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Living with Rett Syndrome: An unconventional day out

Beth Johnsson

rett 225x300 Living with Rett Syndrome: An unconventional day outToday I was given a rare gift: a day alone with my little girl. Just her and me. A girls’ day out. She understands immediately when the attention is undivided and starts to giggle the moment I lift her into the car, clearly excited at the absence of small demanding boys on the back seat!

We drive with the windows down and the music too loud, our little act of rebellion, our Thelma and Louise. She shouts loudly at the songs she wants me to skip (the ones she hasn’t heard every time she got in the car for the last 18 months) and smiles broadly at those with the strongest bass lines and catchiest refrains. Laughing unmercifully at my appalling vocals, she makes sudden lunges for the gear stick just to check I’m paying attention and finds the resulting stall of the car hilarious. It’s hard not to laugh too.

In the swimming pool, she is in her element: she throws herself around, liberated by the water, and scans the sides of the pool constantly for other children jumping in – the wilder and more dangerous the better! The water puts her on more of an equal footing with the other kids (a fluid level playing field, if you will) and she revels in it.

She edges closer to the sides when a young male lifeguard appears and does her best to make eye contact before awarding him her best smile (she has done this since she was two, I still can’t decide whether to be embarrassed or impressed!) When we both start to resemble red-eyed prunes, we go in search of the holy grail: tea and a muffin. I push her wheelchair deliberately over the bumpiest parts of the pavement, warning her frequently to hold tight because ‘mummy’s driving’, at which she giggles conspiratorially every time.

She turns her head every few steps, smiling, as if to check it’s still me at the wheel, and congratulates herself with a full throated shout when she hits the button on the pedestrian crossing first time. Mid-way through a muffin, the post-swim weariness wins. She falls asleep, managing a few more mouthfuls even with her eyes closed, and I watch her sleeping with her head on my folded coat as her pillow. I sip tea and take a moment to scribble some memories of my day with my daughter, but mostly I just watch her breathing.

When she wakes, we go ’shopping’; I take her into a clothes shop where she immediately amuses herself hugely by pulling clothes off hangers (the sales assistants are mercifully tolerant) and shaking hands with a mannequin (young and male, I note). His hand comes off in hers and she looks quickly to check my reaction, only collapsing into giggles once I have set the precedent.

Feeling brave and buoyant, I squeeze us both into a changing cubicle: a manoeuvre which, since it involves her mother working hard and looking like a fool, Hannah enjoys immensely. (I should mention here that ever since we bought our first car and Hannah became its passenger, she has derived huge entertainment from every pressurised parallel park I have had to undertake. If you are at all familiar with residents parking in London suburbs, you will understand that Hannah has ample occasions to laugh!) Our changing room five-point turn is amusing, although not quite as entertaining as the state of half-dress she then finds me in. Hannah and exposed skin is, for want of a less obvious expression, like red rag to a bull. We do the ‘please don’t pinch me even if it does give you sensory feedback’ dance around the wooden box, wondering all the while what the sales assistants and/or their customers might imagine is going on in here! The dance and resulting giggles are worth far more than the clothes, so we leave happily empty-handed, but not before Hannah wins over the sales assistant (need you ask?) with a two-dimpled grin and a final hopeful tug at the mannequin’s other hand. She may not be able to talk but she always manages to have the last word.

Of course, this is not the whole story. This is the edited version, the version which omits the rather unpleasant (but not unusual) ‘number 2’ incident in the shower after swimming, the lunging not only for the gear stick but also for me, the frenzied digging of nails into my skin which draws blood in the pool, the near-miss grab of another child’s hair as we exit the café, the violent shaking when confronted with an almost imperceptible change in pavement height, the screaming episode and tears over the transition from car to home, or the innumerable, powerful blows to my hand as I simply try to feed her dinner.

I could write about all of those too, the daily occurrences which no longer seem extraordinary in our world. But the full story doesn’t make the edited version any less good; if anything, it makes it better. Our girls’ day was unconventional: it wasn’t a spa or a makeover or a shopping bonanza on Oxford Street. It wasn’t without its challenges. But the good moments were good. The smiles were real. The mum and her little girl were happy.

When the goalposts are moved and those larger achievements you thought you would share with your child (university, travel, career, family) are taken away, the smaller things come into sharper focus. I used to dream of taking my daughter to The Globe, of reading her Little Women, of arguing with her about the merits of Simon and Garfunkel as opposed to ‘that noise’ she listens to, of helping her choose her first-date outfit and convincing her Dad she can leave the house in it. But dreams evolve, and whilst I will not stop fighting for the chance to argue with my teenage daughter, I know now that days like today are the stuff of dreams too.

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  • Karen Cundy

    A beautiful portrait of a girl full of spirit and charm and natural verve shining out and fighting out through the obstacles of Rett by a mother on her wavelength.


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