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Living with Luke 6

May 5, 2013

So…

Music plays quite a big part in all our lives.  The Current Mrs Hannam is involved in singing in one form or another, teaching or performing.  The Eldest Child loves all sorts of film scores as I used to and Tiddles the Silverback sings TV theme songs…loudly.

 We were swimming the other day and as is usually the way I swam behind Tiddles to ‘encourage’ him along.  That is to say that every now and again, I would push him and gurgle ‘Swim faster!’ to which Tiddles, being the Cat Simian that he is, swims at exactly the same pace.  In fact if we had swum any slower the lifeguards might have thought we were beached and tried to save us.  Tiddles loves being in the water though, always has done.  This probably explains why he chooses to sing – again – the end theme song from ‘Stingray’…loudly.  As he swam along…

“MARIN-AH-A, AQUA MARIN-AH-A, WHY DO YOU WHISPER THE WORDS THE STAAAAAAAYYY CLOSE TO MY HEARRRRRRT?”

“Swim faster!”

“Are you alright in there, sir?  You don’t look as if you’re moving at all?”

But it’s funny how we associate certain songs with events.  When Tiddles was born in 1998, the song being played on the radio most was “I Don’t Want To Miss A Thing” by the popular beat combo Aerosmith and it’s still his song to this day.  Whenever I hear it, I have to stop and listen to the words, thinking about when Tiddles came into the world.

“I could stay awake, just to hear you breathing.  Watch you smile while you are sleeping, while you’re far away and dreaming…”

And it’s something I still do to this day, because I worry for him.  Actually I’m terrified for him.  I watch him sleeping without a care in the world, dreaming of whatever it is he dreams of, knowing that when he wakes up, he still won’t have a care in the world except where the next Thomas train or bag of Haribo’s is coming from. Tiddles secret to a happy life? It’s all about the Haribo’s. Meanwhile, I check that he’s ok, and that he’s safe and happy. I know that most parents will do this too, but the difference with Tiddles is that he cannot tell me if he’s not.  His condition is such that I operate in the dark 99% of the time with him.  He can have times when he bursts into tears and will shout and scream at everything and everyone but he cannot say why he’s upset.  And that is what scares me about his future.  As I said previously, our lives are linked forever more.  I’ve been given a huge set of keys to try and open a lock that can’t be seen, by a child that cannot tell me where it is.  Every day another key is discarded but another two are added, as every day he gets another day older and bigger.  The occasional snippets of speech are usually lines from his favourite TV shows, but mostly they are indecipherable and not in context of the conversation so I have to guess at what he actually wants.  I usually get it wrong, and a thwack of some description or a very loud ‘NO!’ is my indicator of that.  Doesn’t stop me from trying though.  The other option is to give up, and although I have given up on a lot of things in my past, Tiddles isn’t going to be one of them.  I wrote a letter to him on a course that I and TCMH went on a few years back.  I said that although I would want him to be in my land, that I would do what I could to bridge the gap between our lands so he could visit more often.  I can’t give up trying to be a part of his life just because he can’t or maybe even won’t ever speak to me. As Steven Tyler put it so very very beautifully,

“I don’t wanna close my eyes, I don’t wanna fall asleep, cos I miss you babe, and I don’t want to miss a thing…”

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5 Comments
  1. Kirsty permalink

    Your most poignant yet Steve. Just beautiful, moving and the keys analogy gave me a real insight into what it’s like. He couldn’t be in better hands.

  2. Ants parsley permalink

    Have just read 1 to 6. Unimaginable and humbling. Thank you for sharing and explaining. Your unconditional love and dedication are testament to the brilliant bloke I’ve always knew you were. x

  3. Karen Morgan permalink

    Can I second mr p, I can’t find my own words, this is an incredible read x

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