You gotta hold on

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.

The allconsuming guide to a hospital stay

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.

  1. 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.
  2. Remember to pack your own toiletries. Washing your hair with that hospital strength skin cleanser doesn’t end well for anyone.
  3. 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.
  4. 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.
  5. 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.

 

He is where he needs to be

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.

Inside the fishbowl

I was at a lunch on Friday put on by Oscar’s School of Awesome to celebrate women with a particular nod to those of us who are mother’s to kids with dodgy chromosomes or some other label that indicates their load will be a little heavier and wonkier than most.

It’s not something I dwell on that much any more but Friday made me realise that is simply because I’m now quite used to wearing the coat that is being mum to a kid with special needs. It was really nice being in a room packed with (295 no less) women and feeling celebrated and appreciated. It was not something I had expected.

Our Principal talked about a series of short films made by students two years ago and the sister project of a documentary following the students making the films. I know, SO post-modern. (I don’t even know what that means.) She described how, in the doco, families of the kids were also interviewed and that their honesty in what it was to have a child with special needs took her breath away. She explained that while she has worked in special education for more than 20 years it was this that truly showed her she (nor anyone else who does not have a child with a disability) will never ever understand what it is to be the parent of a disabled child. She then hijacked a staff meeting and made all the staff watch it. All the wondrous, committed, beautiful staff. She said the silence in the room was immense.

I can not tell you how validating that was to hear.

It explains so much. Why she is such a tireless advocate for our kids. Why every single member of staff at the school live and breath our kids and how to help them be the best they can be. Why that place is a place of daily miracles.

One of the things that came from the doco was the concept of being in a fishbowl, that you can swim around and see out and still be a part of everything but there is always this barrier between you and the rest of the world. Similarly people can see in and engage with you but still that barrier is there.

It is such a good way of describing my life since becoming Oscar’s mum.

I remember when we were first told of his diagnosis and internally railing against it. I did NOT want this for my life. I was NOT going to be one of those women, those mothers you see with a disabled child – you know the ones, they’re always so angry, and either grossly overweight or carnie thin, with bad hair, outdated make-up, cheap clothes and did I mention the angry?

I know, even I would have smacked myself back then.

But here I am, swimming around that god-damned fish bowl, regularly head-butting the glass, grossly overweight, no make-up, cheap clothes, dubious hair (it needs a cut) and on occasion very very angry.

I cried on Friday.

And then life went on.

Oscar went over to a friend’s place today to hang out. A first.

His voice started breaking this weekend.

He made me laugh. He made me cranky. He gave me kisses and cuddles. He asked me many questions many times over.

My life will never ever be as I imagined it. Nor his.

And that is OK.

 

Onward.

What have I DONE!?! When good mums think they’ve gone bad

My heart is aching for Beth over at BabyMac at the moment. Her wee little moppet is recovering from having her tonsils and adenoids out and while some would say pfft, routine, I would say FUCK YOU! Any operation with a child which involves post-operative pain management is officially HELLZONE.

You see, you take your cub into a big scary place where you make them wear a dress with no back in it. You’re already on the downward slide in your child’s mental list of favourite people. If you’re lucky the premed makes them all woogily and so you don’t have to endure the (often multiple) attempts at getting a cannula in or the psychologically never-able-to-unsee experience of having to pin your child to a theatre trolley with them looking at you with pure terror as you try to stay calm and reassuring and ‘oh this mask! how fun! just take some deep breaths!’ This comes in a very close third to the awfulness that is seeing your child ‘go under’ when the anaesthetic starts to work which is a very close second to actually witnessing your child stop breathing and watching a resus team work on them.

Yeah, hospital with sick kids. Such sweet sweet memories.

Anyway, Harper’s not opening her mouth for anyone or anything bar the medicine (small mercies) and some juice. It was this fact and a photo of the gorgeous cherub that bought all the memories flooding back.

It started out as one of Oscar’s routine dental procedures but some 2 1/2 hours later the dental surgeon came out saying cheerily, ‘it all went really well, we only had to extract five teeth.”

FIVE TEETH.

The extent of preparing Oscar for this had been something involving a hand puppet of a tiger and a toothbrush. Monumental fail.

The poor kid had gone in feeling absolutely tickety-boo to then wake up in recovery, in a dress with no back, a cannula in his arm and a mouth full of blood and stitches. To say I was the bottom of Oscar’s barrel of awful would be showing a generous heart.

I actually think he went into shock. He didn’t talk, eat, open his mouth for days.  To force in some water through a straw was akin to NATO negotiations to get humanitarian aid into Homs, borderline fruitless.

My recollection is the surgery was a Friday and he didn’t talk until the Wednesday, but that may well be traumatic memory embellishment.

I was beside myself. We’d broken him. There it was, in cold hard brutal truth before us. We had broken him. I cried and cried, buying him ridiculous treats and presents he’d barely even acknowledge. He’s just silently move about the house

There have been a couple of incidents in Oscar’s life which have rocked me, made me question why we did something or why we were doing something, made me feel the lowest of low because far out, here’s a child already carrying a heavier load of Unfair than anyone else and we just go and throw another biscuit of doom onto his cart.

But then the darnedest thing happens. They get better in their own cotton-pickin’ time. Whatever the procedure you’ve put them through damn well goes ahead and achieves what it was meant to (normally) and the self-flagellation abates ever so slowly.

I will never forget the morning after that hideous dental disaster when he came in, stood by my side of the bed and said, ‘Ogga eat?’ It’s something Oscar utters a minimum of 50 times a day but that morning, that day it was the sweetest of sounds I’d ever heard.

 

Thinking of you lovely lady, it will get better.

 

Onward.