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.