Oscar

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.

Rained on the weekend – good heavy, continual rain. I love rain. Last week I said to Mum, “I need it to rain, my soul needs rain”. My mum thinks such statements are worthy of a giggle and probably melodramatic, but my skin was almost itching for water from the sky, not water from the shower head.

It was a long weekend – literally. I felt overwhelmed, under-slept, cranky, mopey, listless and cranky. I have no idea why. Can’t blame the hormones, but have been enjoying blaming the husband – Poppet, and mother – the Elder, in some pretty rancid headspace at times.

I realise this – what are we going to do when the Elder retires and is home all the time – one big long school holiday is just not worth considering.

And, I wish Poppet had a job that didn’t involve making him so tired.

That and I wish he’s actually try to lose the extra FORTY kilos he’s carrying around his waist, legs, arms, head – do some exercise and just get a little bit more invovled- willingly – in the family unit. That and I wish he didn’t enjoy computer games so much.

Hmmm, just sounds like I’m trying to change him doesn’t it. Worries me.

A friend – Des – once said to me, “Kim, love him for who he is and the reasons you fell in love, don’t hate him for the things he isn’t that didn’t used to matter.” Good hey? Just hard to remember when you’ve had interrupted sleep (again) for the good part of a month – yep, no more than 4 hours sleep at a stretch, various beds etc – and all you want is one morning TO SLEEP IN.

I think that is really the crux of it – I just want a sleep in, just one. But it’s never offered, never given when asked for, and never, well, just never.

Anyway, my beautiful God daughter’s birthday is on Wednesday – a grand big 2 year old! Have to think of a good pressie! Still owe her one for her first – but am trying to think of something long-lasting and yet adorable to a small child…

This is a letter I wrote to some aquaintances. I call them that, not friends, as I never really felt comfortable with how they were with each other or with their kids – way too much yelling, hitting, and just a sense that they, as a couple, didn’t like each other very much.

As you can imagine, not the healthiest of people to be around when I was in my own little meltdown realm.

Anyway, I was not surprised to learn earlier this year that their marriage was over – but I was surprised at my own reaction. I guess they were the first people I knew, with similarly aged children to our own, to end this way. They were also the first to behave pretty darn badly and well, that just brought back all the childhood memories of my own. Why, why WHY do we become so nasty so quickly? I can talk, I do it with my children, my husband, my mother. But still, I have no answers…

29 May 2003

Dearest K & A,

I’m compelled to write to you both. I realise there are probably issues of allegiance and alliance as become unavoidable in these situations, but I had to do something and I felt this was probably the best way at this stage.

I am so deeply saddened by the news that you two are seeking a divorce. As someone who went through a divorce with her parents, I implore you to please please please fight. Fight to work through this stage, fight to stay with each other, fight for your history together and fight for a future your children may otherwise never know.

I can not tell you how many times I have wanted to walk away from being with AB, the most recent was in November last year. Yep, been to hell and back with my own parents divorce and it still looked like the only option.

The thing is, it is not an option. It is NOT an option. You guys have had an incredibly rough time – not only have you had three children in relatively quick succession, there have been periods of job instability and subsequent untold financial strain.

I have had extended periods of time with AB at home when Oscar was young and it was indeed the blackest, bleakest time of our lives. But there is another side, you do come out of the tunnel. Walking away may seem like the only answer, it may seem like the easiest solution to a great deal of hurt, anguish, unspoken resentment, anger and confusion, but it is not the solution.

You HAVE to talk. You HAVE to go and see someone together – and, even more importantly, alone. If at the end of that time (and I’m talking 6-12 months) it is mutual and amicable, THEN it is perhaps an option to divorce from each other.

You both OWE it to your three beautiful children to sit down with a third, unrelated, impartial party, spill your guts and then sift through them to work out the real issues from the immediate responses you are both feeling at the moment.

You have to realise that for your children this will be a turning point in their lives that will change the course of their lives for the rest of their lives. FORGET what it is doing to you. Realise this:

­ They will spend THE REST of their lives trying to mediate and be even with each of you, all the time feeling guilt and betrayal to one or other of you as it is an impossible balance to achieve.

­ Every SINGLE birthday, major event – be it graduation, becoming a school prefect, major birthdays, getting married, having a child – will NO LONGER be a source of joy and happiness, but marred by hoping Mum and Dad can be in the same room together or that Mum or Dad will cope with seeing Mum or Dad with their new partner.

­ Weekends can’t be spend mucking around with mates and chilling out, but seeing one or other parent and trying to forge a relationship that is impossible in a 48 hour period every other weekend.

­ You will think you are shielding them from your petty or grave differences – YOU WON’T – children see every single nuance between their parents and it marks them for life.

­ You will think it is something that happened to the two of you, when in fact, the most impact is on them.

­ You will think they are better off having you separately than together – they’re NOT. That is a highly researched statistic as well as something I can tell you from experience.

You are both adults, you need to remember why you fell in love, why you got together, accept that life changes, that your relationship changes as you bring children, mortgages and other life events into it and that you BOTH have to adjust to that, because, simply, its life.

Please, I am imploring you both to accept that it has taken actions and words, or lack thereof, by both of you to make the current scenario exist at all.

Accept that BOTH of you will have to make changes, sacrifices and allowances for each other to rebuild your life together. Accept you both will have to recognise your role in the situation and be genuinely open and honest in your own shortcomings as well as those that seem so apparent in each other at the moment. But most importantly, recognise that down the track, it will be so WORTHWHILE compared to the current track you are heading down.

Here is the number of a relationships counsellor that a couple I am friends with went to when they had separated over what they thought were irreconcilable differences due to untold stress and emotional hurt due to fertility issues:

I’m writing this, I know, at the risk of jeopardising my friendship with you both. But I am desperate for you to realise this current path will not make it all better or make it all go away. I am also speaking for J, S and C who are too little to be able to voice what way too many children know and have experienced.

This is not the answer guys. It is simply not the answer.

Finally, and most importantly, BE KIND TO EACH OTHER. While it may be difficult at the moment to see why on earth you ever got together in the first place, remember those good times, remember you have made a family together and that the family that weathers the worst storms together, are a true family indeed.

I love you both and am so very very sad that this is all taking place.

Kim.

I found this on a fabulous blog Life in LA – which was profiled in the SMH and actually introduced me to this whole liberating world. Thank you Claire Smith.

I Go Back to May 1937

I see them standing at the formal gates of their colleges,

I see my father strolling out

under the ochre sandstone arch, the

red tiles glinting like bent

plates of blood behind his head, I

see my mother with a few light books at her hip

standing at the pillar made of tiny bricks with the

wrought-iron gate still open behind her, its

sword-tips black in the May air,

they are about to graduate, they are about to get married,

they are kids, they are dumb, all they know is they are

innocent, they would never hurt anybody.

I want to go up to them and say Stop,

don’t do it–she’s the wrong woman,

he’s the wrong man, you are going to do things

you cannot imagine you would ever do,

you are going to do bad things to children,

you are going to suffer in ways you’ve never heard of,

you are going to want to die. I want to go

up to them there in the late May sunlight and say it,

her hungry pretty blank face turning to me,

her pitiful beautiful untouched body,

his arrogant handsome blind face turning to me,

his pitiful beautiful untouched body,

but I don’t do it. I want to live. I

take them up like the male and female

paper dolls and bang them together

at the hips like chips of flint as if to

strike sparks from them, I say

Do what you are going to do, and I will tell about it.

–Sharon Olds

When will the rain stop

falling in my head

when will sun shine warm my eyelids and prickle my skin

when will the dark clouds

the blackness

the stillness

lift from my spirit

from my self

from me

and let me fly high

above the others

the trees

the clouds

and let me be me?

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