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Living with Luke 11

June 2, 2013


What DOES pass for a conversation between Tiddles and I? Well, this is a scene from the other morning. I was sitting downstairs having just come back from the gym. Tiddles was awake early, which was unusual as he has taken to sleeping later these days. I heard the familiar pounding footsteps of the Silverback as he made his way downstairs, and he walked into the living room.


“Who for?” I asked. He nodded his head, yes.


“Ok. Is it for you?”

“Tomato Sauce!” 

“Ok,” I said again, “toast and tomato sauce?” More head nodding.


“Yes what?” I asked.

“Yes! Please…” Tiddles said automatically.

“Right, so toast and tomato sauce then.”  Tiddles nodded his head yes once more, as he walked out of the room.

“Marmite.”  He said and then he went upstairs again.

And that was a long conversation…

Sometimes Tiddles, it does feel as though you are standing at the end of a long corridor. I feel that I’m so far away from you, emotionally. Physically you could be standing or even sitting with me, but it doesn’t matter how hard I run to you, I can never seem to get any closer to you. I know that one day you’re going to open the door and pass through it and disappear completely from me and I’m desperately trying to reach you to jam my foot in to stop it closing before that happens.

To you, my beautiful son it doesn’t matter. You have no idea of the pain your condition brings to my life, the not being able to speak with you, engage fully in your lovely little life and just be your dad.  Little by little, I’ve been losing pieces of you, and it’s gotten to a point where I think, ‘What I am doing, because I don’t really have any reason to go on anymore, do I?’  My life, in so far as actually living, has ended.  I don’t live, I just ‘exist’ from day to day.

I look at you sometimes and I wonder if you can sense my grief, or even sense how much you mean to me.  I’m doing the best I can for you, but I know deep down that it’s not enough, and it probably never will be.  I wish I could tell you how much my world is better for having you in it.  I wish I could show you that there is a plan for you somewhere.  But I can’t, and you have no clue in your happy little wonderland of how much that saddens me. 

And nor will you ever, because that’s for me to keep from you. The one job that I can do well is to protect you from my sadness.  To make your life with me as happy as it can be, for as long as it can be, until eventually one or other of our doors closes forever.

You will never have me embarrass you, or be disappointed in you. However, you will also never be proud of me. Have I failed you again, Tiddles?

To be perfectly honest, yes I probably have…


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  1. O no Steve! – you so have not – I know only too well from Allison how draining, tiring, depressing and frustrating each day is. EACH day.

    And how little help there is, so its a lonely ride too.

    I have no idea how Luke’s brother copes, the only ‘comparison’ I have is, again, from Allison and her boys. Charlie was 18 yesterday, a typical student. Or is he? A kind, smart young man, very conciencous and very aware of the impact his brother has and always will have, on his life; his parents won’t be able to care for Jon forever – and would any woman/wife take on caring for such a severely handicapped child – who will by then be a man?

    Miracles – e.g. progress in medicine – do happen, at a price. Let’s hope and pray it may be sooner than later. Sending you all a big hug – Jo x

  2. Gill Pardoe permalink

    How can you even think that mate. ?? You give all you have to Luke and thats the ultimate gift to him. Be proud of what you are and what you do. You give him your love and yourself. You are a great Dad. X x

  3. Hi, I have met Luke and Debbie, I am a friend of Rowen’s and Debbie’s. I really admire your truth and honesty, I know I have felt these feelings with my own Son, they do not last for long and like you our love for our beautiful innocent boys is boundless…your words are an example of the many differing emotions you go through on sometimes a daily basis with Children with autism, especially the non verbal ones….all I have learnt is that they do not ask the same questions as we do and they do not value the same things as we do. they do not see the things we worry about as important..i think love is the ultimate gift we all share with our children. they just show us differently, don’t they? they are a different type of person, so although I do understand every word and emotion you have written, I guess I am trying (rather badly) to help you feel better in knowing they do not see us (parents ) as letting them down, which I feel is a comfort. just the fact you are writing this very personal piece, tells me what a warm, loving and open hearted human you are and as for being a dad, you are one of the best. much love, Kerrie xxxxx

  4. Luke is a lovely young man be proud of yourself and him for without you he would not be the truly adorable young man he is I still have the card he wrote me on leaving school it is something I will treasure.

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