Saturday, 13 July 2013


Sometimes it feels like Smiler lurches from one crisis to another, but in reality there are plenty of stable plateaux on the way, it's just these days don't stick in your mind quite as well!  We're on a good stretch at the moment (*touching wood while throwing salt over shoulder and wishing on a star*) and while things are (relatively) calm, I realised how used to certain things we had become ~ health issues that I knew nothing about before I gave birth to Smiler ~ that I knew nothing about when he turned five, or ten.  What will I have learnt about by the time he's fifteen?  When you have no choice you'd be surprised what you can get used to, and even aspects of life you would have thought you would struggle with become commonplace, ordinary boring monotonous parts of your daily routine.

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Smiler's nosebleeds are a great example of the unusual becoming usual.  These had been horrendous at first ~ there was no warning, you'd just happen to look at him and he'd look like a scene from a horror film.  The blood ran out of his nose like a tap, pouring down his face, over his lips and chin to soak his t~shirt.  Because he could feel it flowing over his face, he tried to wipe it off the way kids do if they have a runny nose ~ wiping from his wrist almost to his elbow, one arm at a time, so it smeared over his face, his cheeks, right to his ears, all up and down his arms, over both hands...  Lovely.

I'll never forget the first time I went into Smiler's room the morning after he'd had a bleed in the night ~ blood smeared over the wall, the sheets, the curtains (he'd wiped his face on them!), the carpet, and Smiler laid in his bed, blood over his arms, his pyjamas, his face, his pillow, in his hair ~ it was like walking into an episode of CSI (or Hannibal if anyone has seen that).  Pale complexion contrasting with dried blood, eyes closed, still ~ I thought he had died. 

I've walked into that scenario so many times now, echoing those same footfalls, and for just a couple of seconds it crosses my mind again ~ Is his chest moving?  Can I hear him breathing?  What if I say his name out loud and nothing happens?  But as soon as I speak he pops up like some sort of Halloween jack~in~the~box, and my brain switches out of verging on panic mode to so so much washing ~ time for new carpet? mode and I get on with what needs to be done.  So I shepherd Smiler into the bathroom ~ therefore effectively calling dibs on cleaning the child rather than the room (so much easier, in case you are ever faced with such a choice) ~ call Mr Manley to let him know he needs to do the room (ha ha!), and check if there is a child somewhere around the house that I can bribe to make me a coffee while I supervise a particularly pink~watered extra~scrubby bathtime.

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As time goes by, things that were shocking and panic inducing first time around become worrying by the third time, disconcerting by the sixth and downgraded to a mere inconvenience after that.  

For people living outside of that circle of special needs, it can be hard to see through our eyes, with that veil of experience, and I'm sure that my reaction at least has raised eyebrows before!

Smiler falls over ~ a lot ~ and of course we're used to it.  Sometimes you spy it coming and can grab an arm or a shoulder in time, but more often it's more a case of shouting 'timber!' and crossing your fingers that he won't knock himself out or land too awkwardly.  If he knocks himself out he usually comes round pretty quickly, but we've had the unplanned string of hospital visits because he hasn't used that hand since he fell two days ago, hasn't taken his own weight since he tumbled and banged his hip, hasn't straightened out his elbow since he tripped over his own feet...  Mostly he's been okay, a few minor breaks and some soft tissue damage, but it's the reactions of other people that tend to make me giggle, which I'm sure means I look all the more cruel and heartless!  I guess most folk just aren't used to seeing eleven year olds fall over, and if they do then they probably put their hands out to save themselves, and stand up quickly pretending it hadn't happened.  Smiler, on the other hand, lands face first (putting out your arms is a saving reflex ~ just one of a number of reflexes he simply doesn't have!), then either lays there giggling uncontrollably or simply waiting for someone to come and help him back up!

How about your family ~ are their details of your day to day normal that seem odd to other people?  Do stranger's reactions ever make you laugh?  How about your own reactions ~ have you surprised yourself with how quickly something new can become completely routine?

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