I want to take you on a journey.

It’s one many of us have started, some with more success than others.

But my point is this, regardless of the road you take, regardless of whether your map is upside down and you feel like you’re heading in the completely wrong direction and even if the wind is in your hair and the sun on your face, the journey will always be full of mixed blessings, great adventures, periods of doubt, angst and even boredom.

But this part will always hold true, it’ll all be worth it in the end.

This was something I said to myself over and over as my first pregnancy descended into hell. As I lay in the dark labour floor observation room, in the middle of the night, 21 weeks pregnant, freezing, scared, trying to sleep and will my cervix to close all at the same time, it kept coming back to me – life is a journey, life is a journey, life is a journey.

This journey is our son’s, Oscar, but I want to show you some snaps we’ve taken along the way.

When I was at school we had a rather fierce, very short, very round head mistress who ruled the place with an iron fist. At the time she scared the living daylights out of me. Now, my main memory is the Gaelic blessing she would recite to us all at the end of each school year, and with great poignancy on her retirement.

May the road rise to meet you

May the wind be always at your back

May the sun shine warm upon your face,

The rains fall soft upon your fields

And until we meet again

May God hold you in the hollow of His hand.

There are so many occasion since then I have felt the road fall from under me, the wind beating me back, the sun hidden, the rain blinding and God so far from me it seemed unimaginable he had ever been in my life at all.

At 21 weeks I had a threatened miscarriage. At 28 weeks I was ‘sizing big’ (story of my life). At 30 weeks I had premature labour – only stopped after about 12 hours on an IV Ventolin drip and then a delightful muscle relaxant suppository.

If anyone ever wonders why women – particularly mothers – have no sense of shame or prudence, its because of situations such as these. Two words – suppository and bedpan.

At 31 weeks I had another round of premature labour – triggered by what was now being called polyhydramnios, a term for having more than double the normal amount of amniotic fluid. I called it bloody uncomfortable. The other trigger was my husband slipped at work and dislocated his knee. At the time, if we’d had any idea he would be off work for six months as the workers compensation claim got bungled I think I would have done myself in then and there.

By 32 weeks my fundal height was 46 centimetres – yes, my stomach had stretched a whopping 16 centimetres in two weeks. We were now in the land of kick-charts, twice-weekly hospital checks and a game of keeping-baby-in. I had this perverse pride at the time, coupled with a niggling concern all was not well in baby land. But that big round belly, the attention, the drama, these are things my life thrives upon. I only wish I hadn’t felt so guilty at the time about lying on the couch and doing nothing. We timed it and worked out I could stand up for 14 minutes before contractions would start. This, as you can imagine, is quite limiting.

When I look back I am surprised at how calm I was through all of it. I suspect if I’d had an incident free pregnancy first time around I would not have been quite so centred. I was 24, no medical problems, a non-smoker (apart from a few wayward years at university) and non-drinker (well sort of, and compared to now I could have said teetotaller). The thought of having an amniocentesis (the only prenatal test at the time if I recall) was ridiculous for someone of my age and background. Ah, the benefit of hindsight.

Then life calmed down. ‘Miracle’ they said, ‘count yourselves lucky’ said others, ‘will be a miracle if you get to 35 weeks’ said those in the know. And sure enough, 34 weeks, in the midst of the calm before the storm, the Southerly buster hit.

My waters broke at home. Correction, my waters flooded home. In ankle deep amniotic fluid, checking between my legs that the cord was not coming out and the fluid clear, it was all about to really unravel.

Three bath sheets – not towels – and a waddle later, we’re on the labour floor almost cheering that after all these weeks we’re finally having a baby. A few weeks early but hell, anything would be better than this constant non-event. Ah, the benefit of hindsight.

But no, I wasn’t early or late enough for the inducing brokers to keep it going, so just as the labour had kicked in it decided to check out and I was back downstairs to the pre-labour ward to what had become ‘my’ bed.

This was when we knew all was probably not well. I looked like I’d had the baby. In fact, one of the midwives saw me in the corridor and asked what I had. I was very small. Too small. It was now the ‘there could be something wrong’ discussions came to the fore. Everyone kept reassuring us, and as I got more and more institutionalised (I actually did once comment to my husband, a chef, that the food wasn’t that bad, something he will never let me live down) one registrar said that at my age it was highly unlikely there would be anything wrong. As I replied, someone has to be the statistic.

Five days later, after a textbook short labour – 3 hours early bearable pains, 3 hours from hell with more vomiting than the best bout of food poisoning could muster – our son was born. Oscar.

He had severe respiratory distress, weighed less than two kilos, had undescended testes, large low set ears, wide-set eyes and bilateral choanal atresia. More on that later.

Of course, we didn’t see any of that – all my husband and I saw was our son, our baby, our first-born, ours. He was beautiful and perfect. He still is.

After a few brief minutes he was taken to the neonatal intensive care unit – the NICU. If anyone has seen the movie Being John Malcovich with the 11 ½ floor – the NICU is the real life equivalent. Once involved in this world, you never ever have the same attitude towards life and death, germs, germ transfer or washing your hands again. You also realise what it is to see people with jobs that really do matter. These people save tiny people’s lives every single day. Remarkable.

Anyway, Oscar almost died the first night. They couldn’t work out why the CO2 levels in his blood kept going through the roof, or why they couldn’t get a gastro-tube down his nose (normal practice with neonates so they can be feed). We had a few scary days trying to ascertain what was going on. I got the 3-day baby blues, had the daily wrench of being in a maternity ward with no baby surrounded by women who did, and I discovered my new best friend, the breast-pump.

When I look back it was horrific. We had a baby in a humidicrib who kept threatening to die, I had stitches from here to kingdom come and it had never ever hurt so much to do a wee, let alone other ablutions, and well, there was so much blood! To make matters worse, I only ever had a stool to sit on beside his crib. Agony.

At times like that you thank God for small mercies – ice fingers, surfboard maternity pads, understanding midwives and a medical team of angels.

As Oscar approached the two week mark, they wrapped him in cotton wool – literally –, put him under an anaesthetic and checked out the nose situation. Hence the bilateral – both sides, choanal – nasal passages, atresia – blockage.

We were not surprised but gutted all the same. This meant longer in hospital, it meant surgery and it meant no breast feeding – how can a baby breast feed if he can’t breath through his nose. A small but rather important point. So, I named my breast pump Larry and had three hourly, 15-minute-a-side rendezvous’ with him. I think breast pumping milk into bottles, when your baby lies in a crib beside you is the modern equivalent of water torture. It seriously did my head in.

Then our neonatalist said they had done a genetic test when he was born due to the range of characteristics and issues surrounding my pregnancy and his birth. This was the cushioning for news to come.

Just as we discovered he had a dodgy nose, we also learnt of his dodgy chromosome. Oscar has a partial duplication on the long arm of chromosome 4. If we had been gutted before, now we were being swept down the storm water drain. This was harrowing. Looking back, I think we were both so scared of the future for our son that, for us as a new family, it almost hurt to breath.

We didn’t know anything about genetics bar what I frantically tried to dredge up from high school biology. All that surfaced was recollections of how we ended up with blue or brown eyes and something about cross-cultivating plants. Not helpful with long arms, partial duplications or the new motto that entered our world – one-day-at-a-time. So little did I know that for the first few weeks I spelt chromosome incorrectly – a key indicator for a pedant like me that I was not coping.

As we sat there, surrounded by tiny children struggling to survive, the world going on outside in one of the hottest summers on record, I started to cry. “But he’s perfect,” I said. “Of course he is,” said our doctor, “he’s your son”. And so life goes on.

The foundation for our approach and acceptance, albeit reluctant, was cemented by the attitudes and comments from the team who looked after our boy. That is a debt I won’t ever be able to repay, except to tell them how grateful we are, and will be, for the rest of our lives. The love, acceptance and dedication they showed to him then, set us on the path we follow now.

We told our families and watched as everyone coped in their own way. My Mum was – and still is – on a quest to ‘fix’ him. Fiercely protective of him they have a relationship that knocks my socks off daily. She’s a teacher so I guess this connection is to be expected.

My mother-in-law set about learning as much as she could and being a positive driving force (although we’ll always remember the image of her stroking his hand through the humidicrib wall with one hand and wiping her tears away with the bottom of her skirt with the other) as my father-in-law kept reiterating he’d be fine and, if he hadn’t been born early we wouldn’t have known any of this. I guess adhering to the what you don’t know can’t hurt you rule was helping him through.

My father and stepmother said he’d been sent to us for a reason and I searched and searched for just what I had ever done wrong, in this life at least, to be sent so quickly to hell.

Some friends withdrew, unsure what to say or do, while others just loved him as he came, bless them.

The counsellor told us it was alright to grieve. I wanted to scratch her eyes out and scream that he wasn’t dead – but know I understand, because when your child isn’t ‘normal’ you live with what a friend who has a daughter with a genetic disorder calls ‘living grief’. A grief for who and what he would have been without this, without everything being a challenge, without everything being delayed, without everything being a hurdle, without everything being a battle. But I’m getting ahead of myself.

As we learnt this, the tidal wave continued. All I wanted to do was go home so – after almost 3 weeks in hospital I did – only to miss the EIGHT phone messages that we were needed back at the hospital urgently. Talk about maternal guilt.

We got back and they were preparing to move him to a children’s hospital for surgery to correct his nasal passages. They wanted to take some of our blood to check which one of us, if either of us did, had the dodgy chromosome – a Pandora’s box we were trying to ignore.

Everything was going so fast, there was so much bustle and action moving Oscar and all his machines that go bing, and then, in the midst of this, the registrar taking our blood dropped the vial. It shattered on the floor, all over us, the floor, the base of about four humidicribs. My husband’s shoes still have the stains.

I find it curious he never cleaned them off, they’re like a living relic to what we were going through at the time.

And then, we were gone. In the back of an ambulance, Oscar strapped under the equivalent of Occi-straps and a bright blue and white striped blanket barely causing a bump in the bed, we had taken our first step out of wallowing and into the world of getting on with it.

Six long weeks later, my affair with Larry still in the throes of torrid pumping, a round of isolation as the ward got hit with a gastro-virus, and some tentative breast feeding underway, we came home.

It was so strange having him in the car, that we weren’t quite sure what to do. So we stopped off at the NICU on our way home – to show him off and I think prove to ourselves we were allowed to now do whatever we wanted, when the spirit moved us. It was dawning on us that he really was ours and now we could make decisions without seeking approval or guidance from nurses, doctors, specialists or counsellors. We were scared witless but also remarkably empowered.

We then had a shaky few weeks establishing feeding – the poor little tyke was probably starving as I fiercely limited bottle-comping and relentlessly stuffed nipple into his mouth. Then one day, when we’d gone to visit Mum and hadn’t taken a bottle, and he needed to feed and wouldn’t latch on, it got ugly. For someone so small (he was only about 2.5 kilos) he could scream and the affect on me was harrowing. So, we put him in the car and hot-footed it home – only to get half way and pull over to try again. Small and persistent are words that come to mind.

And there, on the side of the road, he latched on like never before, and we never looked back.

I don’t think we have since.

It’s been four and a half years since those tumultuous days. He now has a brother that he loves more than life itself. He doesn’t have verbal language but is more communicative than many boys his age. He looks a bit different, he is small, he is moderately to severely globally delayed. But he has an empathy for people I would have always hoped my children would have. He delights in the day to day tediums that we all should delight in. He has a keen sense of humour, an amazing appetite and a capacity to love and forgive that puts most of us to shame. I find it fascinating that we measure progress not on someone’s capacity to love, show affection and relate to others, but on whether they can cut a straight line, sit through a story, put a jigsaw together and ride a bike.

So you see, he’s our boy, he’s perfect and the journey has only just begun.