If my wife has told me anything – and she’s told me many things – it’s that I can be a grumpy old so-and-so. That I’m a middle-aged guy who occasionally greets the world with an exasperated shrug rather than an open smile hardly makes me unique.
But I wonder if this half-empty outlook on life can be attributed to more than just a receding hairline and an expanding waistline.
Being Elliott’s dad for the past 18 years and coming to terms with just how much of his life is affected by his learning disabilities has given me a different perspective on the world.
After all, it would take a hard soul not to feel a little ground down by sleepless nights, endless paperwork and fathomless worry that accompanies a diagnosis of profound disability.
In the best light
And it’s with all that weight and stress in mind that I decided to set myself a challenge in this piece: to find the unbridled joy in Elliott’s life. And to celebrate it.
I’ve spent so many years filling in forms that require you to describe your life, family and child in the worst possible light that it is a challenge to flip that narrative on its head.
But one beautiful image comes to mind.
A kiss from my boy.
My big boy.
My 18-year-old hulk of a boy who still kisses his daddy like he was a toddler.
Every parent knows the joy of those early years, when your love for your child and their love for you is at its purest and most readily expressed.
Elliott still exists in that moment. He always will.
How many other dads get kisses from their kids once they are adults? Every time he gives me a kiss, I think how lucky I am.
Smiles, dad jokes and dance
And, from thinking of Elliott’s lips, I thought of his smile.
Elliott doesn’t know how to smile.
Or rather he does – he just doesn’t know how to fake a smile. It’s why photos of Elliott often
look a little off; he has no idea
how to pose for the camera. So, when he does smile, it is a genuinely unfettered expression of happiness.
He beams with delight on his own terms which makes every smile a moment to savour.
And then I think of his laugh.
Sure, Elliott’s lack of cognitive ability means that he will never laugh at one of my dad jokes
(my two other children would probably characterise this as a lucky escape) but, boy, can he laugh. We have no clue what he’s laughing at. But that doesn’t make it any less contagious.
Elliott doesn’t know how to smile –or rather how to fake a smile. So, when he does smile, it is a genuinely unfettered expression of happiness
Elliott’s laughs can come from nowhere and spread like waves across a room until everybody is in hysterics with nobody but Elliott having any idea why.
Many people can go for years without making one person laugh, let alone a whole room (again, my children would refer you to my dad jokes). What a gift Elliott’s laughter is.
And, from his laughter, I think of his dancing.
Elliott is not Gene Kelly. Nor Fred Astaire. He’d barely be able to pull off the dance moves of Bez from the Happy Mondays. In fact, he doesn’t dance to music at all.
But he does dance.
Elliott spends his life on tiptoes.
It gives him both a clumsy gait and a graceful elegance. Every step can sometimes seem like a movement to a dance that only he knows.
Great big movements. Huge jumps and giant swings of his arms. Great leaps and claps and sounds of happiness.
Every step of every day for Elliott is marched, bounced and danced to the beat of his own drum. And there is something uniquely joyful about that.
If these treasures seem small – they are. I’m not trying to pretend that the road of having a child with a significant learning disability isn’t a hard one. It is at times almost unbearably tough.
But, amid the clouds, it is important to remember that the silver linings are there. And that they shine in a way that no other parent can know.
