Tuesday 27 September 2016
There have been times when the sun disappeared, when all we could see were black clouds, and when we hadn’t known if we’d see the day again.
There have been times when Little S could not be comforted or cuddled or sometimes even touched, and when there was nothing we could do to help her other than pray and try to stay strong.
In those times, she is in the hands of some amazing medical professionals – it is their skill and judgement, her stubbornness and fight, and the Divine decree that decides her fate.
And we just watch … and wait … and cry … and, if we have the strength, talk.
Talking is so important, and yet it can be so difficult. Because once you verbalize a thought you make it real.
Sometimes it’s the first step in helping you deal with it – it’s no longer a demon preying on you – you’ve given it form and shape and boundaries – and you’ve remembered that you’re not alone – and that is a source of such strength.
But it always feels like making it real is such a horrendous risk to take – maybe if I don’t talk about it, it will go away? What if I’m not strong enough to bear the words? Making it real might break me.
Sometimes it helps to be alone.
There is a room in Great Ormond Street Hospital that offers a place to do just that – it’s called The Chapel.
It’s quite a small room – a bit like a church, with biblical inscriptions on the walls and a statue of Jesus at the front, but unlike any church I’ve been in, it’s stuffed full of teddy bears!
And it’s a quiet room – one that encourages reflection and stillness – a place to gather oneself.
In the run up to Rosh Hashanah, the Jewish New Year, we are supposed to step back and think about our priorities in the world – what is it that is truly important and worthwhile to us – where should we be putting our energy over the coming year.
It’s a time to remember to seize the opportunities inherent in every day – to remember that most of our problems are not really problems, they are just noise, a distraction from focussing on the real meaning in our lives: our children, celebrating joyous occasions together, drinking in the wonder of the universe around us, making the world a better place.
It’s something that I often do not remember, even when I’m pushing Little S to synagogue in a wheelchair – we might be a bit late, she might have been a bit naughty, it might be raining – all too easy to forget.
But Dr D is giving us a big wake-up call – we received a letter from GOSH to say that Little S’s next major op is being scheduled and will probably be sometime in the next few months. When you open a letter like that it halts you in your tracks – the world carries on around you as you stare at the black typed words on the page or screen, feeling like the black cloud is rushing towards you out of the corner of your eye.
And Dr D is not the only one giving us a wake-up call – as with four years ago, we’ve been agog watching the Paralympians – champions over adversity, destroyers of limitation, superhumans – racing down the track or through the water with what we would normally think of as a disability but what they’ve turned into an opportunity - inspirational.
Little S knows that she has a ‘magic heart’. She knows that she needs a wheelchair to get around any distances more than about fifty yards or so. She doesn’t call this a disability. It’s just how life is.
The things that she does complain about are the same things as any 5 years might: shouting that she wants to watch one more episode of Spongebob Squarepants, screaming that she doesn’t want to go into to her new Year 1 class at school, refusing to brush her teeth.
Strangely, whilst I have to keep reminding myself to not complain about the little things, I’m quite happy to be reminded that Little S has the strength to kick up a fuss about something so trivial!
So the black cloud is looming but for the moment I have an awful lot of simcha and joy to look forward to: it’s the Jewish New Year, it’s Little S’s older brother’s Bar Mitzvah, it’s a time of many opportunities to celebrate with family and friends, all within the next month.
Black clouds are going to have to wait.
Shana Tova U’mtuka (have a happy and sweet new year)
