Category Archives: Team Oscar

May 2, 2012

The cold hard truth

Well that last post was a bit of a doozy wasn’t it. Sorry about that, I think we can call that “the breaking point”. I guess the rather obvious subtext of it is that this shit is hard. Then we move into a holding pattern for a while until the next drama unfolds.

Life with a child with special needs – be they physical, medical, intellectual or all of the above – is bloody hard.

Everyone nod sagely at that. Offer a ripple of how amazing we are to rise to each day, an empathetic “I don’t know how you do it”, the occasional “God only gives you what you can handle” from which you should be grateful you walk away without multiple stab wounds from a splintery stick lined with rusty nails.

The most unrelenting part of it is the cold hard brutal truth that it never goes away. Every day this is what, for me, having a disabled child entails:

are you going to wake to a wet bed,
a random epic melt-down triggered by who knows what,
the daily battle to put clothes on,
discovering yet another dawn raid of the cupboard for inappropriate breakfast items which totally decimates the weekly shop you did to.the.dollar. for school lunches, afternoon teas and so on,
waking up at 3am when they’re trying to sneak in some Xbox,
realising they’ve padded next door, outside, in their pyjamas, at 6am and are just loitering around on the corner,
the ongoing issue of wiping and I’m not talking benches,
the complete incapacity and/or unwillingness to dry themselves after a shower. I now have a child with a man penis who still needs help (but doesn’t want it but can’t do it himself) getting dry after his shower,
navigating puberty with a moderate intellectual disability,
is that left foot rolling in again, no not really, oh yes it is, will it need a splint, do we need to have surgery again, we need to see the specialist again,
anxiety with a moderate intellectual disability,
how to occupy them beyond the realm of Xbox and stalking the neighbours,

and on it goes.

Then there are the big picture worries you basically ban yourself from thinking about – work placement, housing, relationships, a happy and fulfilling life.

Stuff just goes wrong with these kids. Their systems are compromised, they get sick, they get inexplicable ailments, they need surgeries and ongoing interventions and regular reviews. It is tiresome, exhausting and emotional (not to even mention the costs involved) to do this with different groups of people over and over again.

You find that you stop seeing their character and start focusing on the mechanics of it all – toileting, anxiety, boredom. It takes you by surprise when doctors, nurses, friends, neighbours all talk about your son so positively. About his sense of humour and gorgeous nature. Sometimes all I see is the fifty million questions asked over and over, the refusal to dry himself after his shower (now probably the cause of the cellulitis. I KNOW), the constant falling asleep on the lounge and then agro lashing out when I try to move him on to bed and so on and so forth.

It takes other people getting upset at seeing your child have bloods done to remind you it’s OK to feel about all this.

This is what it’s like to have a child with special needs.

The way our society works though does not make any allowance for this reality. We need me to be working to be able to feed, clothe and educate our children. We need two incomes to be able to give them experiences and to be able to cope when and if something goes wrong.

There’s no way you can have two adults working when you have a child with special needs. If you do then, well, RESPEK.

So then the self-flagellation begins – he was your first so why did you have any more, you knew it’d be expensive having lots of kids so why’d you have so many. THIS IS YOUR BED.

But then I think we did not choose for Oscar to have a dodgy chromosome, cerebral palsy, a moderate intellectual disability or a penchant for foods high in saturated fats to be consumed before dawn. So why then are we, why is HE, punished for it?

Services and support for the child AND the parents is imperative. I have it because I have a coherent voice, I tend to like being shouty, a clanging symbol. But for every one of me there are 1,000 others without a voice and it’s just not good enough.

This post wasn’t meant to be about the importance of the National Disability Insurance Scheme but it seems important to mention it here. We, as a nation, are at a point where we can truly ensure no one gets left behind. Where for something as simple as splints for Oscar’s legs do not involve me having to go to multiple agencies with my hands out saying, “please sir, can I have some more”.

I escaped the hospital earlier this week with Chef to go to the Sydney rally to support the NDIS. Our Prime Minister was there, I saw her and her remarkably cute security protocol (well played Julia, well played) for the first time ever.

I don’t care what your political leanings are, but this woman, despite every spike laid on the road before her, has put the NDIS on the table, she has made it happen (from next year in fact). It was flagged by Menzies as a necessity FORTY years ago and she, SHE, has been the one to make it happen. I can’t help thinking, ‘trust it to take a woman to make this happen.’

So yeah, my life is quite a stressful one. I am feeling it keenly at the moment and it does not shine a light on the best parts of my character. Don’t hold it against me.

I know many of you want to help us out, please be assured that being here, reading this, getting it, holding it in your hearts, standing up for someone or fighting for what is right for people whose voice is small or broken is enough. It is enough.

Onward.

19 comments | posted in hospital, Oscar, special needs, Team Oscar

May 2, 2012

Day 10

By allconsuming

Yesterday was bone and CT scans and a drug reaction.

Today was a new cannula.

Getting a cannula – hereto known as a cuntula – into a kid with bad veins trumps pretty much everything.

Sure letting a kid die from an infection is negligent but getting a cuntula in is cruel.

I do the tough love thing for about 80 per cent of it because Oscar’s protests are loud and – at 68kg – now quite physical. The kid can make quite the attempt to flee.

The other 20 per cent I tell him what a champion he is and that yes it hurts but it will soon be over and how brave he is. All done with the internal monologue of DON’TCRY DON’TCRY DON’TCRY.

I don’t know, maybe it was because it was Day 10, maybe it was because it took a couple of goes and eventually had to go somewhere there hadn’t been any numbing gel or maybe just because it sucks but I came a bit undone after this round.

When you do this often enough you do go onto auto-pilot. A friend was here the other day when there was a very poor attempt at taking bloods. Her reaction made me realise, remember, that this is a big deal, that it is traumatic, that it really is shitty.

Mum arrived just after it was done giving me time to flee for just an hour.

I got in the car, rolled a cheeseburger and chicken and cheese because if there was ever a time for comfort eating this was it.

The eyes were damp and my heart was still racing.

I could feel the shell cracking. Fast.

I got home, discovered we’d run out of toilet paper and washing powder, that a friend from Grover’s pre-school had not only made the boys a curry last night but also apple crumble. She made my boys apple crumble.

Generosity of heart is all around me.

We missed an appointment on Monday at Sydney Children’s so I had to email and fix that. I asked them about seeing the orthopaedic surgeon who did Oscar’s legs in 2010 at outpatients because we can’t afford to see him privately. (The reason I hadn’t made that follow-up appointment with him after the first incident and which if I had may well have seen us not end up back here.)

I also expressed my concern about Oscar’s left foot and that it is starting to return to the position it was before surgery and that I think he may need an AFO (splint) for that leg at least – and that we need to do that through the hospital too as there’s no way we could afford to do it privately.

We’re now four months behind in our private health insurance payments.

I’m getting really adept at this hand-out, “please sir can I have some more” routine.

Our awesome contact at Children’s got back to me, as did the person he’s referred me to re appointments with the ortho and re splints.

That’s when I just threw my phone down and just gave in to the big heaving sobs of sadness and rage.

We can see him that way but only on this day, there’s a wait-list for AFOs at the hospital so maybe approach our contact at the Cerebral Palsy alliance and then they can put us in touch with a funding body to access to then get an AFO through them but we could do it through the hospital but but but…

E-FUCKING-NOUGH.

I still have to get a new referral for Oscar to see a paediatric endocrinologist as the one we were referred to is no longer there.

I still need to reconnect with The Cerebral Palsy Alliance to get a speech therapist back on board so we can be eligible for a grant to trial a speech device even though we’re already talking to the technology team at CPA.

You want to know what it’s like to have a child with special needs?

Relentless.
Constant worry.
NOTHING being easy – be that accessing services, finding schools, ignoring the idiots

Having a disabled child means that unless one of you is earning squillions, you are pushed further and further to the periphery of society so you have no choice but to beg and appeal for charity, thereby feeling beholden and worthless.

I’m so sick of feeling so fucking downtrodden, of falling down and rising up. I just want to lie down and go – TIME OUT. DO OVER. MAN DOWN. CODE RED.

24 comments | tags: hospital stays | posted in hospital, Oscar, Team Oscar, that'll do pig that'll do

May 1, 2012

You gotta hold on

By allconsuming

We’re officially on Day 9. NINE.

I’m so tired.

I just don’t know what else to say.

People have more than stepped up – friends collecting my children from school and pre-school, taking them to and from football training, cooking meals for my family, bringing me food packages – it has made me cry and just taken my breath away.

I realise one of my survival mechanisms is to be incredibly snarky in my head about the many many idiot parents that walk this earth and happen to cross my path in the paediatric ward of Mona Vale Hospital.

This doesn’t sit well with so many people complementing me on my grace under pressure and good humour through hard times. I mean, I did the lean down hissing yell at Oscar in the shower the other day about how selfish he was being. Mother of the Year thank you and good night.

Today we ruled out the infection being in Oscar’s bones or the hardware in his feet. This is massive. Of course it doesn’t answer why or where the hell the infection has come from but I’m taking a victory where I can snatch one.

Last week I discovered I had been selected as a finalist in the Australian Best Blogs Competition for 2012. This is my second year as a finalist. It is basically the only award that counts for me – it recognises my writing.

And here I sit, the words not coming. I have six half written posts on my laptop. I never do that.

And now, the words, they will not come.

Let’s look at some pictures.

This – Friday Night Lights – has kept me sane this hospital stay. Tired but sane:

I almost walked away from the series a couple of episodes in on Series 2 – so much bad stuff was happening, it was unrelenting and stressful. I got through it and am now just into the fifth and final series. I can’t tell you (and nor can I explain) how invested I am in the characters in this show. It baffles me.

But everyone needs a Coach Taylor in their life. And a Tami Taylor for that matter.

On Saturday I escaped the hospital and learnt I could still use the monkey bars. No really, I did.

I even had to buy gloves for it. Yes people, I own gym accessories:

Finally, I’ve decided I want to be when I grow up:

Hopefully the words will start flowing soon.

Onward.

9 comments | tags: hospital stays | posted in hospital, hospital is to me what Bali is to everyone else, Oscar, Team Oscar

April 24, 2012

The allconsuming guide to a hospital stay

By allconsuming

Those of us with children who have compromised health are well versed in how to survive yet another hospital stay and I thought it only fair to give you all a heads up should you ever be required to endure stay with your child in hospital.

Wear thongs in the showers. It was after a nasty case of athlete’s foot that I learnt that lesson. Look on it this way, it’s like camping without the flies and dirt.
Remember to pack your own toiletries. Washing your hair with that hospital strength skin cleanser doesn’t end well for anyone.
Take your own mug. No matter the diagnosis or reason for your stay, nothing is more depressing than drinking from a polystyrene cup. I also take my own tea bags but I am weird and have been doing this for a long time.
You won’t feel like it but drink lots of water. Back away from the Coke Zero. Your arch enemy of the long hospital stay is the industrial strength air-conditioning combined with stress, sleep deprivation and an appalling diet. Your skin and urinary tract will thank you later. Trust me on this one.
Finally it is best to accept that this interment is solely about getting your child well. Resign yourself to the fact your diet is going to consist of fast food, hospital food leftovers, toast and chocolate. Lots and lots of chocolate. See Point 4 about the water.

It doesn't look like the picture. First Lean Cuisine since 1988. Surprisingly not missed.

Oscar update:

The orthopaedic consult came around tonight at about 8pm. He was nowhere near as scalpel ready as the registrar and is basically advocating a longer hospital stay than last time (I am anticipating 10 days minimum), getting the infection diseases team on board with possible MRI to see if there is something going on deeper in the joint. There was mention of a PIC line and several weeks of IV antibiotics. We’re hardly home free but this is far less brain fart inducing for me than surgery.

Onward.

25 comments | posted in Oscar, Team Oscar, the allconsuming guide to everything

April 23, 2012

He is where he needs to be

By allconsuming

Oscar spiked a temperature yesterday which was kind of weird. Then he wandered lonely as a cloud around the house crying and wailing which was kind of really annoying. I pointed out to my other 99 children that here was a case study on how NOT to garner maternal love, care and affection.

Then he slept for 15 hours which made the alarm bells clang and me berate myself for having such a cold dead heart. Didn’t stop me from harassing him to actually get up, have a shower and ‘you’ll feel so much better’ him.

He kept saying, ‘no hospital’ which I kept putting into the category of “annoying melodramatic manchild behaviour”. Also, file under: Cold Dead Heart.

And then he pointed to his foot and said, ‘ow.’

Remember the last time he pointed to his foot and said ‘ow’? Yeah. That.

So here we are, back at Mona Vale Hospital which I did nickname the Hospital of Hotness after seeing two spunky emergency registrars (hello Mr AmeriCanadian and Mr Scotland) and a rather easy-on-the-eye radiologist. Small mercies, looking for the positive wherever you kind find it and all that.

Cellulitis in the same leg, the same spot, the same same same.

You tell yourself this is where he needs to be.

You think of Eden in Niger and Nat Bass in Ethiopia and thank all the powers that be that the worst you endure are stupid people in Emergency Department waiting rooms with minor ailments that simply require ice, some panadol and a good lie down.

But it doesn’t help.

You know the antibiotics will kick in, that yes, you’ll be in hospital for probably-somewhere-around-at-least- five-days but really, it’s so small fry compared to the Mighty Tiff and Brave Ivy and what so many others contend with each and every day.

But the reality is trying to work out who’ll look after your other kids and ‘oh my God all those clothes I’ve dumped in the little boys room that still need to be sorted’ and ‘how the hell am I going to do my first shift at the kindergarten tomorrow’ and ‘holy crap there’s nothing in the house for the kids school lunches’ and all the rest.

You tell yourself this is where he needs to be.

The cannula goes in with barely a wail – a lot of wimpering and wriggling but no thrashing and wails to rival the hounds at the gates of hell.

The ortho registrar comes around – another ridiculously good looking medical professional. A bit short and I’m not happy with his shoes but having someone easy on the eye say to you, ‘this is very concerning,’ is a little bit helpful.

There’s talk of surgery to remove the hardware in his foot from the 2010 surgeries. (Read about that adventure here, here, here, here, here and me having sex dreams on the floor of Oscar’s ward here, here and here.

There is plaster applied to the leg to immobilise it. The phrase “disintegration of the joint” is mentioned.

You tell yourself this is where he needs to be. And yet all you want to do is run. Grab him and run. It’ll be fine. We’ll deal with it. But you know this is where he needs to be.

You really need chocolate. And suddenly you have an overwhelming urge to cry. This catches me unaware and now, as I type this, I’m sobbing. In the crappy “Parents Dining Area”. I don’t sob in hospital. I save it up for when we get home and yell at everyone instead. It normally comes out in me mopping floors which you know, means that at least happens once a year.

But it’s too much. This kid. This manchild who drives me wild with all the questions and the contradictions of wanting to be a teenager but playing the disability card when he can’t be arsed to pull his own doona up over him when he gets into bed, of following me around like a shadow, of loitering at the boys’ house next door like a lost puppy, all of it. It’s too much. It’s so unfair.

I want to scream FUCK YOU God but I don’t even believe in him anymore so that’s pretty useless. It’s one thing for me as a parent to be dealt the card of a kid with a dodgy chromosome, but to make the child pay for it with needles and pain and doctors and surgeries and a body and brain that just don’t want to work together is just cruel.

But we will be fine. We will get through this. We will rise up from the fall down.

He is where he needs to be.

Onward.