Wake up

When someone you love dies, you realise there is an end. Such a basic concept, part of life, but one we fail to consider until grief blows its chilling wind. Death of a loved one changes everything. It bleeds into every nook and cranny, stains memories and silences dreams.
Yet life rolls on, without hesitation, relentless and brutal and somehow still amazing. The shock can catch you months, no years, into your mourning. When you think you’ve got it licked, think you can breathe again and look for the light, feeling its warmth, a piercing blade will deeply slice, cutting you anew.
What holds you together are the people you love who still breathe. To know that they struggle and feel as you do, hold all your memories in their heads too. To be able to reach out and touch them, smell them, is just about enough to stop you from sinking. But the future will have changed, it’s different now. Because knowing there is an end, brings an understanding of joy along with a painful curse. You want to hold on tight, gather those you love and forbid them to move yet urge them to greedily consume fun and love until they burst.
The question of how long, is in all our mortal thoughts. Not to know is best; I’ve seen what the flip side can do. So think big, think great, think long - why not? But I know now to make haste, not to waste another moment. To look for the little bits too, the ones you’ll miss because your eye is on the giant plan, these are the bits you’ll cherish the most.
Who are we without the ones we love? They are the most important thing. Not the size of the house or the car, not the wink of the diamond or sheen of the pearl. Without our loved ones we have nothing, no witnesses to our lives. When you strip it all away the only important certainty is our relationships, it’s what makes us human.
Having a child with Down’s syndrome can be a bit like that. The slow realisation that you can never change what you were not expecting, however much you’d like to. That life can be brutal and cruel as well as magnificent and joyful. Usually it’s a mixture of both. It’s not that you don’t want the person with DS, it’s just a shock when you first realise and you’d prefer they had been given all the benefits everyone else enjoys.
Such benefits can be so different for each and every one of us and some just a jumble of skills we never even realised we should cherish. The gold star ones are what make us proud. And we cheerfully take them for granted too. We never consider the merits of a strong spine or a quick tongue. We never think twice about tearing open a bag of rice or slicing the bread with a razor sharp knife. We can all do that right? Not my son.
But the same is true for individuals with DS; they have skills, only they have fewer to choose from. They struggle, although I question whether we really notice how much. They are massive achievers, only we can’t see it. We judge them by our own goals and aspirations. They have goals and aspirations too, but they are forced to tailor their dreams, make them bespoke. Imagine how that must feel.
The shock never goes away, for me anyway. That’s not to say I’m in denial, I’m most certainly not. But I wish..... I wish my beautiful son could be who he wants to be. A father, a Director of films, an independent young man with a dog and a mortgage. Flip the coin, what’s so bad? – Who wants a mortgage anyway? Maybe nobody – but to have the choice, that’s the clincher. I’d like my son to have choices. We give him as many as we can, but I’m not talking about the choice of tomato ketchup or mayonnaise, or mashed potatoes or chips. I’m talking about the choice of whether to drive or walk, to stay in and read or pop out to a wine bar and meet friends. I call them premium choices. We’ll make sure he gets as near as he can to those premium choices, but my son will always know wherever we end up, it’ll always be a smidgen short of premium.
So we return to the most important thing, the ones we love. Plus those little bits in the nooks and crannies, the ones you’ll miss if you don’t watch out. It’s rather simple really, it irks me that we all require such extravagant wake-up calls. But once they’ve made themselves clear, it’s hard to ignore them. Just focus on the most important part of life, relationships. Ha! What’s to go wrong?