I’ve gone outside for a quick break. The kitchen heat is stifling, but the helping hands are plentiful and the conversation lively. The music has been pumping life into this glad gathering since early evening. It has an energy, a youth and a life of its own. Tonight the local bowls club is a sea of light and sound, sitting on a softly fragrant bed of manicured grass. As I turn back to go into the hall, it sits proud and appears afloat in the dark. I want to bottle the moment – to capture it in a snowdome forever.

The evening has been punctuated with laughter, cheers and stories resulting in the same. The thrum of bass guitar belies a wild, teenage get-together, rather than a family function. The dance floor writhes and wriggles, crowded with young men and women on the edge of adult life, energetic in response to the music. Hope is in their hearts and lights are in their eyes. We’re cocooned in a welcoming place with people who simply accept. There is no benchmark for “cool”. Everyone is dressed to the nines. Tonight, it’s all good.

It’s speech time. The music stops. There is a pregnant pause in the stream of conversation that had been rippling across the crowd. On the stage, by the blinking lights of the DJ console, stands a stout, handsome young man in a black shirt and jeans belted a little too snuggly with a dragon buckle. That’s my boy. He is resplendent in rub-on tats and his light brown hair is slick with sweat after dancing up a storm to Who Let the Dogs Out.

He is waiting for the crowd to quieten, but is in no hurry; let this night go on. Sam’s face is almost split in half by a wide, proud grin. It’s a grin, able to make your heart stand still with the sheer joy shining behind it. No malice. No hidden agenda. No attempt to look anything but himself. The grin, the stance and his attire say loudly, “I’ve arrived. I’m Sam; this is my moment. I’ve come of age!”

Glancing around at dear friends poised with a toast at the ready, I see misty eyes, knowing smiles and hearts full of pride. There is a palpable sense of privilege in attending the coming of age of a very special young man. Sam is not a typical teenager by any stretch of the imagination and, had I a magic wand, I could not dream of changing him, for then the magic he brings into a room would be lost. He has Down syndrome and a host of health difficulties. The list is long, but the end product is perfectly wonderful.

“Had I a magic wand, I could not dream of changing Sam, for then the magic he brings into a room would be lost.” 

The hall is hot, crowded and full of cheer. As we wait for quiet and a microphone, I strain to see the baby he was: small, floppy and listless. It surely can’t be this joyful young man before me? On the stage we stand shoulder to shoulder: my husband, daughter and youngest son, folding in around Sam. I manage to hold back a floodgate of tears and a feast of emotions that gnaw at my throat for expression – which one to choose?

We stand together as a family, a unit, and look out into a sea of friendship as deep as the ocean itself, thick with the life of memories, stories and hopes for a future just as rich as Sam’s past has been. Sam’s friends from Special Olympics stand tall at the front of the crowd. They beam with pride and anticipate words of wisdom from the birthday boy. It’s the stuff a mother’s dreams are made of. This isn’t quite the way I had imagined it would be, but I’m looking through rose-coloured glasses tonight.

Sam’s arrival and diagnosis came as a jolt. He launched us into unknown territory, into friendships we would otherwise never have made or perhaps have chosen. Yet here we are – loved, supported and solid. We feel wealthy in the support of friends who stick with us through tough times and celebrate with us in the calm. Sam reminds us each day of the value of perseverance, gratitude and bravery in facing all a day brings forth. Down syndrome does not define who he is. He makes his own choices, though they may be small.

Sam takes charge and holds the proffered microphone as though he were born to it. He takes a deep breath and begins his 15 minutes of fame. He thanks everyone for coming, says he loves his presents and he loves the dinner and he loves the dancing and he loves the video of John Williamson that his uncle arranged and he loves the music and the DJs. I suspect he may also fancy the pretty girl who has filled his dance card so far this evening. Her eyes are full of stars looking up at Sam. That’s another issue we’ll learn to manage – seems Sam has already beaten us to Adolescent Relationship Management 101 and we need, once again, to fall in behind his lead.

Sam’s new, manly voice, amplified by the speaker system, sounds unfamiliar to us with its confidence and joy. It bounces off the walls and fills the room with a timbre of a small brown bear. Sam’s voice comes from deep down – somewhere between his heart and his soul, I believe.

His particular air in storytelling and conversation is that he always states the obvious and truly revels in sharing the joy of the small things – the details so small and ordinary that the rest of us fail to see them pass us by. Perhaps Sam has the benefit of reacting slowly, so he notices looks, actions and people in his life as they oat past like dust motes. The rest of us become so locked in and focused on what lies ahead, or what needs to be done, that we overlook the joy of the moment.

Tonight, again, Sam grounds us, pulls us up short and reminds us that at the end of the day, the joy of life is in sharing it with those we love and with those who sometimes, unaccountably, love us, stand by us and urge us on; those who know our story and truly see who we are.

His father, Damien, speaks with pride and emotion. He is now the father of two very different adults. Their choices and options are poles apart, but as people they are closer than ever. Damien looks around the room and relates some of his favourite stories, legends made famous in our closest circles by the birthday boy.

There is the story about Sam giving away some of his mother’s jewellery to his high-school sweetheart and of him giving away his MP3 players; both of which have gone to good homes, we hope. When chided for doing so, he responded with, “Mum, you share.” Sam’s generosity of spirit with the belongings of others is legendary.

There is also the story of how Sam knocked a neighbour’s car out of gear and rolled it down the drive. She had to chase it as Sam sat calmly, perched in the driver’s seat as the BMW rolled back and forth across the street, from kerb to kerb.

There is another story about Sam putting his new baby brother into the wheelie bin while his mother sat helplessly on the toilet, aware only of the bin lid closing loudly. The tales continue to fill us with laughter as we remember Sam painting himself with white house paint, and drinking cans of hot beer from the garage at age 13. (Now that was a letter to the teacher I’ll never forget writing.) Another story of becoming locked in the school toilet, forcing the kindly but portly principal to scale the dividing partition … and on it goes. We laugh till we cry.

When it’s my turn to talk, all the preparation I’ve done deserts me. I had wanted to talk about Sam’s arrival into the world and of the bleak, grey picture painted of his future that day by specialists and staff: “Don’t expect much” (I never know what to expect on any given day I assure you); “They are all so placid” (my boy never sat still for a moment and shone with the glow of mischief); “They all love their music” (well, that much is true tonight, though I could do without Black Betty blaring at 2 some mornings at home). If the professionals who saw him on day one could see him now, how differently they might map out a future. How differently they might look at that soft, flat-featured, angelic baby face. Perhaps they might say something like, “You never know. He has the world at his feet.” Well-meaning visitors who made grand statements about God giving “special people special children” might just change that comment to, “He will take you places inside yourself you have never dreamed of and show you a side of yourself you could never have imagined laying claim to, for love evolves you.”

“We feel wealthy in the support of friends who stick with us through tough times and celebrate with us in the calm.”

I had wanted to speak of his achievements. It’s Sam I call when I can’t work the DVD player or Foxtel – for he understands how confusing the world can be and gently goes about helping me, with never a cross word or impatient sigh. It’s Sam I call when I see an amazing spider’s web or rainbow, for he expects wonder but is not overawed by the remarkable or different. It is Sam who notices when I am unwell, sad or excited, for he has a sense of people, an emotional compass that leads him to comfort people or to join in their joy.

Sam has made his mark in the world. He represented Queensland in soccer and swimming for Special Olympics. He completed a hospitality training course. He takes pride in being capable and in doing jobs around the house. He enjoys weightlifting and gym work without being bribed (unlike the rest of the family). Sam can write and read (he once wrote his name in silver spray paint one metre tall across the red brick wall of our house). He is able to use the phone (he once called the ambulance to the house when I had the flu) and makes my day with a cup of coffee in the morning (although he once added barbecue sauce and later told me it was Mexican coffee; I can still taste it).

I had planned to talk about these achievements and of his battles. I wanted to talk about how bravely he manages vision impairment, hearing impairment, intellectual impairment, heart problems and the long shadow of depression. Somehow, though, it doesn’t fit the jubilant mood tonight. Somehow it just doesn’t matter. It’s part of the weave in the tapestry he has become. It’s part of the rich hue of colour in the tapestry of his life.
I’m dumbstruck by the realisation that Sam is a young man beloved, well provided for, well known – there is nothing else of importance. He has his place in the world. He lives each day with no expectation of personal gratification or forward planning, but with an open heart and an open mind. He is eager to embrace whatever comes along. He lives for “now”.

Eventually, all I can offer is a heartfelt two minutes. How proud I am of the young man you have become, Sammy, and the best is yet to be. I want more for you than the crumbs from the table of life that were described when you were born. Grab your life with both hands, enjoy it and continue to
 be glad of each day, Sammy. You are our splash of yellow. You are our hero, our guru and our tour guide. What a ride. Hot tears of pride slide down my face.

Sam’s friend Martin then takes centre stage. He, too, has Down syndrome. He, too, has forgotten to let it rule his options. He sparkles with energy and purity of intention. In the fog of emotion that engulfed our efforts at speechmaking, we have forgotten a time-honoured tradition the crowd relishes most. Martin hoists his glass aloft and shouts to the sky, “Three cheers for Sam. Hip, hip …” It is music to our ears and there isn’t a dry eye in the place.

To say now that the past 19 years have flown by is a gross understatement. It has been the journey of a lifetime so far, through uncharted territory. I’m clutching fast to the seat of my pants and hoping beyond hope for inspiration, energy, wings for my hopes and the resilience of a rubber ball. It’s been a joy, a pleasure, a privilege, an education. It’s been terrifying, humbling and gut-wrenching at the same time. It’s taken its toll, offered rewards and left an indelible mark on my family, my face and my heart. And I wouldn’t change a thing.

Judy Kelly lives in Queensland with her family and works as an inclusion support teacher in a primary school.

This is an extract from Now I See: the Enriching Journey of Raising Children with Down syndrome.

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