Sunday, 31 July 2016

Stepping through the waves


Come here RIGHT now.’ 

I have epic respect for parents juggling multiple children.  Particularly on holiday.  If it was me, I’d probably opt for a subtle walk down the beach for some flip flop flinging to be honest.  It’s a constant parental balance – the weighing up of discipline and the desire to just let it go.  This time it was the result of some impressive ball skills from a boy on the beach.  Unfortunately (or fortunately depending on his intent) the inflatable ball connected perfectly with his unexpecting little brother.

But it was the boy’s response to his mother’s reprimand which caught my attention.  Partly because it drew a subconscious nod of respectful agreement from the lad next to us.  ‘But mum…didn’t you see it? It was a crack shot!’  

Hard not to laugh at his very valid point, which completely missed the point.

There was a time I wouldn’t have laughed.  I would have wondered.  I would have wondered every time I saw children play together. Saw them fight.  Kick footballs.  I would have had the same though.  ‘Where will he be?’

Actually a more specific thought.  ‘Where will he be when he’s five?’  I don’t know why five.  There is something round about it.  Five year olds are little people, not transitioning toddlers. They have primary school sweatshirts and ask surprisingly challenging questions.  They do actual lessons and talk obsessively about everything from cars to superheroes.  They eat ice cream and are easily influenced by the call of fast food chains with zip busting advertising budgets.  They suddenly decide they want a pony and that the tiny patch of garden next to the garage is a perfectly reasonable place for one to live.  That’s just what five year olds do. 

Most of the time.

Unless you have a five year old with a range of disabilities.  Then five looks very different.  It is the age when the gap grows.  When the pushchair becomes a wheelchair. When education includes the word ‘special’.  When it’s time to let go of ‘catching up’.

This week, my boy turns five.  Five. 

We are there.  Much of the wondering is now a reality.  He can’t yet talk.  He still hasn’t taken his first independent steps.  He has daily seizure like episodes that aren’t going away. The gap isn’t going to close.  His medical condition won’t be ‘cured’.  It won’t be discovered that this is something treatable.  It is a genetic condition, be it still one with no diagnosis.  It is, quite literally, part of who he is.  In his DNA. It’s not sad, it’s not a tragedy – it’s a five year old little boy, doing things his way.

So we have celebrated by letting him do just that – by doing the things that he loves, his way and by finally coming good on a long standing promise.  Almost exactly three years ago, we took our almost two year old on a holiday to Devon.  Classic British holiday stuff – sand everywhere, ice cream everywhere else and more than a healthy sprinkling of rain.  He loved it.  Absolutely adored it.  But most of all he loved standing in the waves on the one sunny day we had.  He was able to confidently bear weight through his legs when we held his hands.  He was close to taking steps in hand and we easily waded him into the water as he laughed hysterically at each rising wave and the pull of the sand under his feet.  But the water was cold, the clouds headed in and all too familiar spots of rain started to fall.  ‘Next time,’ we promised, lifting him out of the water. ‘We’ll do it again.’  We didn't.
By that Christmas, our happy little boy was very unwell with unstoppable neurological episodes that the doctors struggled to pin down to a name.  We watched as ability after ability slipped away.  His familiar sing song babble was gone.  Then he was struggling to sit, or play with his toys like he used to.  When we lifted him onto his legs, they buckled under him immediately.  Even his trademark gasping laughter became a rarity. Whilst some doctors remained optimistic that we would find a way to treat this, others were more direct. 

Thankfully, with a lot of medication, a bucket load of help and some very steely determination from a very small person, he regained those skills.  But slowly.  Gradually gaining strength. Firstly standing gingerly when held round the waist.  Then gently edging a foot forward, in regulation issue supportive boots.  Then gaining confidence, clearing the trip hazard masquerading as a rug with a full step, whilst holding our hands.  And for the last three years there has been a photograph of a little boy laughing in the waves sat on our bookshelf.  A photo that should have just been another holiday snap, but became so much more.  The one I would nod to on home visits from physiotherapists when talking about what ‘he used to be able to do’.  The one that offered both hope and fear in equal measure.

But finally, we got to keep our promise. A promise that at one point seemed near impossible.  We spent a week on a slightly windy, but wonderfully sandy British beach.  The water was bloody cold, the waves were slightly higher than my maternal self was entirely comfortable with and the rain still fell.  But this time, we stayed.  And he stood, holding our hands, edging us further in.  And he laughed.  A lot.

And so, as he turns five, I realise just how futile speculating and wondering about where he will be really is.  Because the future is totally and utterly unpredictable.  It is unpredictable in ways I couldn’t even have fathomed a few years ago.  Because when I did all that worrying and wondering, there was so much I didn’t know.  I wish I had known that non-verbal does not mean unable to communicate.  That my boy would still have obsessions and questions, just brought to my attention differently – with a quizzical look, a well-rehearsed pouty face or a huge happy grin.  That unable to eat independently does not mean unable to participate.  That he would spin round at a mere sniff of ice cream.  That unable to walk does not mean unable to play, or take part.  That given half a chance my son would have a pony taking up residence on the driveway.  

With no diagnosis, the future is completely uncharted.  So instead, all we can really do is celebrate the here and now.  So as he turns five, celebrate we will. And perhaps update a much loved, slightly dusty old photo on the bookcase.


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