As children, my sister and I were often bemused by the calm manner in which my mum would respond to crimes we considered heinous, yet become upset over trivial misdemeanours. When I was fourteen, I left my flute on the high street. Not in its case, packed away, easily mistaken for something less valuable to steal, but fully assembled, lying neatly on the street, like some Derren Brown mind game for passers-by either studiously to ignore or confidently nick. It got nicked.
When I opened the (now empty) case, I felt sure I’d be in some serious trouble. Having never been in Serious Trouble before (all girls’ grammar school, remember) I could only assume it would be bad. It wasn’t. Clearly, my mum knew that the nausea I’d felt when opening the case and the torment of anticipation was punishment enough.
My sister, intending to turn the bathroom radiator down, inadvertently bled it, causing an escape of water so enthusiastic that by morning, when mum went downstairs, the bathroom floor was on the kitchen floor. A moderate expletive was uttered, the kitchen door shut, plasterer and plumber called, case closed. And yet, clomp through the hall with your mud-caked DMs on, and you’d better be ready to face the prosecution.
Now I’m the mum and, although it’s different, it’s the Big Things I seem able to take in my stride, and the Small Stuff that, for better or worse, gets to me. Last week I sorted through a bag of ‘artwork’ Hannah’s school had sent home: predominantly colourful paper bearing random crayon or paint marks, and a teacher’s scribble saying ‘hand over hand’. That this is the extent of drawing my six year old can manage was not what made me cry; it was the plain piece on which were drawn three exquisitely simple flowers and one heart, and written in childish scrawl, ‘to mum, love from Hannh’. I caught my breath. For a beautiful fleeting moment, reality was suspended and I thought Hannah had drawn and written this for me herself. When reality hit again, it hit hard. Three years after diagnosis, the tiny, trickle-down implications of the Big Things are still catching me out.
Taking Hannah out in her wheelchair for the first time was a Big Thing: a public admission that our daughter is, actually, disabled. But too quickly, it became our norm. A thing not fundamentally accepted, but assimilated into our everyday living without that initial raw pain. Yet when my sons run full throttle to the front door to welcome me home and Hannah, four years older, cannot, this is still raw. Even when the scientific miracle we are fighting for happens, she will be too big, too old, to display this uninhibited enthusiasm for her mum’s homecoming. This detail of life is lost. Does anyone outside, looking in, think of this missing moment? Does anyone continue the thought process from ‘here is a child who cannot talk’ to ‘this little girl will never sing ‘happy birthday’ to her brothers’, or from ‘here is a child who cannot control her arm movements’ to realise that here also is a mum who doesn’t know how it feels to have her little girl just put her arms around her and hug her?
I suspect that most people, understandably, would miss these implications, but then they also miss the daily details which cause our sincerest celebrations. A wee in the potty, an appropriately timed giggle, a night without waking, a choice made independently, a ‘Daddy!’ in context: this is the small stuff we ‘sweat’ so loudly, our neighbour has complained! Honestly, complained: too much ‘whooping’, ‘yayying’ and clapping, less enthusiasm please! I make no apology for such noise, it is the sound of the Small Stuff cementing my family together. Undoubtedly, she also hears the sounds of the Small Stuff trying to knock us down, but since, apparently, ‘what doesn’t kill you makes you stronger’, she will just have to live with that. On reflection though, and after some professional procrastinating, I have created my own saying, which I think might fit the bill of life with Rett (and life in general) rather better: ‘pay attention to the small stuff, it’ll kill you and make you stronger at the same time’. Not quite as catchy, but I think you get the sentiment.