The Upside of Down (3 page)

Fine. Good. I think I'll just roll over and go straight back to sleep now that I know our baby, currently about the size of a sweet potato, will be curled up and have a needle poked into the bottom of his spine.

Unfortunately for our marriage, as I hang up the phone Darryl carefully repositions himself then almost immediately begins to snore gently. I'm more than surprised; I'm furious.

‘Darryl, wake up! How can you go to sleep after that phone call?'

He stirs, saying nothing. I grab his left shoulder and shake it.

‘What? What's the matter?' he replies, genuinely sounding like he doesn't know the answer.

‘What do you mean? You know what the matter is. Aidan might have meningitis and they're about to do a lumbar puncture.'

‘Yeah, I know that. But he also said not to worry about it, that they would let us know the results in the morning.'

‘Of course he said that. What else could he say? But what he means is “This could be a really bad thing and I'd be worried if I were you.” I can't just go back to sleep. Maybe we should go in to the hospital …'

‘I'm not going to the hospital. I'm going back to sleep. Don't worry about it. He'll be fine.'

‘How do you know he'll be fine? You don't. I can't just go back to sleep, damn it.'

‘Goodnight, Sue.'

So far, Darryl and I see the world through a very different lens when it comes to managing the stress of illness. This does not bode well.

And all I know about parenting so far is that I love my son and that this feels like hell.

To our relief, the test is negative. But I'm surprised by the way this scare affects me. I find myself arriving earlier and staying later at the Neonates, fearful of leaving my vulnerable baby, suddenly conscious of all the nasty bugs and potential disasters swirling around him. I had always been fairly relaxed about health issues, the kind of person who rarely visited the doctor or stressed about lab results. But over this month I can see that changing. Nobody in prenatal classes warned me that the world might feel like such a different place after the birth, that there would seem to be so much more danger around once I had someone relying on me to keep them safe.

Several days after the meningitis event, I arrive at the Neonates to find an official-looking letter on top of Aidan's incubator. This is most likely an oversight, as the doctors are generally conscientious about discussing issues with us, rather than leaving vital letters lounging around like old copies of
The Women's Weekly
. The letter is from the National Screening Unit which, apparently, tests newborns for rare but life-threatening disorders.

‘Dear Doctor … blah, blah, blah … I need to inform you that this baby has tested positive for cystic fibrosis … blah, blah, blah.'

Noticing my distress, one of the nurses comes over to check on me. No, she hasn't seen the letter. She rushes to get the doctor from across the room.

‘What is cystic fibrosis and does Aidan have it?' My throat is constricted and dry, the words barely escaping. My mind races with names of medical conditions and images from the past, madly sorting and filing them. Cerebral palsy: brain issue. Muscular dystrophy: affects the muscles. Multiple sclerosis: something about inflammation and muscle weakness. Cystic fibrosis: what on earth does that mean? I don't know what it is, but I know we don't want it.

The doctor, a Canadian, deftly avoids the first question and tut-tuts the second; assuring me that many premature babies have false positives on these tests. She chides me for over-reacting. This woman has obviously undergone some kind of neurological procedure to excise any residue of empathy.

‘Aidan will be re-tested, but don't give it another thought, as I'm sure it's nothing.'

That night, after returning from the hospital, we greet my parents and then make a rapid retreat to the bedroom with our dictionary. We sit on the edge of the bed, huddled together flipping pages until we reach it. Cystic fibrosis is defined as a multi-system genetic condition, primarily affecting the lungs and pancreas. It describes a terrifying and steady deterioration of the lungs due to a lethal cycle of infection and inflammation. The decline begins at birth, continuing on until premature death, normally in early adulthood.

The dictionary describes a chronic cough, unsettled nature due to poor digestion, malnourishment. Aidan has no cough, none. His lungs, according to the medical team, are fine. He's a contented baby. And although a bit skinny, he looks like King Kong compared to his neighbours in the Neonates. The symptoms don't fit. Besides, there's no history of it in the family. It just doesn't make sense.

Darryl and I say nothing. He gets up and goes to the bathroom to wash his face. Unable to talk to my parents, to discuss this unimaginable new possibility, I begin picking up scattered clothes and folding them away in the drawer.
Please
. Dirty socks in the laundry basket.
Oh please
. Crumpled summer dress from the chair to the closet.
Oh please, no
. We have been through enough. It can't fit. I can't do this.

The next few weeks are ridiculously hard as I try to focus on anything but this odd-sounding condition. Over and over I replay the doctor's prediction that it's only a false positive. It's an enormous temptation to simply park myself on the floor of the Neonates and rock slowly with worry. Instead I try to hum songs by my favourite artists—Indigo Girls, Dar Williams, Bruce Springsteen, anything. I find myself longing to knock the clock back to the days of my simple childhood fears: no boyfriend, no beauty marks and last pick on the sports team. Back to the days before realising that an innocent baby might be born with debilitating challenges. I pray sporadically and plug my ears to cast out the demons of doom flitting about my head. The more I try to ignore it, the bigger the temptation to worry becomes, like trying not to polish off the entire box of Tim Tams while grinding out the annual tax forms at one o'clock in the morning.

Finally, and somewhat without warning, when Aidan is five weeks old he shows enough general improvement and weight gain that he's discharged from the hospital. Darryl and I are given instructions on caring for him at home, the doctor makes a follow-up appointment at the hospital and tells us that a community nurse will come and see Aidan. We pack up his clothes, toys, cards from the walls around his bed and then gently place our new baby in his car seat. He is so small that he slumps into a heap and we can barely get the straps around him, it's like trying to gift-wrap a pile of jelly.

It's Valentine's Day. When we first arrive home there's a lot of hustling about to organise life around Aidan; ridiculous that one tiny presence can send four grown adults tearing around like spooked chickens. But then, as usual, the sweet little lump falls asleep. After we put him to bed my parents offer to babysit and Darryl and I share a quiet dinner at a local restaurant, celebrating the end of our medical worries.

The next morning mom washes the laundry, folds tiny baby outfits and plans dinner while dad paints the final coat on the second-hand nappy-changing table. After so much chaos, it's a relief to immerse myself in the mundane nature of this new baby routine. No more ‘code call' announcements over loudspeakers, no beeping monitors, no red-eyed parents at the next bed, no blood tests or daily weighing, no more wrist and ankle bands. Today is the beginning of our normal life as parents; the life we envisioned throughout the pregnancy.

Later that afternoon my dad and I are sitting in the living room reading when the phone rings.

‘I'll get it, Susan,' my mom calls from the kitchen. I return to my book but a moment later look up to find her standing over me with the phone in one hand.

Now my mother has skills that range from making an excellent spaghetti sauce to organising a two-week tour of Tanzania. But holding a poker face is definitely not in her skill set. Worry is pouring out of her like sweat.

‘It's the hospital doctor. He says it's about Aidan's second test results.' I take the phone from her.

We have a brief discussion. Immediately after hanging up I can remember only two main points from the conversation. First, the doctor said it was likely Aidan did have cystic fibrosis. Second, we would have to wait two weeks for a definite answer because he was going on holiday the next day.

Generally, I don't hate people. It's not because I'm so virtuous, but being oversensitive and, okay, a little emotional, I'm not the type of person who can easily manage enemies. But at this moment, anger is streaming through my veins like hot snake's venom. This man may have a trail of letters after his name and framed diplomas on the wall, highlighting his medical expertise; however, with bathers to pack and a plane to catch, his supply of compassion and helpfulness has run dry.

‘There must be some other doctor who can meet with us while you're away?'

‘No.'

‘Isn't there a way you can access the results before leaving?'

‘No, it's not possible.' Then, the clincher from him: ‘Another few weeks isn't going to make a real difference for Aidan's health.'

Maybe not Aidan's, but it could most certainly be life or death for my frazzled mental state. I mean, really, we're not talking about a diagnosis of colour-blindness.

It turns out that doctors come in many shapes and sizes, some much more attuned to patients' and families' needs than others. David, our family GP, is a man with a listed home phone number and astonishing kindness, despite being pulled away from his meat and three veggies by a frantic new mother.

By eight o'clock the next morning David has organised an appointment with a different, non-holiday-bound, doctor. Several hours later Darryl and I meet him and a geneticist at the hospital. We listen as he confirms the diagnosis of cystic fibrosis.

I climb into the back seat of the car, alongside a peacefully sleeping Aidan, for the drive home. In my husband's typically steady and unemotional way he has stuffed the news in some pocket, returning to work with the vague expectation that life as we know it will continue. I could no more do that than tie my ankles behind my head.

My dad is driving the car, my mom silent beside him. They are in New Zealand to wash nappies and rock crying babies, not help us pick our way through grief and shock. The mood is brittle; talking seems like something I should do, to comfort my parents and be comforted. But my words have vanished, left behind at the hospital, swept away.

Instead I stare blankly at familiar buildings and streets flashing past—the optometrist, bank, primary school. I'm surprised to see people casually walking to lunch and doing their shopping, the kids running in the playground appear relaxed and happy. Wellington, on this clear morning, looks so much like it did an hour ago, yet it can't be the same place. Everything has changed.

2

DEFINITIONS

In the weeks that follow Aidan's diagnosis, Darryl and I graduate from medical kindergarten, pressing on through grade one. We quickly learn to sift through confusing
New England Journal of Medicine
articles, ferreting out any helpful scraps of information. I read books and articles at two o'clock in the morning, while feeding Aidan. We both rake the internet, visiting websites relating to cystic fibrosis. There isn't time to even crack open the non-medical
What to expect the first year
parenting book.

This is not what we expected.

For most of my life I had been, like so many other people, happily ignorant of the medical world. My three sisters became nurses but I studied politics. My mom volunteered at a hospital while I steered clear. Apart from a few sports-related injuries, I managed to avoid white coats and waiting rooms altogether. Sports and fitness formed the core of my life. When aged eighteen I won a scholarship to play volleyball at Duke University, playing and training more than twenty-five hours each week. As life went on I assumed I would remain indefinitely in that exclusive class of healthy people, an elite group who pass by hospitals without entering, dropping gold coins in buckets labelled with unpronounceable medical conditions—giving partly out of generosity, partly as a superstitious offering to the gods of good health.

Then, while studying at Stanford University several years later, I met Darryl. I should have known better. I mean, it wouldn't take a rocket scientist to see that a relationship with a man from the furthest end of the planet was going to be complicated. And, oddly enough, I actually had about four Stanford PhD rocket scientists as friends at the time. But even they didn't warn me.

I first encountered Darryl at one of those unpleasant beginning-of-the-year student parties where everyone is a stranger. He was about my height with a sinewy runner's build and perfect shoulders. I only noticed the striking blue eyes later when he made his way over to introduce himself, accompanied by his Indian roommate, Jayant. His faint Kiwi accent might have been enough to sell me on the man, except our first conversation throbbed with awkwardness. I learned he was from New Zealand; he was intrigued to discover that I played competitive volleyball (I suspect he knew about the tiny shorts worn in the sport). Then we discussed our academic plans.

‘I'm stressed about my economics class,' I confessed, after discovering he was working on a PhD in the subject.

‘Why?'

‘The maths may do me in; I'm not really a maths person.' Later I would discover that he was a ‘maths person', with a First Class degree in the subject from Cambridge.

‘Oh, I wouldn't worry. Anyone with good calculus skills will be fine.'

‘Uh, I never, er, actually got around to taking calculus …' I admit, as though confessing to not showering for the past month.

‘Really?'

I nod my head, grimly.

‘It must have been hard to get into the program without calculus …' he trails off, genuinely shocked.