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Living with Luke 9

May 21, 2013


I had a dream the other night.  It’s one I’ve had many times before – different scenarios, but it always ends the same way.  Tiddles is in it, but it’s not ‘my’ Tiddles.  This Tiddles is slightly older and looks slightly different, but much like my little Silverback, this one doesn’t speak either.  He doesn’t speak for the whole of the dream, until right at the end and he goes to open his mouth…and I wake up.  Every time.  Even in my dreams I cannot connect with my son.

I wake up, frustrated at being denied the chance to have him talk to me, angry that I’ve been woken too soon again, but ultimately saddened that this is my reality.  It’s almost as if he has something that he wants to tell me, but cannot until he thinks I am ready and until then won’t say a word.  I don’t know what his idea of ready would be, because as far as I’m concerned I’ve been ready for the last 12 years since his original diagnosis.

Obviously Dream Tiddles feels differently.

Have you ever loved Christmas?  As a boy I absolutely adored Christmas and still do to this day.  I loved writing my Christmas list of presents I wanted, and then the build-up to it all, the anticipation of what was to come, the countdown and then finally, Christmas Eve. I couldn’t get to bed quick enough.  Then the waking up early and the opening of all of your pressies, magic times…

Now imagine there is only one thing that you absolutely want above everything else.  It doesn’t matter what it is, but it’s the one gift that will make your life complete more than anything in the world.  Better still, you’ve been told that you are going to be getting that one thing, promise!


“Absolutely!  No doubt about it.  It’ll even be in the style you want it in as well!”

“Oh my god, I can’t wait!”

But wait you must and the long, looonng countdown begins.  The excitement begins to build and build.  You can see it in your mind’s eye.  You know exactly where it’s going to go and how you will look after it.  Then finally, the day arrives and you tear open the wrapping.  The packaging has a picture of the exact thing you wanted, and you open it up…and it’s not exactly what you thought it would be.

“There you go!” they say, “Hope you like it, it’s just what you asked for…”

“Well, it’s great,” you reply, “but it’s not quite what I asked for is it?”

“What’s wrong with it?  It looks the same to me…”

“Yea, it looks the same, but it isn’t the same.”

“Don’t you want it then?  I’ll take it back if you don’t…”

“God no!  I still adore it, and I know it’ll be fantastic, I just thought it would be…’more’…”

And Tiddles was that gift, fantastic, wonderful and indeed a gift.  Just not what I was expecting.  Having prepared myself for one thing, I had to adapt my expectations when I received something different.  And everything changed.

Our future as Father and Son isn’t set in stone and I am genuinely frightened of both he and I getting old(er).  I sit sometimes and wonder what will happen to Tiddles when both TCMH and I are no longer around.  I love Superman but even Superman gets old eventually, and so who will rescue the world when he’s gone?  I owe it to Tiddles to be his Superman and protect him for as long as I can, and although he doesn’t know nor even care that I have turned my life over to him and his welfare, I will do everything in my power to ensure his future is a happy one, no matter what the cost.

And maybe one day, I’ll be ready for him to speak to me…


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  1. If it’s any comfort, from when my boy was twelve to now, at eighteen, he has grown. He is of course not your typical eighteen year old (far from it) but I see a future and some independence. I will continue to protect him until the day I die but also prepare him for the future, when I’m no longer here…

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