feel the love as I dig dig dig …

Well by now its fairly obvious that my mindset and mood this week hasn’t been as cheery or upbeat as per usual. This is due to a number of factors, some long-standing buried bone type issues and others more current and – naturally – relating the the offspring.

It was confirmed for us this week that Oscar will need botox and splints (yes, the shot for his mum jokes are running thick and fast) for his precious little chicken legs. Apparently the foot-rolling issue is ‘significant’ for his age and will become physically inhibiting and quite painful if untreated. I wish there was a scale to measure than pain on the pain of having to wear modern-version planks of wood on your legs like a modern day polio child through an Australian summer and childhood.

You know my biggest undoing – not that he has to have them, but that I have to try and explain it to him. Those stunning, sparkly, innocent eyes just look at me in complete trust and security. And I know he’s going to wake from a general with his planks on and be so utterly devestated – and then look at me with the stunning sparkly sad eyes that crush my soul in an instant. We were also informed that tendon surgery will be unavoidable, and that the botox and planks are just a good trial to show that the surgery would be successful. Somewhere in my head I get that logic, but its buried deep deep deep down.

But buried alongside it is the knowledge that, as this child does on a daily basis, he will adjust with good humour, grace and charm to this latest load. Teaching me to not sweat, wallow or cry on and over such matters as all he really wants is:
– us to love him no matter what
– someone to go with him for a walk and scooter ride
– someone to pat and sing him to sleep
– unlimited access to continual episodes of Kim Possible, Lilo & Stitch and American Dragon
– that the television never to be off Channel 35 except for The Simpsons or a Cowboy & Indian movie ideally featuring lots of shoot-outs and horse riding, gun totin’ real men.
– as many weapons, preferably guns, and even better,ones that make noise and have lights in or on them as we will allow
– for everyone to be present and accounted for
– chocolate at least once a day
– and ice-cream with sprinkles and/or topping every night.

Other buried bones that are breaking the surface of my brain at the moment include:
– as noble and virtuous as Petro Georgiou, Judy Moylan, Bruce Baird and Russell Broadbent may be appearing at the moment – http://smh.com.au/articles/2005/06/16/
1118869040923.html

I can’t help wondering why now? Safely ensconced in their electoral seats for another three years, safe in the knowledge that very soon their party will have absolute power, they suddenly come over all concerned and virtuous? Get real. How easy it is to look impassioned and dedicated when there’s a virtual guarantee what you are fighting for will not happen and/or change anything. How noble we look when defeated. Where was their outrage and concern when it mattered and could have done something?

– what has happened to the investigative bones of our newspapers – how How HOW can it be that in this day and age the appalling occurrences and culture running detention centres has been left to run its poisonous course for SO many years. This stuff should have been front page every.single.day for the last few years.

– where is the outrage and concern over Chen Yonglin – http://smh.com.au/articles/2005/06/11/
1118347633130.html

and the SPINLESS behaviour of our Government in response??? Snaps to the Journos forum on Richard Glover last night (
http://www.abc.net.au/sydney/richardglover/) who really gave the govt what’s what about standing up to bullies and in doing so recognising the HUMAN RIGHTS of these people.
They also made the very pertinent comment that if it had been someone from Syria or Iran the government would have been all over them like the worst kind of love rash.

So… Bec, come and rub up against me as I seem to be harbouring enough rage for all at the moment…

A fond farewell

Two of our dearest friends are heading to the UK due to a work transfer. Bob and Lindy-Lou have been dear to my heart since we met in second year uni and we discovered a mutual love of food and all things Italian (Lindy-Lou is Italian and her family commits every endearing stereotype you can imagine of an Italian family living in Wollongong).

And now they are leaving.

Its not that we see each other that often, but its the comfort knowing they are nearby.

There is a bad ugly selfish level to all this as well – on my part that is. (I also never learn as similar bad selfish thoughts re another friend’s overseas trip a few years back became the death knell for what had been one of my dearest, most valued friendships.)

Tomorrow they head off for a week of reconnaissance to check out Bob’s new workplace and suss out some nice parts of town they could live in. They found out on Tuesday, they go tomorrow.

The word ‘spontaneity’ comes to mind.

The most spontaenous I get to be now is deciding whether to have the baked beans or tinned spaghetti toasted sandwich at lunch. Only to be always crushed on finding that yes, there may be two tins in my drawer but no, they are of the same contents – usually the one didn’t choose.

Don’t get me wrong, their lives are not peachy clean or without heart-ache and worries, and they both work bloody hard at what they do to as well as being probably the most divine friends in the known universe.

But as I will return tonight to a home that looks like an abandoned derelict student-furniture-filled abode, trip on a truck, impale my foot on a piece of lego and survey the wreckage of a life filled with choices I made, it dawns on me that there are times when the feeling of your life taking place in quicksand are heightened so dramatically, you feel you can’t even draw a decent breath.

I know that sensation will pass, that my kids will run at me with such glee that I am home and regale me with stories on their playground antics (normally involving a war or kung-fu fight of some sort) and how the best part of their day was me coming home, and I know my Lindy-Lou and Bob will return a few years down the track, but sometimes its just nice to wallow.

Friday, yey.

What happens when your dreams and plans don’t come to fruition. Is it an issue of fault or che sera sera?

sometimes letting go of the passion, letting go of the ideal is so much harder than just letting it simmer away in the recesses of your mind as reality rolls over your body day after day. Like the sensation of entering the surf and waves hitting you, pulling you down as you force your way out further and further.

Are the waves of reality there to be fought or there to surrender too? Or maybe that is the life question – and whichever you believe determines the path ahead.

All I know is that I want to be cared for, want to be loved, want to be in someone’s mind constantly. Conceited? Needy? Princess-like? Hmmm. The weird thing is, nearly all of us are cared for, loved and thought about – but we don’t see it, hear it or even want it. once again, bizarre.

Weekend time.

This is my Heckler piece from The Sydney Morning Herald that appeared last year. I was very VERY excited – and am now a little discombobulated that it was actually a year ago!

Concrete jungle looks more like little house on the prairie

October 7 2002

Whatever happened to business chic? In her foray to buy a new wardrobe, fringes, florals and flounces lay in wait for Kim Palmer.

I’m not sure what has happened in the fashion world, but last time I looked Australia – and, more pertinently, Sydney – wasn’t the wild west.

Nor was its summer climate breezy enough for multi-layered denim constructs.

Admittedly, my wardrobe for the past four or so years has been predominantly focused on surviving small children.

We’re talking no whites, no crushable fabrics, nothing that requires dry-cleaning, and easy access clothing – not for amorous moments, as I had to keep reminding my husband, but for the apparently endless years of breastfeeding.

Now, as I venture back into the real world of paid work, a desk to call my own and the opportunity to drink an entire cup of tea while it’s still hot, the suits from pre-breeding life are just not cutting it.

So off I went. For the first time in four years I was in a shopping centre, on my own, with what felt like limitless time to browse, try on and, deep breath, buy clothes for me.

I was almost giddy with delight, with that heart racing sensation you get when you feel you’re doing something really naughty and you’re just waiting for the hand on your shoulder (similar to the sensation of secretly scoffing chocolate in the pantry and being caught out by your four-year-old).

But as I drifted through racks of clothing I felt more giddy-up than giddy. I know Madonna did the cowboy boots, hat, tassles and gingham shirt in one of her more recent film clips, but are we seriously meant to wear these things in real life? It’s one thing for a cool legend of rock to bootscoot on a film stage, but for us mortals to wear it all to work?

It’s as though all the TV shows that I grew up on are materialising before my very eyes.

From Little House on the Prairie, through Swiss Family Robinson to some scary constructions that look way too Eight Is Enough for peace of mind – there they all were, hanging on racks, laughing at me.

Sydney is humid, diabolically so come January and February. The long, denim, panelled – panelled! – skirts will be like wearing a wool-lined Drizabone in a sauna. Don’t say you weren’t warned.

There is no place, on any body, for horizontally panelled white skirts. Think back of the bus, think “does my bum look big in this?” and answer “yes, and so do your thighs”.

White suits – what are we thinking? I even saw white stilettos in a window display. I didn’t know whether to point and laugh or admit defeat and cry.

Has no one watched porn lately to know that, unless you really want the hooker look, they are to be avoided at all costs?

Then we go off-the-shoulder and into the bizarre world of one-shouldered tops. I blame that blonde-haired creature from Big Brother who did the off-the-shoulder thing with everything and tried to compensate for that fashion disaster with another – lip gloss. Formally known as fly-ointment.

I just don’t get it. One bare shoulder in day wear looks ridiculous.

For evening – I’m thinking Grace Kelly or Audrey Hepburn – sure, it’s a sexy winner. Even the Baroness in The Sound of Music came up a treat, but in day wear it looks as if you’ve lost a sleeve. That, and you always end up with one boob sitting higher than the other, although that could be a personal problem due to the aforementioned years of breastfeeding.

Anyway, I was crestfallen. After a day of uneven hemlines, things that looked way too much like the 1980s for my sanity (I was beginning to expect a torn T-shirt with ‘wham!’ scrawled over the front, fluoro bobby socks and bubble skirts to appear) and clothes that were simply ugly in design and ugly in colour, home I went.

Of course, my husband was thrilled.

A day of shopping and not a penny spent – talk about your dream wife!

So as I go to work in my suits, skirts and shirts from about six years ago – thrilled they still fit and even more thrilled that my investment in classic lines and looks has paid off handsomely – I’ll sit tight for the florals to disappear, the flounces to deflate and sleeves to make their comeback.

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.