It was the best of weeks, it was the worst of weeks

You know, never in my wildest dreams of during one of my most creative catastrophising episodes would I have pegged that week of hydrotherapy, physiotherapy and general misery as a turning point in my parenting and indeed the final chapter (still playing out mind you) in an episode in our lives I would look back on as one of our best.

I know, it’s like I’ve been watching too much Oprah and am about to show you my inspiration board.

Such was Oscar’s anxiety during that week of first – first standing in six weeks, first weight bearing in that time, first steps, first getting down (and back up) to the ground, first putting bare feet on the ground – and such was my having to be cruel to be kind – no.more.wheelchair., no, we’re walking, keep going – that part of me was mourning the time he was in the wheelchair and being such a legend.

But then I realised that not only did Oscar taking those first steps, even though he was scared and even though his muscles must have been screaming at so rudely being called into action, he did keep going. The word ‘resilient‘ is getting a work out in this house like ‘journey‘ does on any reality TV program.

But something else happened that week. Something wondrous.

The nursing consultant from the chronic pain team visited us. The chronic pain team are part of the pain management unit who visited us post-op and this time around had dropped by because we’d run out of Gabapentin and because it had been that team who had requested it, it was them who had to determine what happened now. Thank goodness I say as when I mentioned it to the registrar she was all, ‘oh we should get him off that as he won’t have any pain issues now’.  

This nurse – Dave – is an absolute legend. Full of information and knowledge and interest in Oscar and what a difference we’ve seen in him since starting the gabapentin. For you see, while that drug was initially designed as an epilepsy medication it is useless as that but incredibly effective in treating neuropathic pain and indeed, anxiety.

Then he gave me a lesson in what neuropathic pain really is – that it is a dysfunction of the central nervous system – but most importantly how much more they see chronic neuropathic pain conditions in kids with cerebral palsy (CP).


Long story short, medical developments such as the use of botox in children with CP means many such kids are not undergoing orthopaedic procedures until adolescence and in turn, the pain clinic at Sydney Childrens Hospital are seeing much higher rates of chronic pain disorders in these kids than in others. Apparently Melbourne’s Children’s Hospital are seeing the same trend.

It makes sense really – here you have children with issues of the brain getting the right messages to parts of the body so messages regarding pain may well be compromised as well.

He spent some time explaining the different pain pathways of the body, about the ascendant and descendant pain messages the body and brain send and how pain and anxiety are very close relatives indeed.

He asked if Oscar had any ‘hot spots’ or areas of the body he didn’t like you touching. Um. HELL YEAH. Anywhere on his head, neck and shoulders, the small of his back, his feet. Hence haircuts being hell, trying to get him moving along by a coaxing hand in the back or a gentle (or firm) push results in a meltdown of epic proportions and the putting on of shoes always being a nightmare.

Oscar’s teariness. His anxiety, His total over-reactions to non-painful situations as paralysing pain.

All of it, ALL OF IT, ties back into this faulty pain identifying and resolving system.

I can not find the words to express how liberating this information has been. The aspects of Oscar’s personality that we find the most difficult, the most debilitating to him and the most disruptive to us as a family are not something we just have to live with. To bear.

It can be managed. We can teach him strategies to minimise it. We can use strategies to off-set it. It does not have to be how it has been.

My mothering of this child has been completely re-energised.

At the moment we are – obviously – focused on getting through the rehabilitative phase of his surgery. The Gabapentin goes a long way to helping minimise his neuropathic pain in his feet and his anxiety about the road ahead. We are using phraseology and approaches that are less, ‘come on Oscar’ and more ‘tell me how it feels’ or ‘you tell that brain it is OK’.

Down the track there will be psychologists and exploring other ways to help Oscar liberate himself from the debilitating grip chronic pain can hold over his life. The pain specialist and nurse both know our paediatrician well and have already made contact with him to keep him in the loop with what their thoughts are about Oscar and the way forward.

So you see? There were tears and tantrums. There was me being the enemy and that he hated me and that he was going to run away (I kid you not, this kid’s language has come on LEAPS and BOUNDS. Even if it is to tell me he hates me and is going to run away). There was me forcing him to walk, talking tough while inside my heart was breaking, coaching him along.

But there was Oscar seeing what he could do under the most difficult of circumstances.
A family galvinised that we are in this together (Jasper’s kindy teacher told me how on Monday he filled her in on Oscar’s progress, that he was home and that now he can walk when before he couldn’t and all these other things he couldn’t do but now can)
There was me acknowledging my son is capable of so much more than I previously thought.
There are new relationships forged with therapists and medical professionals.
There is a new bond between me and my Oggaboy that had been worn down through years of just wading along trying to make the best of some pretty shitty circumstances.
There is hope.

The best of times indeed.

Onward.

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  • Yvette Vignando

    Very few situations convince me more of the incredible power of unconditional parental love than the emotional energy needed to parent a child with a disability. Days of revelations when you find a new way of helping your child, or communicating (if that is the issue), or relieving them of pain must be oases in a rollercoaster of love and concern, tiredness and elation. More power and more peace to you.

  • Red Dirt Mummy

    Oh Kim. This is such a beautiful post full of love and hope and fresh energy and I'm torn between wanting to cry because of all your've been through and wanting to punch the air and yell out 'YEAH!' Onward indeed.

  • Suse

    As I was reading I was thinking wow, leaps and bounds!

    And then you said it 🙂

  • Paola

    Reading your posts is learning something, each and everytime.
    I am so glad to hear the good news, discovery, hope for the future to come.
    Onward indeed.

  • jac

    Yay Oscar! That is so encouraging and so promising for the future. Go nurse Dave!

  • Badger

    OH DUDE. I have always said information is power, especially when it comes to parenting wonky kids. The way you felt learning about the pain stuff is EXACTLY how I felt when we got the boy's diagnosis. Like OMG, all of THIS is because of THAT and THAT has a treatment plan! Other people have it! Doctors know what it is! There is stuff we can do!

    So hell yeah! ONthefuckWARD! And go Oscar, go!

  • Three Owls

    great post and really well written as always… I think it's really encouraging that he is going to 'run' away… good job mama! Thanks for the warm fuzzies 🙂

  • sooz

    Such great news, and gosh what a difference a good specialist can make in changing the frame you see through! I think resilience is exactly the right word, and it is an enormous strength, as well as an enormous hurdle when it comes to change and growth. I feel like the mountain the big O has to climb is like an iceberg and we can only see the tip and this latest bit of information has allowed you to see a little more of the enormity of heat he's been facing. Great, great news.

  • blackbird

    I am gasping with joy.
    Truly.
    This is a magnificent discovery – I cannot wait to hear about all he moves onward TO!

  • samantha

    I've said it before but it should be said again – legend status for your family. Resilient isn't the half of it!

  • Alison

    Onward.
    With energy.

    You are an absolute star.

  • Mary

    Tears in my eyes.

    A wonderful post to start the week and to re – invigorate my own mothering.

    You are made of amazing stuff our Kim.

    And our Oscar too..

  • Duyvken

    Woohoo!! Super stuff, Kim, and so lovely to read.
    Love to you all.
    A

  • Jodie

    onward Miss Kim, ever onward !

  • peskypixies

    how absolutley wonderful.
    I am so thrilled for you all but esp you and Oscar.
    onwards and upwards from here on in!!!!

  • Leanne Scrapper

    That is so great – my son has Asperger's and we don't deal with anything as huge as you guys but having that knowledge is such a wonderful and yes, liberating thing – 'Oh – that's why that happens! It's not just him being a pain, it's cos of this and we can cope with it better now that we understand!'

    You are an amazing family 🙂

  • kurrabikid

    Kim, you're amazing. What a great post.

  • Veronica

    As someone who suffers from neuropathic pain episodes, I get how Oscar was feeling previous. Flapping hands, screaming if you touched a hot spot, that kind of thing? Yeah, I do that because it hurts. It honestly feels like the nerve endings are on fire and being touched not only triggers pain, but it triggers a panic attack because of the pain. I'm on medication now too and it's been a lifesaver.

    Walking! Well done!

    And I am so so glad that you're in a good place now. It helps, so so much.

  • So Now What?

    You are such a top Mum!! Here I am whinging about a poo on the toilet floor. Note to self, stop being a freaking whining cow. 🙂

  • Anonymous

    This post, the lump in my throat and the tears, put me in mind of that moment in "The Miracle Worker" with Annie Sullivan and Hellen at the water pump, when Hellen gets IT. All that IT implies for the future.

    God bless the Annies and the Daves of the world, and all the people they help.

    ErinH

  • Tania

    WOW. Just bloody WOW. Shaking my head, putting myself in your situation with a grin on my face and a lump in my throat – look what putting one foot in front of the other does! Look what happens if you just keep going!

  • tiff(threeringcircus)

    Beautiful post. Hope is so wonderful!

  • Uli

    Late to the commenting, but this ha me with tears in my eyes too. In a distressing but great way. I'm so glad you all have this information and see a way forward.

    Amazing.