Tuesday, 31 December 2013

Of storms, ships, hopes and milestones

2013 has been the first year in a line of many that I can remember that hasn't centred around either a new house or a new baby, or planning for one or both of the above. After a constant flow of change and upheaval, this time last year we were looking forward to beginning our first full year in our new lives, and hoping that after the turmoil of 2012, the coming year would bring with it tranquility and contentment. On New Year's Day 2013, I waded out of the sea carrying the hope and vigour only a refreshing winter sea swim on a crisp morning can bring.

Looking back at the months now passed I see I should have paid greater attention to what the sea was telling me that morning. Intuition should have told me the raging walls of water, relentless and unforgiving in their pace, were playing out a revealing metaphor for the year ahead. Not unsurmountable, but unremitting.

Today someone asked me to sum up our year in three words and I realised that I couldn't. After a moment, what became clear is that, actually, I didn't want to. Not because it has been bad, necessarily, there have been some very happy times, but because it has been relentless. Every time we have needed, or wanted, to lift a foot from the gas awhile, we've had to put it right back to the floor and push harder. Downtime has been squeezed into snatched moments, never fully able to relax, for the consciousness of work undone and tasks in waiting has never lifted.

This year, the enormity of life with an Orange in tow has pressed down on us unyieldingly, with too little time free to balance out the magnitude of the job in hand with frivolity and fun.

Really, we're still novices in this new life, feeling our way around in the dark. There is no guidebook for this trip. No-one can tell us what the future holds for Orange, and yet there are challenges presenting themselves in the here and now that we've had to find ways to negotiate.

Basic things, like getting him in and out of the house safely now he's a fully grown boy who can't walk, getting him a pre-school (and eventually school) education when he can't talk, feed himself or use the loo, keeping him safe in bed when he's grown too big for a cot but has no sense of danger or ability to haul himself back up under the duvet if he falls out, keeping his joints from failing when he cannot weight bear, keeping him entertained and stimulated when he cannot access or interpret the world in the way a typical two year old can.

Getting all these things right for him requires hours, weeks, months, spent researching, reading, visiting, asking questions, filling in form after form, chasing, calling, emailing, and negotiating bureaucracy. Of course, I am eternally grateful that we live in a country where support and help is available but just figuring out what you need and jumping the hurdles to get to it is, or has been in 2013, a full-time job.

And at the end of 2013, I realise that this full-time job, along with my actual full-time job, plus the other full-time job of managing Orange's therapies, oh yes and the other one I stumble along in trying to maintain a home, raise children and be a wife, friend, family member and active part of the community, has pushed me right up to my limit. Beyond it, probably.

With financial worries, a punishing work schedule for both of us and a turbulent year of ill-health and shifting relationship landscapes in our extended families, 2013 has been a pretty eventful non-event of a year. Stormy. Not in a dramatic thunder and lightning sort of a way, but a persistent gale, with the odd hurricane force gust thrown in for good measure.

But there have been glimmers of sunshine through the storm...

Friendships renewed. And that I am so thankful for.

Long, lazy, hazy days spent sun-soaking on the sandy shoreline.

The unbelievable and overwhelming kindness of strangers.

A blossoming sibling relationship with ferocious loyalty and the tenderest of love.

Orange has done things we thought he might never do. He sits up. He inch-worms across the floor. He laughs at the same scene in Peppa Pig each time when Daddy Pig sets the BBQ on fire and Miss Rabbit comes to the rescue. He holds his arms up for a cuddle and shouts with the disagreeability only a hungry toddler can. He giggles with excitement when he realises he's on the road to swimming class and raises merry hell when Katy Perry comes on the car radio. He surprises us daily.

Orange, with all his Big Scary Unknowns and constant surprises continues to shape our lives, focus our hopes and influence our priorities for the years ahead. With less than three hours left in this weary year, 2014 stretches out in front of us fresh, clean, unsullied and full of opportunity. I dare not anticipate exactly what the new year will bring but I am hopeful. Gradually, piece by piece, our lives are starting to form into something a little less chaotic. I can see restored order beckoning on the horizon.

Tomorrow, I'm hoping for calmer seas. But what Orange, and this year closing behind us, have taught me is not to be afraid of the storm, just to learn how to steer the ship, and to be eternally grateful for small suns on grey days.

A couple of weeks back, I came across this riddle, inscribed on the wall at Eden. Simple words, hidden in the undergrowth. It was one of those little moments that 2013 taught me to cherish, when coming across something small but wonderful. This seems like a good time to share it.

Wishing you all health, hope and happiness for 2014 xx

"We will open the book. It's pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day." 

Edith Lovejoy Pierce

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