K8 the GR8

When my eldest kid was two months old, they told me he’d be disabled.  They said that the reason he’d been kinda jippy and acting strange was that he had a rare epilepsy disorder called Ohtahara Syndrome.  He’d never go to mainstream school, in fact he’d never talk, or walk, or be the kind of kid I was expecting him to be. Seizures would get worse, and a lot of his life would be spent in hospital. BAM! The information slapped me across the face like a wrecking-ball.

I and his daddy repaired to the pub across the road from the hospital.  We met two prophets disguised as a drunken prison convict and a drunken ex-policeman who helped to stitch up our new scars.  They bought us many pints and told me I was pretty with my red blotchy tear-stained face and snotty nose.  The convict stole my shoe and held it over his head, teasing me like a kid.  The distraction worked a charm.  When I returned (with both shoes) in my drunken discombobulated haze to the cot where this tiny helpless soul lay, I sat wide-eyed until the wee small hours thinking it all over.  That was the worst day of my life. 
He’s five years old now, yes he’s in a wheelchair and he doesn’t talk in any language you’ve heard before, but he doesn’t have seizures anymore, he goes to a better school than I ever went to, and he’s a bright ray of sunshine in everyone’s life who knows him.  We’re well used to things the way they are.  I don’t look at other five year olds anymore and wonder what my kid would be like if he’d been okay.  Going back in time would be futile… I wouldn’t change him for the world.  We’ve met so many amazing people in the last five years, between new friends and helpful organizations, that we would never ordinarily have bumped into.

I wasn’t aware of disability before I had him, wasn’t aware of all the families with such a different take on reality.  My friend noticed the looks of sympathy we got from strangers as we were strolling around one day and got angered.  She felt like shouting at them to point out their ignorance, but I’m used to that.  You’ll get folks with disabilities who are extremely sensitive about their ailment, and will correct you or try to make you feel un-appreciative of the gifts you have, but I think a bit of honesty goes much, much further.  I find it easier to understand that folks are just curious, that they don’t want to make a disabled person feel uncomfortable.  There are others, of course who ooze sympathy on every encounter.  Now this annoys me.  At a recent function, I was accosted many times by people telling me how sorry they were for my troubles, he must be such a burden, how do I cope?  I smile and tell them what they want to hear.  They don’t understand that he isn’t heavy because he’s my son, and it’s a real gift to be able to care for someone like him.

Kids are the bee’s knees when it comes to honesty.  “Why can’t he talk?”, “What’s wrong with him?”, “Can we use him as a goalpost?”… now these are all questions I can handle, and I like to think that perhaps they are gaining experience, and they won’t think disablity is such a weird thing as they grow older.  I have a two year old girl now, who went through a tear-jerking phase of hitting her brother out of frustration that he wouldn’t play with her.  She would collapse in tears and her baleful look would ask me what the problem was.  She seems to understand now though… she leaves toys on his lap, shouts ‘SHUDDUP!’ when he cries, and kisses him when he comes home from school. 

What I’m starting to think of late, is that maybe the prophets I mentioned above weren’t a coincidence.  Maybe I’m looking after the key to a higher power, or a spirit on a different level.  As you’re reading this, unless you’ve met Sean, you probably won’t know what I mean as it’s very hard to describe.  Maybe my mum put it in the best words.  She got right up close to her grandson and whispered;

“Say hello to God for me!”

I tried to write a poem about Seán, but the words won’t form.  So here’s a picture of him instead.