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Living with Rett Syndrome: Playing Mary – Part 2

Beth Johnsson

photo 71 300x225 Living with Rett Syndrome: Playing Mary   Part 2Well, I was right. Mostly right. As predicted, today was messy. Hannah played Mary, ‘Purple’ class played green aliens, 80 other immensely special (in the ‘unique’ and ‘brilliant’ sense of the word) children played stars, angels, donkeys, sheep, kings and shepherds, and I, you’ve guessed it, wept. As predicted, emotions ran high and contradictorily, thoughts ran between two polar extremes and the camera battery ran out.

It didn’t help that 24 hours earlier we had been to watch the Christmas show at the ‘new’ school, the school which is now undeniably the most appropriate place for Hannah to be. Except that it is entirely deniable, particularly if you look at Hannah through the eyes of a mum who wants desperately to believe that the last three years haven’t changed her little girl; a mum who is searching for reasons to be able to say ‘she’s staying here’; a mum who doesn’t want to admit that the little girl who absolutely did not fit the cohort of the ‘new’ school three years ago, fits it now.

I said I was only ‘mostly’ right. What I was wrong about, some might think mercifully, was the suffering of baby Jesus. Not so much as a poke in the eye. I was disappointed, in all honesty, not only because I’d secretly started to look forward to the possibility of a crowd-surfing son of God, but mostly because Hannah’s lack of interest in man-handling the things within her reach is testament to the extent of her loss of skills. A loss we don’t always notice (much as parents don’t notice their children are growing until an aunt who hasn’t seen them for a year exclaims ‘haven’t you grown!’) until she is standing (sitting, actually) amongst her peers. Today, we didn’t need an old aunt to point it out – the gap was unmistakable. It is an unforgiving freeze-frame which hurts, relentlessly.

Three years ago, watching school shows for the first time, the emotions ran high and complexly for different reasons: relief that we had won the fight to get her there, hope that it was the place where she would be happy and thrive, disbelief and sorrow (only 12 months after diagnosis) that our little girl belonged in this special needs school. Today, only 36 months later, I truly wish she still did. It’s not a wish I ever thought I’d make, but then this life is full of wishes I never imagined I’d need to make.

I wrote in my last blog that Hannah as Mary would, to me, look perfect. If perfection is what you see when you love someone, exactly the way they are, unconditionally and completely, then I was right, she looked perfect. But it also looked painfully flawed. The play was brilliant, life-affirming, hilarious. Hannah was beautiful. The looks she exchanged with her teachers were adoring. Yet she was also plagued by around eight petit mals during the 30 minute show, remained seated and rocked fairly violently back and forth throughout, interspersed the beautiful, mischievous smiles with periods of absence and disengagement, and was the only silent child. It was the first time, at school, that I’ve felt she looked different.

Which should make things easier, right? Wrong. It makes the ‘decision’ part simpler, yes: the scene in front of us brought reality into sharper focus, making it clear that the move is necessary, but an easier decision is not compensation for the heartache of this reality. Because it’s not supposed to work like this. Humans are supposed to progress, no matter what our starting point, we’re supposed to move forward. Children are supposed to be able to grow up. I’m sorry to be such a petulant teenager, but on days like today it’s hard to not want to stamp my feet and scream ‘it’s not fair.’

I know all the rational arguments and practical positives, by the way. I know that Hannah may well thrive in an environment where she is amongst the most, rather than least, able; I know that children adapt quickly and that we, the parents, are likely to find the whole thing more traumatic than she does; I know that it is better for Hannah to be somewhere which is equipped to help her learn rather than somewhere which ‘simply’ excels at making her smile; I know that Hannah enchants those she meets and that she will always be loved and valued wherever she goes. I know. But my brain and my heart are not always on speaking terms and right now, communication lines are down.

But I’m lucky, mine is a temporary connection glitch which I know will be re-established with time and about which I CAN cry, stamp my feet and shout ‘it’s not fair’. Hannah’s isn’t, it won’t, and she can’t. Which is why tomorrow, of course, I will overcome my glitch and start tidying up the mess. Not everything will go back in the exact place it came from, it might take us a while to get used to the new system and to remember where everything goes, but I’m sure we’ll get used to it and before too long, hopefully, we’ll look back and wonder why we ever let it get so messy in the first place.

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