Category Archives: Oscar

Challenging times. Again.

Oscar is back in hospital with the same infection in the same leg. The exciting development this time around was he developed (he had?) sepsis – which is what they call septic now. Just to keep us all on our toes he ended up in the domain of machines that go ping, ICU.

He wasn’t there for long, I’m unsure if that was because he got better or because they were as skeeved out about his “incontinent stools” as I was. Nothing tests your maternal ties more than incontinent diarrhea, particularly when it happens all over a bare mattress, in the emergency waiting room (“nurse, you’ll need to wipe down that chair”) or in emergency (“I keep wiping but you’re not stopping” as you witness a squirt of liquid mustard “incontinent stool” then burned.onto.your.retinas). Finally the adult nappies came into action and sweet baby cheeses I bowed to them in all their depressing reality.

You still with me?

We’ve clocked up a week so far and there seems no end in sight. Everything seems to happen in polaroid snapshots.

The well-intentioned but idiot paediatric registrar who relatively late last night tried to show his authority around the processes we’re currently going through. Fuck off buddy, we’ve been here before.

The same cars in the carpark – the fancy shiny brand new Range Rover, two identical mini Coopers, another transporter like ours, a huge country ute with serious storage gear on its tray, wicked spotties and mud on the wheels. Once you’re sick it doesn’t matter what car you drive.

The confusing reality of your man-child. In a paed ward when really he should be in an adult one. Having to help put his penis in a wee bottle. That hairiest of hairy arses. Showering him. This is the hardest thing of all.

Confounding doctors. You don’t ever want to be the case that confounds doctors.

The only good news in this is that he is getting better.

The reality is IV antibiotics for another 4-6 weeks. We’re not going home until his elephant leg looks totally like a normal one. We’ve already been here a week. They want us to see the orthopaedic specialist who operated on his feet. The thought, the merest suggestion he might have to have surgery again makes me want to eat my own head.

I don’t think he’s going to make it back to school this year.

I have an overwhelming urge to bake.

 

Onward.

 

 


RaRas

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We’ve become a rugby union family and that’s that. We have tried all the codes and arrived at union and nothing could make me happier. The season is just getting underway and so far all games have involved rain and biting wind. Perfect rugby weather.

Grover is as obsessed with rugby this season as he was with cricket in summer. His coach told me on the weekend he’s the best player on the team because he concentrates. Ahhh, so many other codes, so many of my other children sitting on the field picking blades of grass. I don’t care its the U7s, I’m taking that pass for parental gloating and running with it. He won man of the match last week so his coaches comment allayed my fears he may have peaked too early.

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Felix is U14s this year and there’s just a bit more pressure and expectation on them all. They were season premiers last year so there is a reputation to uphold. He trains 4 times a week, twice at school, once with reps, once with club and loves all of it. To me he’s evidence of a teenage feeling – and being – connected in a way that makes them feel good about themselves and a part of something. Off he goes, size 12 boots and all.

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So why have I fallen so hard for this sport? I think the first sign I had was Felix’s very first game. He came off after a couple of minutes and the age manager got down to Felix’s height and gave him the biggest rap. A pep talk with praise and advice. I was sold. Then there was the fact Felix was good at it, that helped I guess.

Did I tell you about the time we went to Maroubra to visit M and went for a swim? Oscar disappeared on me which was alarming until there he was, standing with one of the lifeguards directing people in the ocean to move back towards the flags. Grover turned to me and said, “Oscar makes friends wherever he goes”. Never a truer word was spoken.

All of Felix’s team mates have always accepted Oscar, none of them “briefed”, just a simple case of “that’s Oscar, Felix’s brother”. At rugby he stands with Felix’s coach no matter what. Rain, sunshine, good match or bad Oscar is there and C doesn’t mind one bit. So this season he approached me and said he had a spare jersey and would it be OK to give it to Oscar. WOULD IT.

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Onward.


The week that was

It was a mixed bag of a week with hospital visits, the last of communal showers, the promise of a new job, visits to the psychiatrist and a dreaded foot-dragging appointment with the dentist.

Two weeks ago Oscar has surgery to remove the hardware from his left foot. It was the suspected culprit for the many cellulitis incidents Oscar has had in that foot. Indeed, when the surgeon was removing the screw he said it was a bit loose (boom tish) and it was his gut feeling that was the reason why the cellulitis had taken hold.

The upshot of all this meant, in my eye, one thing. Showering. The foot couldn’t get wet so every.single.night we’d have to wrap it in two plastic bags, negotiate our way into the shower and then I’d have to shower him. It’s been awful. Having to wash your 15 year old’s arse and pits is as galling for them as it is hideous for you. Our mutual hatred was in the red zone.

Still, it’s all over, the wounds have healed beautifully and we can now work on getting Oscar to walk on that foot properly again.

Chef has the promise of a new job in the new year. It’s not confirmed as yet (I thought it was so am now fretting on his behalf) so if you can chant/bay at the moon/pray/take a virgin I’d greatly appreciate it.

I finally voiced and wrote in a public place that our business Allconsuming Food has to go on the backburner. Chef is being worked like a dog at his current establishment and my tank is empty to be running it. It’s still there, it can wait patiently for some more love and attention down the track.

I saw my shrink this week. Did I share with you I’m on lithium now? I’m on lithium now. I feel like a bona fide batshit crazy lady being on it but, as my shrink said, it has given my mental health a floor, a stability that basically the rest of this year has not had. We’re still working on the meds in the light of the fact my life’s resting level of stress is stratospheric. How much do we go biological and how much is the psychological/emotional is a dance we are currently having. We shall see. At least I don’t want to top myself so that’s a fairly large improvement.

Finally there was the dentist. Dear GOD I hate the dentist. Today was just a clean (HIDEOUS DRILLING OFF OF PLAQUE) but he did look at the molar which I’ve chipped the corner of and told me I need a crown. $1,300. Can you hear my eyes rolling from there?

So anyway, how was your week?

 

Onward!

 


Quite something

Today the Australian Parliament passed a bill that turns on its head the way this country has treated people with a disability. The National Disability Insurance Scheme (NDIS) turns our current system on its head, from one of ‘please Sir, can I have some more’ welfare to one which recognises them for what they are, people. It makes a vital change in the whole mentality around disability services by turning it to one of support being an investment not charity.

It will be a medicare type scheme providing a secure and consistent pool of funds for services and support to people with a disability.

Many people think that already exists.

No, what exists is a yearly allocation of funds. Those funds run out half way through the year? No matter, go onto the waiting list. But oh, yes there’s quite a few before you so you might not be successful next year either. But maybe the year after that!

That scenario was told to me at an early information session on the NDIS by a mother trying to secure an automated bed for her profoundly disabled adult son. Those beds cost several thousands of dollars. When she queried what she was meant to do the service suggested she approach a charity or maybe hold a fund-raiser. For her son’s bed.

The NDIS has been a concept kicked around our hallowed halls for 40 years. Something people have given lip service to but not much more.

I do not care what your political leaning, I do.not.care. but this Government is the first to actually action it. The first to say this is important, to say to the four million or so Australians who have a disability that they matter.

To grasp the scale of that, those four million people equates roughly to the population of Melbourne. Then consider the 2.6 million Australians who care for family members with a disability. Now you’ve got the population of Victoria.

As soon as you hear someone start to say how great it is but gee, how we can fund this, how we can pay for it I want you to tell them you’re talking about the population of Victoria. You’re going to turn your back on an entire State?

I want you to tell them that ALMOST HALF of people living with a disability in Australia live in poverty or very close to it.

Tell them the median income of someone with a disability is HALF that of someone without a disability and that even though the number of people with a disability grows, participation in the workforce for the sector has remained unchanged since 2003.

I want you to tell them that they are witnessing something of magnitude, something other countries will look to, a true moment in time for our political and social history.

It is the sign of a civilised society.

If we need to make some hard calls to make it work then that is what will be done.

Not because it’s nice, not because it makes us feel good, but because this is about ensuring no one gets left behind. That no matter what dodgy chromosome you were born with, or whether you can hear, or see, or walk or talk, YOU MATTER.

Now the scheme won’t cover all of us. It is designed to support the most severely disabled among us. I actually wonder if Oscar will be eligible but that is of little concern because there are so so many who do.

At the end of last year I spoke at length with Senator Jan McLucas, Parliamentary Secretary to the Prime Minister and for Disability and Carers. She’s been working on disability matters since 2004 when a raft of recommendations were made after a Senate Enquiry into disability services but even then she said they knew they were “tinkering at the edges”.

The NDIS looks at the individual and their needs over a lifetime. It gives families one point of contact and while it doesn’t sound like much it means families only need to provide the history once. It’s about investing in the individual. “We want families to stay strong, stay together and be supported as they want to be supported,” she said.

Some states – WA and Tasmania – actually have a model along those lines. Jog it in WA and Tas!

For the rest of us it will take some time with pilot programs starting in five states to get it underway. One of the most exciting aspects Jan told me about the scheme is that the system will be one that looks at the individual’s needs at that point in time. At the moment you have to re-invent the wheel at every milestone.

“If you’re a 6 month old child with Downs Syndrome the support is essentially to the mum and dad. Totally different to a 16 year old with Downs and then extrapolate that to when they’re 26. The focus on the person will be much more acute but we’ll also be viewing the person in their environment,” she said.

I hope people not impacted by a disability grasp the gravity of that.

ABC story here.

ONWARD!

 

 


Fifteen

Somehow we went from this:

Apparently I was 12 when I gave birth

Apparently I was 12 when I gave birth

Oscar at 1 month old

Oscar at 1 month old

To this:

Fine specimen of a teenager

Fine specimen of a teenager

Oscar was 10 days old when they told us he had a rare genetic disorder. We were having cuddles with him, something so precious in the Neonatal Intensive Care Unit, and I looked down at him thinking all the while, “I can’t fix this, this is in every cell, every structure, every drop of blood coursing through your veins”. I looked at the doctor and said, “But he’s perfect”.

There have been plenty of moments since then where I have felt just as hopeless.

The nursing educator of the unit, a wondrous woman, told me with a steely edge in her voice which meant business that if all of us had our genes tested it’d throw up some pretty interesting findings and to just raise him and treat him just as we would did we not know about his dodgy chromosome four.

And here we all stand, 15 years down. It’s so easy to look at Oscar – and indeed any person with special needs or a disability – as a series of deficits, a catalogue of failed milestones, of endless worry. But I’m still not sure how that actually benefits Oscar.

So who is this boy of mine?

His best mate is Josh.

He loves WWE wrestling, AFL, soccer, playing xbox and listening to music.

He is outrageously nosey and social. He knows all our neighbours – some of which I still haven’t met.

He has a heart as big as an ocean.

He’s good on the tooth.

 

For me, the greatest challenge is to not just parent the disability. It is so easy to fall into the functional – trying to bed down routines can take (and still are) years, the doctor appointments, the therapies, the assessments – that I forget the teenager wanting to listen to his music, hang out with his friends and flex the freedom I so easily bestow to his younger brothers.

How do you loosen the reigns when the potential for disaster is so great?

I know two families whose disabled children are now in their 20s and they tell me they’ve just had their worst year ever, both due to issues of mental health. In the Christmas break I witnessed Oscar having what I thought were fairly obvious anxiety attacks but he can’t articulate it and I don’t want to put words in his mouth.

Mental health issues and an intellectual disability. How you like them apples?

But you know what, it is what it is.

I have to look to Oscar – is he happy, is he stimulated, does he feel like a part of something, does he feel loved, safe and secure – and take my cues from him. And when I do that? I think we’re all doing ok.

In this house we might fall down seven times but we rise up eight.

Manchild

Ogga

 

Onward.

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