I’m not a big fan of extended metaphors which try to explain the reality of living with a child with profound disability. Inevitably, they come unstuck somewhere along the way and, even if they don’t, they generally describe the writer’s experience of living with their situation as if their experience is exactly the same as everyone else’s in the same boat. Which, of course, is not true. Even more generally, such metaphors tend to dissolve into somewhat fluffy figurative language through which we understand that even though life is challenging and not at all what the author expected, it is nevertheless wonderful and he/she wouldn’t change a thing. Which, I suspect, is also not entirely true.
It may, therefore, seem odd (to those of you who continue reading) that what now follows is an extended metaphor about the reality of living with a child with profound disability, written in such an arrogant voice as to assume that my experience is the same as others and that amongst all the challenges and battles and heartbreaks, there are celebrations too. I apologise. I also partly blame the lady I overheard saying the following to her friend whilst queuing for a latte . . .
‘Parenting doesn’t come with a manual’. I’ve heard it said many times before, I’ve said it myself, I imagine exasperated parents will be saying it for centuries to come. The most important job you’ll ever do comes with pretty much no guidelines. But if becoming a parent is like being chucked into the deep end of the swimming pool without a float, then becoming a parent of a child with complex special needs is like being chucked into the ocean, somewhere resembling the shark infested regions of Gansbaii and the piracy threatened coasts off Somalia, with rocks tied to your feet. It’s frightening and unfamiliar, cold and lonely, and no matter how many swimming lessons you’ve had or how confident your front crawl, you will still feel utterly unprepared.
To start with, you will sink. You will feel like you are drowning, you probably are. Some days, you might even hope you do. But you can’t give in to the waves, because you are not swimming for your own survival, you are fighting the tide for someone else’s sake, so you must keep your head above water. Which is pretty much what you do, once you have managed to shake off the rocks which initially drag you into the darkest depths of the sea. You tread water. You survive.
Of course, eventually you learn to swim in these cold, unchartered expanses. You grow accustomed to the temperature and to the depth, you find things that help you to float and you learn to avoid the things which will make you sink. You learn quickly that it is best not to look too far ahead or too far down – the horizon shifts and the midnight zone is too dark to contemplate, so you focus on the skies directly overhead and the waters within reach. And from there, with your head above water and the sharks and pirates pushed out of mind, you find it is possible to love being in this ocean. You see shades of blue which the chlorine pool will never offer. The depths beneath you may be daunting, but they are also bright with corals and colours with which the tiled, clinical pool surface cannot compete. The storms may be violent and tempestuous, but you value the peace that follows far more than you could ever appreciate the pool’s constant calm.
You still sometimes (often) long for the safety of the pool: the neat, clean edges, the quantifiable depth, the floats and armbands, the ladder escape route. But the hope for safer waters on the horizon, for a passing cruise-ship in possession of tea bags, duvets and normality, for the paradise desert island you barely dare dream of, this hope gives you a strength to just keep swimming that you never knew you possessed.
I could keep this running (swimming?) for pages. The metaphor is easy: a vehicle through which I can distance myself from the daily details of living with Rett, can exchange ‘me’ and ‘us’ with ‘you’ and ‘they’, and turn the raw realities into a picturesque image in which crises are ‘challenges’ and pain creates strength. I could tell you about the unpredictable currents, the ones which lull you into a sense of calm and stability but then turn you upside down and back to front without warning, leaving you gasping for air and relieved just to be able to tread water once more. I could tell you about the tiny, transparent, deadly jellyfish whom you can never quite put out of your mind, even when the underwater world beneath you is at its most beautiful. I could tell you about the glimpses of land on the horizon, land towards which you swim as fast and furiously as you can, never quite managing to get within grasping distance yet certain that you are all the while getting that much closer to the place where you know your paradise island will one day appear.
As I said, I could go on, but I won’t. Because, as I also said, it’s flawed. I know it comes unstuck, I know it’s a somewhat cliche version of an old idea, I know it’s really just a convenient way for me to avoid writing about those daily details and raw realities of the last few months. You see, it has been a testing time, more so than usual, and stress and exhaustion levels have reached all-time highs. But we’re still standing (swimming?!) and in some ways we are now in better (friendlier) waters than we were before. It’s a blog for another day, when I am brave enough to choose between the positive feel-good perspective and the brutal truth angle, but in short, we finally moved house. We love our new little patch in the ocean, we are fortunate to have it, things (some things) are better. But of course the cruise ship has not rescued us, the paradise island has not magically materialised, the new patch is still in the middle of the ocean, not the pool. Obviously, I knew it would be, a new house is not a cure for Rett Syndrome, but there is always an element of crashing back down to earth when something you have hoped and waited for for so long, turns out not to make everything okay. But, as I said, that’s a blog for another day.
For today, I can’t help pondering this clichéd, arrogant metaphor I’ve created and realise that perhaps its biggest flaw is this: I was stubborn and strong-willed as a child (astonishing, I know) and refused to learn new skills in the conventional manners, preferring to take myself off in secret or with a trusted adult to learn and practise said skill until I was good enough at it to show the world. Which was why, when I was eight years old, my Grandma taught me how to swim. In the sea. I have preferred to swim in the ocean ever since.