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Life with Rett Syndrome: Trying not to sweat the small stuff

Beth Johnsson

rett1 225x300 Life with Rett Syndrome: Trying not to sweat the small stuffAs 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 14, I left my flute on the high street. Not in its case, packed away and easily mistaken for something less valuable to steal, you understand, 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 got home and opened the (now empty) case, I felt sure I was in some serious trouble. Having never been in serious trouble before (I went to an 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 anticipating her response was punishment enough.

The same story when my sister, intending to turn the bathroom radiator down, inadvertently bled it, causing an escape of water so copious that by morning, when mum went downstairs, the bathroom floor was sitting on the kitchen floor. A moderate expletive was uttered, the kitchen door quickly closed, 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 (if Hannah had the fine motor skills required to twist a radiator knob I would be thrilled!) it’s the big things I seem able to take in my stride, and the small stuff that, for better and worse, gets me.

Last week I was sorting through a bag of ‘artwork’ Hannah’s school had sent home: colourful sheets of paper bearing a few random crayon or paint marks, and a teacher’s note in the corner saying ‘hand over hand’. The fact that this is the extent of drawing my six-year-old can manage was not what made me cry; it was the plain piece of paper on which were drawn three exquisitely child-like flowers, a misshapen heart, and in a childish scrawl, the words ‘to mum, love from Hannh’. I caught my breath. For a second, a beautiful fleeting moment, reality was suspended and I thought Hannah had actually made this for me. When reality hit home again, it hit hard. I cried and cried, as if finding out that my daughter can’t write me a card or draw me a picture was new news. 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 very quickly, perhaps sadly, quickly, it became our norm. I didn’t have to fight the tears anymore. These days, I push Hannah around without thinking about it, no longer feeling that initial raw pain with every step. The sharp edges of the big thing have become softer, fuzzier, assimilated into our normality.

But when my sons run full throttle to the front door to welcome me home and Hannah is left sitting on the sofa, an onlooker, this is still raw. When the boys throw their arms unreservedly around me, yet Hannah’s lack of arm and hand control denies my daughter and I sharing the same, simple hug, this makes me ache. Even if the scientific miracle we are fighting for does happen, she will be too big, too old, to display this uninhibited enthusiasm for her mum’s homecoming. A small moment of joy which I can never reclaim.

When you have to accept that so many small details of life are lost, it is fortunate that the big thing simultaneously teaches you to find joy in the tiniest details, the small stuff, you are allowed to keep. These small moments, which may seem trivial or inevitable to others, become the cause for the sincerest of celebrations: an aptly timed giggle, an independent walk between two rooms, a choice of photos made purposefully, a clap of hands in the right place in a nursery rhyme, a ‘Daddy!’ in context. The loss of one sense is said to sharpen those senses remaining; so too, the loss of some of life’s reasons for joy sharpens your appreciation of those that stay.

Our next door neighbor recently complained about the level of enthusiastic ‘whooping’, ‘yayying’ and clapping coming from our house. I make no apology for such noise, it is the sound of our celebrations of these daily details, the melody of the small stuff keeping our family alive. It is true that she can probably also sometimes hear the sounds of the small stuff trying to drag us down (Hannah’s perpetual shouting is not easy to ignore and can take me to breaking point if I am sufficiently sleep deprived), but for that I can really only recommend either a good insulator or a good estate agent!

I know the saying goes ‘don’t sweat the small stuff’ and I get the sentiment, of course, but it seems to me that actually, it’s the small stuff that gets you, that can bring you down and lift you up, destroy you and give you hope, sometimes even simultaneously. The card Hannah didn’t write me now stands next to my bed doing just that every time I look at it: a small thing, destroying me just a little but giving me invaluable hope at exactly the same time.

  • http://www.facebook.com/karen.cundy.12 Karen Cundy

    Another great blog and insight into life lessons we can all learn from. Thank you, keep writing x

  • PaulOnBooks

    I know how the small victories can be so rewarding and stimulating but do please consider your neighbour – do you know what health problems they have? What the disturbance might be doing to them? Have you tried talking to them and looking for a solution?


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