The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

A Special Memory

I thought for a while what my ‘special memory’ for this week’s special Saturday would be.  I have lots and lots of memories, some wonderful, some sad, some poignant.  I thought of how I held my beautiful newborn baby in my arms or the joy, tinged with fear I felt when we took him home from the neo-natal unit.  But these, and other early memories, were before we knew that he was different from other children, that his future wouldn’t be quite the one we envisaged for him.  In the end I settled on a beautiful memory that is all the more special because of that difference. 

Many parents recall their babies’ first smile.  Often it is before they reach six weeks, so they can pass that first all-important six week check at the doctors.  My little fella ‘failed’ that first test and was rescheduled for another check up two weeks later.  By this time, I had convinced myself he had smiled at me, though I suspected it was wind, I desperately wanted it to be a smile and so told the doctor he had.  In actual fact he ‘smiled’ for the first time around the nine week mark.  But in all honesty, he wasn’t a particularly smiley baby; reflux left him in a lot of pain and if he wasn’t crying, he was sleeping.  On those occasions when he did smile, they never appeared to be appropriate or in response to anything – they’d be aimed above our heads, to the corner of the room, at thin air ... anywhere but at us.  Eye contact was fleeting at best.  We later discovered he was visually impaired.  Whilst his eyes themselves were fine, the brain couldn’t make sense of the images it was receiving.  Effectively, we were told, that left him blind.  We were devastated.  There was however, room for improvement, as he grew older and his brain developed, it was hoped that his brain might start to process the images and he might begin to ‘see’.  He didn’t respond to sounds appropriately for the same reason.  His brain couldn’t make sense of the noises.  Whilst he could hear and startled at loud, sudden noises, sounds like our voices, toys and music held no interest for him.  He wouldn’t turn to the source of the sound and these too failed to raise a smile.

I remember sitting one evening in the living room.  It was early winter and the curtains were drawn.  I had the little man on my lap.  I was talking to him in that sing song voice people always reserve for babies and jigging him up and down.  And suddenly, out of the blue, he smiled.  But the difference, oh the beautiful, wonderful difference was the way his whole face lit up.  His previous ‘smiles’ paled into insignificance in comparison.  They were nothing but meaningless, automatic contractions of facial muscles.  This though was different.  This smile filled his face, creasing right up to his eyes, which sparkled in delight.  He looked at me, I mean really really looked at me.  And it melted my heart.  It was a warm hug that reached right into my very soul and in those few precious seconds he seemed to say ‘I know you – you’re my mum, and I love you’.  I cried then, as I am now writing this, at the wonder of that tiny miraculous expression of happiness.

My son was 9 months old when he first smiled and it is a very very special memory.

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