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Living with Luke 17

July 10, 2013


‘Don’t you worry, don’t you worry child.  See Heaven’s got a plan for you…’

I love those lyrics.  Seemingly so full of optimism and hope.  When things aren’t going so well, they feel like the sort of thing you might say to your own child in an effort to get him to see that although things are not great right now, there IS a plan in place for your life.

But these words aren’t for Tiddles.  And this is a slightly different blog this time around, because we aren’t the only ones who Live with Luke.  TCMH and I were old enough to deal with the shock and ensuing sense of loss that we felt at different stages of our lives, but the OTHER person living in the household had to grow up a lot quicker because of it. 

The Eldest Child was 2 and a half when Tiddles was born.  A beautiful blonde toddler, who was excited to have a baby brother, he came running into the hospital on October 22nd 1998 to see him.  This was the boy who, when TCMH wanted to tell me she was pregnant again, gave the specimen stick thing to him and who promptly placed it in my coffee cup.

However this was the same boy who at 5 when his brother was diagnosed, sadly gave up having a playmate without any fuss.  This was also the same little boy who accepted that Tiddles was now going to be the centre of attention from here on in, but not always for the right reasons and that he was, possibly, always going to take second place in what he wanted or needed. 

As he grew up, The Eldest Child grew fiercely defensive of his little brother, taking issue with those people who ‘didn’t understand’ Tiddles’ condition, arguing with some and risking physical violence with others at school with some of his comments about how stupid some people were.  Thankfully, he came through unscathed, but it would’ve been a testament to his determination that he would’ve taken the blows just to prove how ignorant these people were and indeed are even now. 

He is quite open and even proud about Tiddles.  There are some siblings of special needs children who immediately distance themselves from the child.  Not because they hate them, but because it doesn’t suit their image and they want to be seen as cool.  Not The Eldest Child, who stuck by and continues to stick by his brother, in spite of the hassle and upset that Tiddles can cause.  Ranging from being woken up at 4am to DVD’s being ‘borrowed’ and scratched to buggery to treasured possessions being smashed and broken, The Eldest Child has after the initial disappointment accepted the losses and moved on with the grace and dignity of somebody far older than his years.

As I have watched him grow up and become the beautiful, handsome young man that I see today, I often wish that things had been different for him.  He will never have a brother that will support him as he gets older, nor will he have somebody he can talk to, or have a laugh with or even ask for help from.  In a sense he is on his own.  I will always be there for him however, as I am for Tiddles, because The Eldest Child deserves somebody to watch his back for him and to be his biggest supporter along with TCMH.

To anybody reading this, The Eldest Child is a boy who deserves your friendship, who deserves your respect and deserves your love, because he is somebody who has put up with losing his brother to Narnia from a very young age, but did so in the only way he knew how, with kindness, with love and with dignity.


Sail on silver boy, Sail on by.  Your time has come to shine.  All your dreams are on their way.  See how they shine.  If you need your Dad, I’m sailing right behind.  Like a bridge over troubled water, I will ease your mind.

We all Live with Luke in our own ways and all love him knowing that he is in his own little world, and may never fully return that love to us.  For some of us, we have had to give up a lot more than we care to admit.  So, if you see him and you feel the same way as I do about Jake Steven Hannam then do what I do every day that I am blessed to have this wonderful boy in my life.

Give him a hug. 

Cos he deserves it…


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  1. Andie Frogley permalink

    Oh sweet Jake, I do not know you, but I know another in similar shoes, my middle child. Sure, he never knew a life without his siblings, both additional needs (not Autistic, but lots of crossover traits) and my heart strings pull at the thought of the life you lead. You are already an amazing young man who will grow up knowing a lot more than the average adult. Being accepting and more than that, helpful so much more than many many adults.

    I usually try to find time to give my Karl an extra hug, and some extra “I love you’s” because I know that often, he is the forgotten child. The one I don’t have to constantly watch. The one that will just help without batting an eye. He doesn’t deserve to be ‘the forgotten one’, he deserves an angels wings! (he is only 8!)

    Have an extra hug from another parent for Jake xx

  2. My Jake’s name is Alex… and we know just how much Jake deserves that hug. xoxo

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