Busted, Pt 3.

Wow, I’m like the Peter Jackson of back injury stories. If you’re interested in the film rights, call me.

Part 1

Part 2

Interludes here and here

 

So it’s now Thursday afternoon and we’re back at RNS Emergency. About 2.5hrs were spent waiting in triage during which time my admiration of triage nurses grew exponentially. Seriously, I’d be stabbing people.

This time when I’m called in the acute section of the ED. “Made it to acute, poppet, the MAIN ARENA,” Chef said quietly as we were ushered in. Monday had us in the “fast track” section. “Fast track” is code for “we don’t believe you” and “you’re wasting our time”. I also call it “If I didn’t have other medical professionals looking out for me I’d be permanently paralysed now”.

Steve’s referral had obviously had an effect. I was moved into ED at around 3. No one, NO ONE, until the orthopaedic registrar came and looked at me until around 10pm. Nothing is more an admission of guilt than silence.

We had a chat. I couldn’t feel him touching the outside of my left leg. I couldn’t pull my left toes towards my head.

He left, reviewed the films from my MRI at the nurses centre stage in the main arena. Chef was watching him through a gap in the curtains and gave me a commentary about what unfolded. The ability of someone to make you laugh when you are terrified was not something I was actively looking for in my life partner but BY GOD it’s a good value add.

Ortho dude returned and Chef now says he knew everything was about to be ratcheted up several degrees.

He gave me a lovely analogy about how our backbone works and that our vertebrae were like bricks but all I can really remember is that I found it irritating he didn’t call the discs the cement (he called them a jelly like substance which sure, is probably WAY more medically appropriate but then let’s just call them vertebrae and ditch the brick shit). Then he started talking about the curtains of bone that protect them and that added to my irritation because if we were going with a building analogy then surely we weren’t up to interior design, these were still part of the structure so wouldn’t it be better to have called them flying buttresses? Also: Fear + Endone.

Then this: You’re going to need surgery to fix it.

Me: Oh. When?

Him: I have you on the emergency list tomorrow.

Me: Oh. So do I go home now and come back? (Also: Fear+ Endone)

Him: No, I’ve admitted you to hospital. When did you last eat?

Me: About 1pm.

(Time check: 11:40pm)

Him: Well, let’s get you some food because from midnight you’ll be fasting and then we’ll get you up to the ward.

And I ate the most delicious hospital tomato and cheese sandwich EVER washed down with one of those little tubs of orange juice my kids think are AWESOME. And cried.

Chef went home, by this stage it had just all unfolded and the boys, who had been at his parents’ place, ended up staying the night.

He came back the next day and waited with me. I was first on the list but RNS is the largest trauma hospital in the State? Country? Southern hemisphere? so Ortho dude had warned me I might have a long way.

It was around midday that Chef’s mum finally ‘fessed up that Oscar was sick. I handed the phone back to Chef and asked him to ask her to check his legs. Was either of them red? hot? swollen?

And yes, indeed, the left one was. Again. So Chef left me to take Oscar to hospital with cellulitis in his left leg for the third time in 12 months. He comes home from hospital today. I’m trying NOT to think about the unavoidable surgeries he’s going to have to have this year to take the hardware that’s in his feet and the likely cause of the cellulitis, even though all the bone scans show otherwise.

So on Friday, February 18 2013, I had an emergency decompression laminectomy at L4/L5 due to “a very large central disc protrusion causing severe central canal stenosis and complete obliteration of the thecal sac. There is severe bilateral recess stenosis at this level.” as Oscar was admitted to hospital with cellulitis and two weeks out from Mum’s emergency knee replacement.

When I woke up in recovery I looked at the theatre nurse watching my obs and said, “I just had spinal surgery” to which she smiled and said I had indeed.

And for some reason as I type this I am crying all over again.

 

Onward, very slowly onward.

all wind, no caution

Not right
Not right

From my experience it takes about three days give or take the nature of your surgery, your age and possibly your upbringing. Definitely your sex. When Norman (yes, in Australia we have mixed sex wards. I’m sure the logic of this came from a committee of bureaucrats with no experience in a health-related field but charged with the responsibility to reduce hospital waiting-lists due to a recent election promise) let rip the most impressive, in length and tone, fart on my first full day on the ward as I waited for my unexpected and some would therefore say emergency spinal surgery it took a lot of concentration and ten-fold in willpower not to laugh.

The funny wears off, slipping fast to repulsion and thereafter benign resignation.

From that golden age we realise we fart and that not only can it sound AWESOME but smell SO FOUL we learn it is something truly only to be enjoyed at home and, if you’re male or me, shared in the company of those you love.

So to come to an environment where the public expulsion of air, with NO regard to if it may or may not be odoriferous, can be quite a shock. Prime factors which change that are pain and opiates. I’d say duration of stay may bring you full circle but while they’re handing you the pills and asking if you’ve passed wind or opened your bowels today, as Norman lets one rip loud and long enough for all of you, just nod and go back to sleep.

Thin line

I dumped my brain on here the last few days. I haven’t done that in a while, I try not to. It makes people feel uncomfortable. It makes me feel weird.

I want people to understand that the little things each day shit me just like the next person but I also want none of us to forget that while we bitch about picking the slow queue again in the post office or the idiot driver who pulls left to turn right (what the FUCK is wrong with people) there are so many bigger fish to fry.

Sure, I spend a large portion of my day trying to ignore the worries and stresses I have about Oscar.

Sure I, as a mother, spend an inordinate amount of time worrying about my boys, particularly Felix as he hits high school and enters a decade of becoming a man all while negotiating puberty, school work, who he wants to be, believing in himself, becoming more responsible, comprehending consequences on a far grander scale that what happens if you flog your brother again, having fun.

I didn’t really have fun as a teenager, my life was a pretty intense one with mum working her arse off and dad being absent but expectant all at the same time. When it all went pear shaped one of my aunts told me I had to grow up now, be responsible for mum, to be sensible and to help. Having fun and being a ‘typical teenager’ doesn’t really come into action when someone says that to you when you’re 11. I was the good Christian Girl going to not one but THREE youth fellowships (really covering all bases) and while it truly did get me through a lot of my teenage rage the pay off was guilt. I look back and think much of my adolescence was spent holding my breath. For the next bad thing to happen, for not being good enough, for letting people down.

Where do these emotions come from? I think they largely come from self, I can see it in Felix, but they are then compounded by external factors.

Fast forward a few years.

Fast forward to now.

I just can’t shake this feeling that I have done it all wrong. I mean, who the hell at almost 40 lives with their mother? Who at almost 40 has to ask for a hand-out from their in-laws to pay for car repairs? Who at almost 40 reduces three of their children’s bank accounts to zero to pay for car registration?

 

I’m doing it all wrong.

 

Where did I imagine my life to be at this stage?

Well, not living rent-free with my mother for one.

Not living pay-packet to pay-packet for another.

Not having to accept charity from friends.

 

Someone said to me the other day that accepting charity from others, help from people is about being humble and that having humility is the hardest virtue to learn.

 

In the last two weeks people have:

– looked after and cared for my children unconditionally

– picked up my kids from school and pre-school and looked after them for me without question

– texted me to say they’re having my kid over for a play, no discussion entered into (so so good)

– dropped off food parcels for my family including homemade dessert

– dropped off food parcels for me, to me, in the hospital

– brought me chai lattes at the hospital and hung out to talk shit and make me laugh

– taken my kids to and from footy practice

– dropped off a toiletries and cleaning products care package – anonymously. With one of those double Cadbury Family chocolate blocks in it. That I’ve hidden. And won’t be sharing. Maybe.

– sent us a crate of Gourmet Dinner Service meals that I keep looking at and bursting into spontaneous tears over. Because re-entry into family life after 12 days at hospital is just as hard, in some respects, as 12 days in hospital.

– sent me texts and tweets and Facebook shout-outs telling me you’re thinking of us, willing us a swift trip home

 

I have been humbled by all of it. Blown Away. Driven to tears at people’s love for us, for me. Bolstered by people’s generosity of heart and spirit.

I know we are blessed, that I am blessed to have a world so full of love and friendship. Plenty have pointed out to me they wish they had family and friends to help them out in times of need (subtext I am so lucky) and they need not fear me not realising, appreciating and being infinitely grateful to have so many holding on tight to the safety net under me, ready to catch me as I fall.

I know everyone has wanted to do this because I know when I see a friend struggling I want to do something, anything to ease their burden just a little.  Sometimes it’s words, sometimes something I’ve made, sometimes my hilarious company. (Remember when I was funny?)

 

So why is it sitting so uncomfortably with me?

Somehow all this makes me feel like I’ve failed.

Having to accept help is about having failed, of not being able to manage, of not coping.

I feel I’ve let everyone down.

That I have done it all wrong.

There are so SO many should haves swirling around in my head.

 

We have some family friends who are the most beautiful people in the world, but bad things happen to them all the time – a child off the rails, poor health, financial stress. There is always a feeling of unfairness when they are talked about, that they don’t deserve all this, why does it happen to them?

I do NOT want to be that family people talk about.

And yet I totally know we are.

I DO NOT want to be the sympathy card. The “Poor Kim”.

SO I just want you all to know I won’t let you down.

I will try harder.

You will not have to keep picking me up  or carrying me.

I will not let you down.

I will not fail.

 

Onward.

 

 

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.

Day 10


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.