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Rett Syndrome and me: Raising the game

Beth Johnsson

photo 11 199x300 Rett Syndrome and me: Raising the gameAs I stand and watch two grown men tighten straps, fasten belts and anchor harnesses to secure my daughter’s wheelchair into the adapted minibus now required to transport her to school, my stomach turns. It is not an unfamiliar sensation. It’s the same sensation I had three years ago when she received her first pair of specialist boots, two-and-a-half years ago when we first needed a wheelchair,  two years ago when we realised we would have to move her bedroom downstairs and install a wet room. Or one and a half years ago when she had her first EEG, one year ago when scans and blood tests became frequent, three months ago when the school search had to begin again, two months ago when an MRI came onto the agenda, four weeks ago when we realised a WAV would be necessary, last Saturday when seizure medication started for the first time. And today, when the little girl who could once climb into a car seat, is reliant on two men, me, an array of buckles and a plethora of health and safety guidelines before she’s even left the drive.

Because, you see, Rett Syndrome keeps on moving the goalposts. Actually, that’s not right. The goalpost stays exactly the same and in precisely the same spot. It is the opposing teams you must battle against, whilst always keeping the goalposts in sight, which are constantly changing.

You start out punching roughly your own weight, the opposing team have as many strengths and weaknesses as you and, overall, you’re a pretty fair match. In the same league, at least. But steadily, sometimes without you even noticing, substitutions are made. Each new player is a little better than the last and changes the game, making it that much harder to keep up. But you do, every time they lift their game, you lift yours too. You adjust, make your own switches and substitutions, give yourself a damn good team talk and get on with it.

Somehow, you manage to play on and sometimes, you even manage to level out the playing field again. But then they do it again. And again, until you find yourself facing a team in the league far above you: stronger, more cunning, faster, better able to weaken your defences and demoralise your team spirit. Remarkably, though, you keep up. You defend against moves and manoeuvres you never thought you could cope with, far less outwit, and retaliate with strength and determination you didn’t know you possessed. Yet all the while, your stomach is turning.

I know that we will raise our game to cope with today’s substitution. We will get used to the rigmarole of the buckling in and waving our daughter off in a wheelchair inside a minibus. In fact, we will do more than this, we will come to recognise the advantages of the new system, absorb it into our ‘normality’ and wonder why it ever seemed so daunting. We’ll adjust, just as we have adjusted to every other game changer so far. The first time we ever put Hannah in her wheelchair, my stomach turned and I had to fight tears every time I looked at her. We made our emotional substitutions and now, I barely give it a second thought. It’s her buggy, that’s all. The minibus will become her transport, that’s all.

Until the game changes again. And the problem (as if there was only one) is that a regressive condition means you know those changes are coming. Just as your new formation has settled down, got used to their positions, levelled the field, the next Premier League player will be brought off the bench and throw you off balance again.

I know that there are families who are up against teams I cannot even imagine facing, families who have had to raise their game in a way I can only hope we never have to. But we all know those teams are out there, not in our half of the draw just yet, but out there. So the best we can do, I think, is enjoy the game we’re playing now, take pride and joy in our team members, celebrate the manoeuvres which outwit the opposition, get up again quickly when their manoeuvres knock us down, keep our eyes on the goalposts, and, even when our stomachs are turning, play on.

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  • Karen Cundy

    Fantastic article, kicks the ball right in your stomach and gives you a welcome squeeze of an orange segment at the same time. Another actually very positive blog of a very difficult situation, how we all respond to challenges defines our day to day life although it is not always easy to face things positively it is something to strive towards


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