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Living with Luke 19

July 31, 2013


I was looking at pictures of Tiddles the other day mainly from when he was a baby.  There is a definite change in the little boy that was born to us and the little boy that became Tiddles the Orang-utang (later ‘Silverback’).  The baby that was born smiled and laughed, genuine joy and delight in his face and especially his eyes.  There was a light in his eyes which brought his whole face alive when he smiled and he had a laugh that was just beautiful to hear.  Compare that with pictures of the little boy that went to Narnia and it’s immediate that the light has gone, or at least dimmed significantly.  The eyes are elsewhere, no longer interested in the here and now, but looking off into another world as if waiting for the chance to escape.  I’ve stated before that it’s almost as if that little boy has been replaced by a changeling, but really it’s more like that little boy is still there but perfectly happy to be trapped inside his own little world.

Tiddles has been very ‘shouty’ just lately.  Things have upset him or frustrated him to the point where every other sentence has been shouted in anger or annoyance and to be honest I hate it.  But there are a lot of things that I hate about Tiddles’ condition.  I know some of you may read this and think that ‘hate’ is too strong a word, but when you deal with this every single day, you need an enemy to hate so that it makes the triumphs all the more rewarding if and when they occur, which isn’t often.  So yes, I do hate.

I hate when Tiddles shouts and screams, because there is nothing I can do to help him, because 99% of the time he can’t tell me what the problem is.  I hate that I am not the father to him that I wanted to be.  The father I started out being, but was denied when my little boy was whisked away from me.  I taught you to swim Tiddles.  I taught you to ride a bike, to read, to get dressed, to talk.  I walked up and down with you when you wouldn’t sleep and I read to you when you could.  But I could’ve been a lot more if we had had the chance.  And I hate that we didn’t.  I hate that you are getting older and bigger, that your voice is getting deeper, your legs hairier, because it means that you are moving from boy to young man and it is so unfair that you are no longer able to do something as simple as sit on my shoulders for long periods of time when you are tired.  I hate the thought that one day you will be old and grey, but even then when everything else is gone, you will still have me battling to reach you and to protect you.  If Narnia is where you want to be thenso be it.  I will defend you forever.

I am your dad.  There are things about my life and yours that I hate, but that fact will never change.  I am your dad and will forever BE your dad.  You may not acknowledge that but it won’t change that it’s true.

So, Tiddles if you are ever wondering who it is that’s watching out for you and looking over your shoulder?

It’s me…your dad.



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  1. Karen Thomas permalink

    Hi Steve, I have just sat and read your story, Im not going to sit here and say how sorry I am for you because you have been given the gift of a child! yes your child is a little bit broken….. but a beautiful life has been put in the safety of your care. Im not a bible preacher or doctor just a normal mum with 2 daughters.
    Your story has sad times, laughter, good and not so good memories/times just like ours and we all want the very best for our children…. but what we want for them and what they choose isn’t always the same, I do understand your sons conditions as I have worked in childcare for over 20yrs and worked with many different children covering a wide ranges of needs. It sounds like you punish yourself everyday because of what you want for him, what your memories should of have been?? well unfortunately you have different memories from what you expected… why are these so bad? because there not what you wanted for him? didn’t he laugh? wasn’t there any good times? you taught him to swim! ride a bike! I think you have great memories!! Stop putting pressure on yourself with your expectations!
    Children are all different and come in many shapes and size’s, some love to cuddle some don’t… my eldest always cuddled me, however my youngest just didn’t like to be cuddled and would push us away… I still loved her and I never doubted she loved me, I had to steal cuddles when she became ill which happened on roughly a monthly basis (she has a rare condition which makes her ill every 4-6 weeks called Periodical fever syndrome) What Im trying to say Steve is we only get our children for so long… you have probably been given longer? make the most of it.. take on board the things you CAN do together and not the things you don’t! Stop looking in the past and the ‘might of beens” and make the post of the here and now!
    You don’t want to be old and grey thinking about “If only” grab life by the hands its here for but a moment!
    I know I don’t live with a child with Autism and I know i’m not seeing this from a fathers view… But I don’t feel you have lost either! it sounds like you are a great dad doing what dads do, you worry, you care, you provide, you cry, you laugh….you need to look at what you DO have and not at what you don’t…. You have Luke and another son and in their own ways they both love you!

  2. You’re a great Dad, Tiddles is lucky to have you in his corner!

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