An Impossible Choice: Living with Juvenile Arthritis

It was a weekend of two halves entirely.

Let’s start with the positive and sublimely ridiculous.  I have the best friends, I spent the weekend encased in a snuggle of warmth in the peak district with pals celebrating one of us turning 50.  These are my married buddies and I am always immensely flattered when I am invited along as the single Pringle, because lord knows, I don’t make enough effort with my friendships, weeks can pass in a blur in my world – and whilst no excuse, it just happens and I am fortunate enough to still have friends there when I pull my head out of my ass.

In this weekend, I maxed out on Fancy Dress, please enjoy the visual, ate so much the scales confirmed a weight gain of 4lbs (happiness can be heavy it seems) and laughed till my sides hurt (this doesn’t burn calories.)

I also forgot about Friday, which was momentarily a relief because Friday was, put simply…

A bit wank.

Disclaimer: this blog for many years has been a therapeutic exercise, some journal, I share my minds thoughts with the internet.  The irony being as I shy more and more away from the shrill noise of social media, I still find this place a source of comfort for the thoughts and emotions that bounce around my brain like a bungee on crack.

For me, my thoughts are like a good fart – they are better out than in.

Back to Friday.

I took my youngest (back story – she was born with dodgy hips, missed at the standard bambino appointments, picked up at 18 months, surgery at 20 months, physio for ever and a day, relief from symptoms for a few years and then a gradual decline in mobility and comfort to the present day – and now walking with chronic back pain, has significant
osteoarthritic features to her DDH hip with cystic change in her femoral head and acetabular region)

Go on – say that last sentence after a beer or two…

At our last medical appointment we opted for a full hip replacement, whilst also double checking with a second opinion.

Because I need to get this right for her.

Like every parent in the world, the last thing I was for my child is to exist in a cloud of pain.

Turns out, I may not have a choice.

Our second opinion was thorough, kind, and straight talking.  (Also eye wateringly expensive as we opted for a private consultation.    Think a spa day and a few gins and an overnight stay if you want a comparison….)

Put simply, if we replace the hip now, we could be predicting a long term challenges on mobility and wheelchairs for her future as false hips only last so long, and you can only have so many…..

If we don’t replace the hip now, I am condemning her to more pain for more years.

An impossible choice.

And I’m tired of making these big ass grown up decisions.  My trio have dealt with more medical complications in their lives than most, and whilst I have the luxury of having three gloriously healthy children in most ways – I do wander how many ladders I walked under and mirrors I broke in a former life to have these challenges passed to them.

My positive pants are growing holes….

I’m cross and I’m mardy.  I’m also peri-menopausal and emotional which means I am like a furious ball of fire looking where to explode (literally most nights).

I’m not looking for sympathy. If anything I am offering empathy with parents who have faced far tougher choices.  I know the end to the struggle for me lies in acceptance and cracking on.  But….

That’s still means pain for her.

As I said….

It’s a bit of an arse..

So the weekend was a delight, a means to get out of my head, and into fun, frivolity and a fair bit of Pinot, plus dressing up as a Simpson…

The reality is back, and I am going to own that I am finding this really tough.  I can’t slap a plaster on this and make it better.  My aim is only to minimalise discomfort, and as a fixer, this makes me feel like I am sitting on a pointy stick with sharp pieces of glass attached to it.

The only way to clear my head was to write the words.

And so we go on, for two more years it would seem, another test to my patience and another chance for my little girl to again rear up, and show the whole frigging world what a trooper she is.

Arthritis has a place in our home, it is short term, but for now we have to give it some room.  As always the impacted child deals with it better than I.

As always, we will power through and emerge stronger.

Roll on that day.