CC Issue 38 / Reflections


Edward waiting

I’ll never forget the time he waited.

Mum and Dad had been away for a holiday, gone no more than a week. Edward and I were at home, and they were due back some unspecified time later that afternoon. Having had a cup of tea I wandered upstairs and saw him sitting on a chair looking out of the window. He was looking down the street, and it wasn’t long before I realised he was waiting. Anticipation for the return of our parents drew him to that spot. As his head began to rest on his arms, his eyes remained fixed on the job in hand. Love and longing stripped away the activity and emerged in patient expectation.

It was such a simple thing but it has remained imprinted on my memory. As I read Suhail’s wonderful review of Derek last week I was reminded why that is so. For Edward is my brother, and he has Down’s Syndrome. He has an additional copy of chromosome 21, which in some sense makes him ‘disabled.’ Yet like the character in Ricky Gervais’ new ‘dramedy,’ far from being the weak outlier, the anomaly, Edward is my hero.

For Edward joins Derek in the rejection of pretence. He has nothing to prove. No pride to shore up. No underhand motives. What he is is what you get, and what you get is devoted kindness that surpasses anyone else I know.

As he sat at that window all Edward did was love. Nothing more and nothing less. He gained nothing from that hour at the window. He achieved nothing. Even as I photographed him the ego did not rise up to squash the attention on the other. As one author has put it, he had mastered the art of self- forgetfulness.

From the freedom of the self flows unreserved joy: joy in others as I hear the undisguised squeals of delight before I see him as I come home; joy in the simplest of things as unwrapping a tenth successive DVD of Dr WHO still induces the same hyperventilation of pleasure.

Kindness, self forgetfulness and joy. Who do you know who could have these as number 1, 2 and 3 most prominent characteristics? There can’t be many. Don’t misunderstand me, Edward is not perfect. He occasionally has some fairly sexist views about the washing up, and an unhealthy importance is attributed to watching the daily episode of Diagnosis Murder. His teeth grinding drives me to distraction. But he is my hero.

Hero. With no irony. In many ways he is weak and dependent and not ‘cost effective.’ He takes more from the tax payer than he puts in. If you had a baby diagnosed with his condition you could terminate him any time before he was born, no questions asked. But with his kindness and self forgetfulness and joy he gently destroys our ridiculous notions of heroics and success. As Derek’s delight in the snail on the beach stands in stark contrast to the resident daughter’s insipid pursuit of a 5 bedroom house, Edward’s joy at completing his 567th Painting by Numbers gently mocks the slightly disappointing £5000 holiday in the Maldives. As he waits by the window he asks why most of us are too busy to do the same.

‘But the fruit of the Spirit is love, joy, peace, patience, kindness, faithfulness, gentleness and self control. Against such things there is no law.’ Galatians 5:22-23

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