For Awareness day this year, Alison wanted to share her poem about her son Joshua.
Last night I watched you sleeping and I wondered what you saw.
Do you dream in colour? Are you running? Singing your favourite songs?
I’ve watched you lose your eyes as your world fades into blur. I forget that our worlds are different, that the array of colours aren’t there for you anymore.
My face is not as you see it… and yet still you smile.
I’ve watched you lose your voice from first words to chattering to gesturing when the words wont come. We guess for you. Do we guess right?
Inside are you screaming, yearning to say what you want… and yet you smile.
I’ve watched you lose your legs. From that first time riding your bike, days spent running through the fields to struggling to take a few steps, surrounded by equipment and aids reminiscent of your great grandparents, at the end of their lives.
But you’re not. You’re at the beginning. …and yet you smile.
I’ve watched you lose your place, as best friends move on. Picking schools and planning futures, you will never know as you watch from the outside.
Are you yearning to join in?… and yet you smile.
A smile so beautiful that anybody who meets you instantly falls in love with you.
A smile so powerful that it drops light into an otherwise dark day.
One day I will watch you leave us, only God knows when.
Hand in hand, I will cling to the memories of those smiles
Days pass and the tears fall, I try to mirror that smile, to echo your strength but inside I am screaming this isn’t fair! This is too hard. I can’t do this!
…and then you smile.