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Living with Luke 4

April 27, 2013


I came in from work yesterday.  Tiddles the Silverback was sitting in a chair, singing the end theme from’Stingray’ – (“Marin-a-ha, Aqua Marin-a-ha, what are these strange enchantments that stay close to my heart…”), and the conversation went like this…

“Hello Luke!”

“Goodbye Daddy…”

And so my weekend had begun.  Not only does Tiddles not bat an eyelid when I go out, but he doesn’t care about me when I come in.  Such is life.

And yet…he sat with me for about 5 minutes later in the afternoon, laughing and playing with me, and I want more of those times.  I hate that he sees me as an annoyance or an interruption in his life, but I bear with it because I know, or I hope, that it’s not ‘him’.  Occasionally I get to see glimpses of the boy he might’ve been.  The cheeky, funny, charming boy he could’ve been had fate dealt him a different hand.

Tiddles was 2 and a half when he was diagnosed with Autism, and the bottom fell out of my world.  But I was determined that he would have as normal a life as I could possibly give him.  We’ve never had a lot of money, so whatever I could do for him would be on a budget, but he would have as much as I could provide for him.  He would grow up an autistic, ‘happy’ child.

And then, in February of this year he was diagnosed with Epilepsy. Cue world crashing down around me again…

‘Ha!  Sucker!  Did you really think it was going to be that easy? Take that you mug!’

It came out of the blue.  One day he was an autistic boy and the next he was an autistic boy with epilepsy.  As if the poor little ape boy didn’t have enough already to deal with.  To be honest though, Tiddles deals with it very well, sticking a cat-like metaphorical two-fingered salute up at his condition(s).

How do I deal with it?  At times, not very well.  There are times when I wanted Tiddles to stay at age 12 forever, just so he would be able to enjoy the life he has or had at that time, before puberty and the shadow of epilepsy fell over him.  I silently rage at the universe for daring to do this to my son, for putting him in this position where he is out of sync with my world.  He is out of phase, and I want him here with me.  But that may never happen, and from the moment 12 years ago when he was diagnosed to now and every single second from this moment on for the next 100 years, my life and his are mapped out.  I know exactly where he is going to be and even if he doesn’t care, he knows exactly where i’ll be.

Tiddles, whether I like it or not, is getting bigger, stronger and taller and more of an man everyday and it’s down to me as his dad to deal with that and everything else that his future life entails.

Am I scared?

I’m Steve Hannam!  I’m an ex semi-pro wrestler.  I weight train 5 times a week and risk injury diving at the studded boots of Sunday morning footballers on bone dry pitches.  I’ve swan dived from 10 foot platforms onto piles of sacks and fallen from 30 foot sets attached to nothing but a rope.  I’ve been beaten up, bloodied, dislocated shoulders, broken fingers and STILL come back for more.  And you want to know if i’m SCARED??

I’m terrified…


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