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.


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  • Mrs Woog

    Oh sweet Jesus Kim. THat all sucks balls. I do not know how you manage. Much love to you and O and call anytime you need to ok xx

  • http://mythreeringcircus.com Tiff

    sending so much love.
    Tiff recently posted..Just with fewer options.

  • Carrie

    I hear you..hugs xx

  • http://www.denysewhelan.com.au Denyse Whelan

    Oh bugger that …not fair – not anything except horrid & never ending to have your son with such complex & differing needs that there’s only one person who can see it through …..that’s you. And there IS only one mum . God I hate the run arounds, the tying of pieces of info that YOU & only you can do . It really is not good. At all. And that you do as well as you do for as long as you do is a credit to you… You are truly amazing. My heart goes out to you Kim. Wish I had a golden pot of $$$ for you too…sadly not. Denyse x
    Denyse Whelan recently posted..Schools’ Week. Day 3. Books I Read To Kids.

  • http://jumbledstuff.wordpress.com/ Lisa

    Geez. It sounds just diabolical. Take care.
    Lisa recently posted..Challenging pessimism

  • http://www.tummyrumble.net Reemski

    sending you hugs
    Reemski recently posted..The Arrival

  • http://www.lifeanddandelions.com Annieb25

    Oh love. I had no idea you had so much on your plate. Sending you love but really wish I could send you money and medical assistance. I hate that the amount of money we have determines our position in the medical care food chain. Shouldn’t be this way. xxxx
    Annieb25 recently posted..I want to crave you …

  • ArtistKnownAsSawHole

    Oh darling. That is fucking terrible.

  • http://re-inventingfashion.blogspot.com/ Jody Pearl

    It’s not fair and you have every right to be PISSED!

    I’m so glad you have your Blog to vent through and you have us in Blogland as a soft place to fall – I know it’s not money in the bank or food on the table however I’m hopeful that you are aware collectively we’re listening and not judging and between us there’s always a shoulder to weep into and arms to wrap you in the biggest group hug you’ve ever had!

    I have no doubt that through sheer strength of will & determination you will push yourself and Oscar through this and if a bit of kicking & screaming, tears and a tantrum or two gets you noticed….GO FOR IT – just be careful who you call a Cuntula!
    Jody Pearl recently posted..Latest REinvention – The Boobs & Bottom Jumper

    • http://www.allconsuming.com.au allconsuming

      Thanks lovely. xxx

  • http://www.peskypixies.wordpress.com Pixie

    Massive hugs
    Pixie recently posted..Not good.

  • http://www.twomonkeysfabricshop.com.au jodie drescher

    I thought I was having a tough week. This puts my pitaful worries and struggles to shame!! Thinking of you and your family xx.
    jodie drescher recently posted..Welcome to Two Monkeys

    • http://www.allconsuming.com.au allconsuming

      Nah, we all have our loads dude. Don’t lessen the impact of yours just for the sake of mine.

  • Linda

    distance prevents me from being able to cook you a meal or drive your children to and from whatever or clean your dunny.

    however, i need to take some sort of action to show support for you and your family so i have just deposited a ‘care package’ directly into your bank account. use it as you see fit.

    this is not charity – this is the bloggy version of a hug so suck it up Kim!

    Note to other readers – if you are able to do the same – email Kim and ask for her banking details. i did consider posting her banking details but decided that might be going too far.

    • http://www.allconsuming.com.au allconsuming

      STOP IT. xxx. Thank you.

  • http://questionsforwomen.org Paula Petralunga

    I wish I lived closer to you Kim – to help in any way. I think you’re amazing – you ARE a wonder. Most people would have well and truly shattered by now.
    Deep Breath and sending you out a big hug (even though it’s a bit useless).
    xxx
    Paula Petralunga recently posted..Reality TV has a lot to answer for.

    • http://www.allconsuming.com.au allconsuming

      Thanks lovely.

  • http://www.duyvken.blogspot.com Amelia

    What a tough day. Sending you love, A.
    Amelia recently posted..Listening to…

    • http://www.allconsuming.com.au allconsuming

      Thanks bloss. xxx

  • http://saltycrunchybitterfresh.blogspot.com/ Kathy

    OH DUDE. It has been a very bad week in Special Needs Parenting Land at my house too, but with us it’s all mental/emotional/brain chemistry stuff and based on the very few times I’ve had to do the hospital/needles/physical thing with mine, I honestly don’t know how you are still walking and talking right now. And I am appalled to learn that the insurance situation for stuff like this is as screwed up there as it is here. WTF is wrong with the world that we have to tear ourselves to shreds to get BASIC NEEDS met for our kids just because they don’t fit the assembly line mold?

    I am thinking of you every day and sending all my love. I wish I could help in more practical ways.
    Kathy recently posted..An update for your Tuesday

    • http://www.allconsuming.com.au allconsuming

      You are an absolute treasure and I adore you. You know that right?

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  • http://magnetoboldtoo.com kelley @ magnetoboldtoo

    love you.

    Makes my heart hurt.
    kelley @ magnetoboldtoo recently posted..It’s OK.

  • http://Www.mommyadventures.net Mommy adventures

    Did they give him those patches you have to wear for a while, but numb the area so you don’t feel the cannula going in? I didn’t know those existed until my 2 year old needed a cannula. She didn’t feel a thing. Didn’t even flinch when they stuck that needle in. Yes, they are awesome. If they didn’t give one to your son, next time tell them to. All the best, I hope he gets better ASAP.

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