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.

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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"

Wednesday, 13 May 2015

A Special Holiday - Making Every Moment Count

It was our first family holiday after a time when we thought we'd never have a holiday again. 

In fact it was our first family holiday shortly after a time when we thought we'd never be happy again. 

It took some persuading to make us go.

We were scared, really scared. 

We'd been told our son would die in childhood. At one point he wasn't expected to make his second birthday. 

And when things started to get better we were too scared to believe it lest the walls came crashing back down.

We'd been living on a knife edge for so long.

We recognised the overwhelming need to make happy family memories but were terrified of the consequences of our ‘risky’ actions. We were torn between wanting to make every moment count and the fear of something catastrophic happening while we were away from home. 

But our wonderful palliative care nurse coaxed and persuaded. The charity React provided us with a lovely little caravan by the sea. We went prepared with notes and documents and back up plans; details of local hospitals and ambulance response times, a car packed with life saving medicine and medical equipment. 

That holiday was magical; a week in Wales by the sea.  The sun shone every day; there wasn’t a single cloud in the sky.

We laughed, we played, we relaxed, we had fun.

We made memories we can cherish forever.


***** ***** *****

This post has been written to mark Children’s Hospice Week (11-17th May) in conjunctions with the charity Together for Short Lives.  This year’s theme is about ‘Making Every Moment Count’ focusing on how precious time is for families by capturing moments in time.

Facts about hospice care & life limited children:
·         Most children need round the clock care – 24 hours a day, seven days a week
·         Families need support so they can make the most of every moment together
·         There are 53 children’s hospice services in the UK providing a lifeline for families
·         Children’s hospices are bright and happy places focussing on helping families make the most of every moment
·         Children’s hospices are all charities that rely on public support

Our local hospice has been a huge source of support for us.  You can find out more about Acorns and the work they do here: Acorns Children's Hospice.

Get involved:
You too can take part. A social media campaign will run throughout the week encouraging people to share the moments that matter to them by posting pictures, videos and comments on Twitter and Facebook, using #momentscount. Your moment could be a wedding, a celebration, a party, with friends and family or a career highlight... anything that captures a moment in your life that you would like to share.

So come on – share some of your precious moments using #momentscount too.