Monday, 17 August 2015

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 never expected that.

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Thursday, 4 June 2015

What I remember

Back when the days were dark, I spent most of the time verging between inconsolably depressed and stomach-churningly terrified. I worried endlessly about the future, or more accurately the lack of future for Hugh. I couldn't imagine life without him and yet couldn't bear to think that *this* was it, all we'd have. I wanted to seize the day, make the most of every opportunity, create happy memories, but I was too scared to leave the house and he was too sick most of the time. I remember asking people 'how do you live like this? How do you cope?' They told me it got easier, that you learn to live in the moment, that you cherish the little things. And I had to believe them, I had to believe that one day I could be like them- positive, happy, because if it wasn't true, then what hope was there?

Here's what I remember:

I remember standing by Hugh's bed in a&e, ringing Sean's nursery to say I wouldn't be there to collect him.  Again.

I remember running bare-foot through the hospital, shoes in hand, gasping for breath, racing back to the ward where the crash team were trying to bring Hugh back. 

I remember putting Fireman Sam on the telly for Sean with one hand while I performed CPR and rang an ambulance.

I remember sitting in the corner crying, while Hugh screamed and Sean, just two years old, hugged me and told me it would be alright.

I remember collapsing to my knees in the aisle of an empty church, sobbing, begging God to help me.

I remember feeling sad, 
I remember feeling guilty, 
I remember feeling lonely, 
I remember feeling angry, 
I remember feeling scared.


And I remember finger painting; Hugh smearing red and green paint across white paper to make Christmas decorations, Sean using a paint brush to paint not just a green dinosaur on paper but his whole body so that he looked like the Incredible Hulk.

I remember our Friday night discos- curtains closed, lights off, the disco ball spreading bright pinks and blues and greens around the room, Sean spinning Hugh in his chair as they danced to the music.

I remember cuddles in bed on wet mornings after sleepless nights, watching endless episodes of Peppa Pig. The warm duvet wrapped around us, the boys snuggled together, me sipping warm, sweet tea.

I remember sunny days in the garden,blowing bubbles, watching the little rainbow-filled spheres rise up into the sky, I remember Sean chasing them, popping them, feeling the little bursts of water land on our bare arms. I remember Hugh lying under the multicoloured spinners, watching them turn. I remember the sound of the wind chimes tinkling gently in the wind.

I remember the lights on the Christmas tree twinkling as the sound of Christmas carols filled the house, the scent of cinnamon from the little Christmas sensory box we'd made for Hugh. I remember Sean's excitement as he gleefully picked foil-wrapped chocolate from the tree, just one more 'last one'. I remember the awe and joy in Hugh's little face as he watched the lights dance.

I remember laughing, 
I remember feeling happy, 
I remember seeing the joy in each moment, 
I remember the glow of love and pride, 
I remember feeling blessed.


Tuesday, 2 June 2015

The School Bus

It’s not that I don’t realise that my son is disabled – he’s five years old and still can’t sit up, it’s certainly not what you’d call a ‘hidden disability’, but I just see Hugh.  I have two beautiful sons, just 14 months between them – I don’t look at them as ‘the older one with glasses’ and ‘the small one in the wheelchair’, I just see Sean and Hugh, my two boys.  Every so often though, it hits me again, and I’m reminded of Hugh’s disabilities.
 
It can be little unexpected things that get me, that remind me that life is a little ‘different’ than I expected; two brothers playing football in the park, a newborn baby holding his mother’s gaze lovingly.  Such little things that are everyday occurrences for most people pull at my heart strings and remind me what life could have been like – the life I expected, the life I don’t have.

The School Bus
Then there’s the more brutal, slap in the face kind of reminder – the day the huge hospital bed was delivered, Hugh’s first time in the gaudily decorated torture device also known as a ‘standing frame’ and then today, this – the school bus.


I was prepared to be upset though, I expected it. 

When Hugh was a few days old and I imagined walking to school hand in hand with my two sons, I didn’t anticipate that I’d be shipping one off to special school in a wheelchair.  I’ve resisted sending him on transport for nearly two years now, preferring to drop him off and pick him up myself. I’m lucky that his school is close enough to do that and with a bit of rushing and the more than occasional late mark, I’ve managed to get two children to two different schools.  But I’m trying to get back to work myself now and to get three of us to three different schools before 9 o’clock is pushing it a bit.


"Is the bus here yet, Mum?"
Hugh was dressed and ready in his chair well before the bus arrived, unusually happy given the time of day (he’s not really a morning person).  His bags packed we waited anxiously – or rather I waited anxiously, Hugh chilled out and Sean watched TV. 

We’re on a busy road and the traffic was almost at a standstill as the tail lift on the rear of the bus lifted Hugh and his wheelchair on.  The cars full of parents inched by, watching as Hugh was loaded on.  Memories of the cruel taunts I remember being used in childhood about *those buses* and the people on those buses – you know the ones!  I won’t repeat them.  I wondered if that’s what people saw as they passed.

I saw Hugh smiling out of the window excited about the new sensations and the new experience.  I saw my son going to school on a bus along with two of his class mates, just friends travelling to school together. 


And I didn’t cry. 

But as I took my eldest son’s hand and walked him to school and I watched the brightly coloured bus carrying my youngest son turn the corner out of sight, I admit there was a lump in my throat.


"Bye Mum"