The little mission church that we had moved to set up stood a few hundred yards from our house. It was a 30-second walk but that stroll each Sunday morning carried with it the purpose and vision of the mission field all the same. Before we were born, Mum had lived in Africa working alongside a nun and a Dutch monk, Brother Tarcisius, caring for polio victims across Ghana. Together they worked with a multitude of children whose limbs were missing; rehabilitating them, teaching them to walk and study and doing what they could to throw off the superstition that disability is a curse from the gods.
Dad had also been working in Africa, at an outpost called Gulu in Uganda, just as Idi Amin was making his bid for power. Dad stayed there, dispensing his medicines in some backwater hospital, dodging a misplaced attempt on his life, before returning to England and training to be a teacher. But the heartbeat of his faith never dwindled in its missionary vision.
Returning from Africa, both of them chose to settle in the south west of England and, at a Christmas party of mutual friends, this tall beauty in a floor-length blue dress captured Dad’s eye, and apparently also the gaze of every other man present. She, having recently featured in the pages of Tatler Magazine, looked every bit as unreachable as women like that seem to be – until he heard her speaking about life working with Voluntary Services Overseas in Africa. Their friendship crossed the breadth of class division and the two of them discovered love, faith and a mutual desire to live life’s adventures to the full.
Of course, we all have our own idea of how those visions will look. And when they actually unfold they tend not to be the picture we dreamed up. So I am sure that, when they began talking about the far-off places in the world to which they could go and make a contribution, they had no clue that the exciting pull of non-government organizations (NGO) job opportunities would give way to the needs of their own son and his particular disabilities.
I was the eldest child; four years later my sister, Rosalind, arrived. Between us was Alastair, the crumpled, five-pound bundle that my father held in the palm of his hand, before the doctors realized something was wrong and rushed him away for tests. I was too young to remember it but along the way I absorbed the two stories my parents tell of that time. Mum, lying in her hospital bed with an inexplicable lack of feeling or love for the baby she’d just born, until the doctors brought Alastair back to her along with the news that they had diagnosed Down’s syndrome, at which point she reached for this tiny baby and love came rushing in.
Dad’s story is of the following Sunday at church, where he was playing the organ, with me standing knee-high next to him, while the tears streamed down his face as he began to take in this news and the new future that this child would bring. After the service was over and the news had been announced to the rest of the congregation, Dad found himself being the one to comfort shocked friends who gathered around him. The friendship and support offered by this congregation meant that church was not so much a building but our wider family.
When Mum became pregnant again the medical monitoring kicked in much earlier, a close eye being kept on both baby and mother. When this little one threatened to make a dangerously early entry into the world Mum was prescribed an old-fashioned confinement and spent several months in hospital. It was during this time that doctors suspected the baby had spina bifida and, given the family situation (which was a delicate way of referring to Alastair), pressed Mum to consider further tests.
And, once they had drawn long breaths, Mum and Dad did just that. They chose to consider the future and this child and, once again letting go of their imagined plans, chose to see the future together as a gift. Whoever this baby was it would be a gift to them and, ruling out more tests, they prepared to welcome it and be the family it would need.
I have a scar on my leg where I fell off a swing at a party one August day when I was four. I can still remember that tumble, the gash on my thigh, and the bloody mess on my party dress. I remember wanting my Mum and searching for her through all the grown-ups who seemed to be running to pick me up. But Mum was in a bloody mess all of her own back at the hospital, where my sister was making her way into the world. Rosalind arrived plump, hungry and prepared to shout about it. The anxieties that had hung over her existence all the months she had been growing, unknown in the womb, dissipated: there was no evidence of spina bifida nor any other disability.
And so we were three. Three Jepson children welcomed into the warm embrace of two go-getter parents who had once had plans to live far away and make their small change for good in the world. In the cocoon of the Emmanuel Church family we grew and listened and duly took on the assurances that there was an even bigger love than that of our parents. We added our little voices to the song, making our theological assent that, “Jesus loves us this we know, for the Bible tells us so”.
We listened to the story of Jesus’ baptism in a river and how the skies were torn open and a dove descended upon him while a voice was heard from the heavens declaring that Jesus was God’s beloved and pleasing son. We listened to the story and imagined what it looked like to see the skies ripped apart and wondered whether you could see God’s face as he held the clouds back and boomed his affirmation and love. We looked at the photos of our baptisms and saw the water dripping off our tiny heads, and we listened as we were told that we too are loved by God and called His children. I nodded and wondered why the church roof was not ripped in two where God was supposed to have leaned in to make His baptismal declaration of love and delight over us.
We accepted the news that we were loved ultimately by God, but there was no way to compute how it could be bigger than Mum and Dad’s because there was just love.
Until, each in our own time, we discovered there wasn’t.
There wasn’t just love, there was judgement and, as we walked home from school one day, there was the cruelty of a boy whose face contorted and mouth opened, hurling its disgust upon Alastair, the spit shattering on the pavement as it landed by his feet.
Feeling sick and furious I walked Ali home and recounted what had happened to Mum who listened quietly, all the time making our afternoon snack, as if she’d been preparing for this conversation for a long time. Without any grief or indignation she calmly explained that Alastair would get reactions like this from people; that, despite my incredulity, other people would fear him because he’s different. The only indication for this so far was that he went to a different school from Rosalind and me. And so she patiently explained that his face, his features, those tiny ears and eyes uplifted at the corners would provoke name-calling, taunts and teasing from people who didn’t know how to respond to him in any other way.
I don’t realize yet that the sound of God’s love breaking through the skies and the holy water running over his brow like the tender touch of a father’s hand will be drowned out by the burden of labels like “Down syndrome” and “mongoloid” and “handicapped”.
And so we begin our exile from the Eden of our parents’ unconditional love, ushered out by the sounds of unheavenly judgements. It will be years before we rediscover those words spoken over Jesus at his baptism and come to realize once more that they are for us too, and that they cannot be unsaid by any accusations or embellished by our attempts to be good.