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Living with Rett Syndrome: How far does a smile alone actually go in this world?

Beth Johnsson

IMG 0198 300x225 Living with Rett Syndrome: How far does a smile alone actually go in this world?On the last day of term Hannah came home with a certificate: ‘awarded to Hannah Johnsson, for always having a lovely smile and being so happy. Hannah gets on really well with all her friends and is a joy to have in the class.’

Full of pride, I took a photo and shared it, knowing that those who also know and love Hannah’s infectious smile would understand my happiness at such a report. I celebrated the moment and the knowledge that the school we fought for sees and celebrates the Hannah that I see.

But then the comments started coming in, and with them, some troubling thoughts. Not because they made me reconsider my pride and celebration of Hannah’s award, not for a second, but because the comments themselves seemed hard to reconcile with reality.

Before I go on, I should say the following: 1) I know that for anyone not living in a similar situation, saying the ‘right thing’ is almost impossible; 2) As the regular reader knows, my tendency to over-analyse may lead to undue sensitivity;  3) Most responses were perfect, simple recognitions of Hannah’s smile and brilliance. And then comes the ‘but’.

‘Believe me, a smile goes a long way.’ True enough, Hannah’s smile has brought her a long way so far and has made the journey undeniably brighter. Her smile, or absence thereof, is her key communication tool; a smile which makes those who meet her love her, and those who love her understand her better. But let’s be honest: how far does a smile alone actually go in this world? I’d hazard a guess that the articulate yet crooked-smiled candidate gets the job over the beatific silent type any day! Call me picky, but so far I haven’t seen Lord Sugar choose one single ‘Apprentice’ on the basis of their beam!

Which is not to say that these are the ambitions I have for my daughter. Far from it.  I will be as proud of my little girl and love her just as much whether she never speaks another word or becomes the General Secretary of the UN, continues to eat pencils or writes her way to becoming the next J.K. Rowling, seduces all she meets with that silent smile or becomes a stand-up comedienne with the demeanour of Jack Dee! But what about what Hannah wants? Does a smile take her as far as she wants to go? Would the comment’s logic hold up if the author’s own children did not possess both beautiful smiles and the abilities to speak, run, read, write and grow up?

Which brings me to another troubling response: ‘what more can any parent ask for?’ I understand and agree with the fundamental sentiment. As a mother, my ultimate wish for my child is that she is happy and loved (genuinely, without any ‘and it would be great if she became a successful lawyer too’ subtext!)

But again, let’s be honest: Hannah’s is an enchanting, communicative, mischievous, personality-filled smile, but it is not an ‘always’ smile. It is a smile intermingled with moments of deep, intense frustration which cannot be expressed, with a ‘sad face’ which makes me want to cradle her like a newborn, with hitting and biting and pinching in enraged desperation, with sleepless, maniacal nights which scream of anything but contentment. I ask for more because these moments are Hannah telling me that she asks for more, that she knows her smile is not enough, that she has a whole human more than a smile to offer this world and that she wants desperately to be allowed the chance to give it.

Since Hannah’s diagnosis I have thought a lot about the possibilities of a cure and what it would mean. I have read articles by parents of children with other conditions which reject a hypothetical cure on the basis that the syndrome is part of the child they love. I struggle with this concept. I don’t know for sure who Hannah would be without Rett, but if her smile, her giggle, her personality shine through like they do despite the storm clouds in their way, they must be pretty damn bright. Hannah is who she is in spite of Rett Syndrome, not because of it, and her smile shouldn’t be mutually exclusive to all which is trapped and hidden. So yes, a smile goes a long way and a happy, loved child is pretty high on a parents’ wish list; but believe me, I do, unashamedly, ask for more: I ask to one day hear Hannah’s wish-list and to see the smile she gives when she is free.

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