson late, but learned it is.

Such elemental wisdom has only been exaggerated this past personal week by the appalling knowledge that Lucy is sick – and the medical odds suggest that she will die.

My golden girl – feisty, fun, articulate and bright – is beset by one of the rarest malignant combinations on this earth. It is the worst irony that the rarest of girls should be so stricken.

Leukemia, and a dreaded fungal disease, is currently ravaging her lungs. Leukemia would be a gift: if Lucy were only diagnosed with leukemia this Sunday morning I would be shouting strangers to the last dollar of my credit card limit.
Let me backtrack.

Last Thursday night – when I generally write this column – Lucy was fine. She did as she always did: conned both her mum and I that she would enjoy the better night’s sleep beside her dad in bed. She wrapped her hands around my forearm, pulled herself close, and went to sleep.

She did the same tonight. Except that she is in Starship Hospital’s child oncology ward and linked to an array of machines that go beep at alarming intervals. She has an oxygen tube in her nose and is bloated by a combination of medication, blood transfusions, chemotherapy and sustaining saline. She is unrecognizable from the healthy imp that demanded her dad push her swing higher last week, higher than the trees.

By Sunday, she was in the grip of fever and flown from Wanganui to Starship by a Lifeflight metroliner. Very possibly the worst passenger plane ever devised, but this one had been hollowed out to include three paramedics and a support capsule that enveloped my daughter. At that time, we were told she had an acute case of pneumonia.

Twenty four hours later and it was leukemia. We despaired and then did our research. Most kids survive.

Twenty four hours after that and the specialist advised that Lucy had one of the rarest fungal diseases on the planet – both the initial pneumonia and now this insidious aspergillus being escorted to their target by the leukemia having destroyed Lucy’s ability to fight infection. Her white blood cells are virtually non-existent.

It was not as if she was a sickly child. There had been no real indication that Lucy – the girl who liked to run – had anything other than a succession of childhood maladies. And like all small children she recovered quickly.

Even now – with all the various medications and the dire prognosis – she does not look as close to death’s door as the odds seem to place her. She is still our Lucy – stroppy and smart. Her exquisite mane of blonde-copper hair still shines, her blue eyes still flash with awareness.

Lucy and Mum - July 2005

Meanwhile her mother and I hover between hope and despair. Every hour that she does not deteriorate seems a victory to us. Every infusion, we say, is only making her stronger. Although this combination of medication that fights the aspergillus, then the leukemia, then the fever would overwhelm us. I would not have the courage or the will to sustain the literal battering my Lucy has taken these past days.

The treatment of leukemia is brutal enough – if the ends were not so benign you would judge the means as torture. But how much worse that she has this other infection and therefore must run the gauntlet of lumpar punches, CT scans, platelet infusions, blood tests, chest X-rays, bone marrow biopsies, transfusions and a range of other medical procedures that arrive with every half hour.

At times, Leo and I contemplate the ultimate end game. At others we remind ourselves of her spirit and her strength and we are shamed by it. Or at least, I am because I have been a mess this past week and Leo has been the rock. Which is the thing about mums – even faced with this kind of appalling adversity they seem to take charge in their matter of fact way.

As Leo says – there are people who order things around and people who simply do. I’m one of the former she implies, which makes me utterly redundant. I simply hold my little girl’s hand, stroke her hair and tell her that I love her. That is my lot: I’ve never felt so useless in my life. Nor so helpless.

And yet within such darkness there are also shafts of light. They burn the brighter for the situation whether Lucy sitting up in bed today and drawing a picture of Daddy on St Valentine’s Day, or explaining to me the plot of ‘Aristocrats’ and who are the goodies and who are the baddies. She is currently a client of the cult of Disney and ‘The Little Mermaid’ is her favourite intrigue.

I promise her that I will fly her to New York for her fourth birthday to see the Broadway musical of Princess Ariel and her fishy friends. She loved the idea last week. Today she does not care. She just wants to stop being sore, Daddy.

Leo’s grief and shock is no less than mine. But she is like her daughter and can order it constructively. She is determined that Lucy take her oral medicine – steroids to give her strength and regain her appetite. The alternative is a feeding tube. As Lucy protests, Leo insists. There are tears and tantrums. She finally takes her medicine.

As for the family – they are all here. Her big brother and sister – James and Rachel - have flown up from Wellington and Dunedin respectively, and her more immediate siblings Ella, Noah and toddler Zoe are also here. It is a gathering shot through with understanding as to the purpose of our reunion. If the medicos are right, then the collateral damage will be immense. The capacity for enduring cruelty gathers.

But I will not let such thoughts settle. Lucy has a chance, small though that chance might be. She is in the right place with the right people. And if she has overcome such insurmountable odds in actually contracting such a malicious malady, then why can’t she also use those odds in her favour and defeat it? Hope endures.

Sustained by prayer. I am not an overtly religious man but I have been on my knees many times this past week. Praying, pleading, begging, bargaining. Messages that others are praying for Lucy filter through. Down the hallway, an Exclusive Brethren couple are battling similar odds to keep their two year old son alive. We smile and shake hands. They say they are praying for Lucy too.

Which is the thing about this Ward 27B on the 7th floor of Starship Hospital. Every room is the same drama played at a slightly different tempo. Parents are allowed to sleep in the room with their children and almost all choose to do so. But we do not sleep – a shuttle of mums and dads frequent the kitchen at all hours. All wrapped in their own circumstance and concentrating as much will as possible in keeping their own kids alive.

I thought I might feel better for writing all this. That articulating my thoughts might make a difference. But it doesn’t. Lucy is still in that bed and hooked up to her monitors, needing that oxygen tube in her nose. She is still in mortal danger. Her lungs are still under siege.

Lucy: my golden girl. This beautiful, fearless, innocent child who can run like the wind, has already planned who she is marrying (or rather, “Brigham is marrying me”) loves her family and especially her little sister Zoe, and is destined to contribute to society and never detract.

Stroppy enough to have her old brother Noah sorted with a combination of terror and love. Who rushes into Ella’s arms everytime her big sister comes home from boarding school. Lucy, who tells me that “it’s light Daddy – it’s time to get up”. Who helps me make the tea every morning and insists upon removing the teabags herself from the piping water. Who dips her finger in the sugar bowl when she thinks no-one is watching.

Lucy … who searches out Zoe every morning for a good morning kiss. Even if Zoe is asleep and been told to let her stay sleeping. Who walks with me to the gate to collect the ‘papers. Who has started ballet and loves the movement and her fairy costume. Who fearlessly clambers onto the trapeze at the gym or the flying fox at Kowhai Park, and gives her mother palpitations. Who saves the monarch butterfly caterpillars by putting them on those swan plants that still have leaves. Who feeds and chases the ducks at Virginia Lake and then devours the treated ice cream from the café. Who wants a puppy and has already started the softening campaign.

I love you, darling. You are Daddy’s life. You are your Mummy’s life. Please don’t go.