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…

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.


Comments

  1. Lovely post.What a lovely way to finish. Its wonderful that you can still be positive through your struggles.

    Jemma x

    #Sharewithme

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    1. Thank you Jemma, it's not always easy but I do try to find a positive

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  2. As I read this post I felt the tears well up inside me not because of the heart breaking times you have been through with your family but the joy and love you have experienced because of that heartache and to feel kind that love is a wonderful thing that few people can appreciate you are truly blessed.

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  3. Beautiful post so full of emotions. You are so brave and strong to share your story and stay positive through all that you have been through, go through and have in your memories. Thanks for linking up to Share With Me. #sharewithme

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    1. Thank you Jenny, though I don't feel brave or strong. It's just our version of normal now I guess xxx

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  4. What a wonderful positive post despite the challenges in your path. Thank you for joining #SENDBritmums

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  5. A beautiful way to sum up the experience of those early years, it rings so true to me too xx

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