For your Eyes only

Mostly, when I write about Hannah (as distinct from Rett Syndrome), I write about her cheeky smile, her wicked giggle, her sparkling eyes and her mischievous personality which captivate most of those who meet her. The regular reader will recognise these phrases and references, the friend will recognise the little girl I describe.

But this is not the full story. Of course it isn’t. How many 7 year olds do you know who are nothing but giggles and smiles and captivation? Come to that, how many any year olds do you know who are constantly happy? It’s an impossibility, naturally. It is probably also pretty ‘normal’ for children (all of us) to save the tantrums and the unhappy for those we love, those with whom we feel safest. Most parents will tell you that their reported child at school or nursery is a different child to those they see at home. How many of us smile convincingly and engage enthusiastically all day in our workplace, but save the complaints and the weariness for our partners? Natural, I presume.

I struggle, though, to rationalise and to see things as ‘natural’ or ‘normal’ when, by 4.30pm most weekday afternoons, the screaming, shouting and sobbing of my cheeky, captivating daughter has reduced me to tears. It is hard not to feel like a failure of a mother when the child who arrived on the school minibus smiling and giggling is now, in your care, inconsolable.

Harder still when her home-school book tells you she has been happy and engaged all day, yet everything you attempt to engage her in is met with hitting, scratching, louder screaming and angrier tears (hers and yours).

Harder still when you have to admit that you’ve been having a good day. Until now. That the daily trials and challenges of two small boys are simplicity compared with this. That the simple joys of being with your two sons and their precious words become exquisitely painful in these deafening, wordless moments.

Harder still when the late summer sun is still shining and you can’t help but feel that  this should be the start of after-school play-dates, picnics in the park, autumnal walks in wellies, but instead it’s really just about survival.

Harder still when, because son number one has just started school, these hours are more precious than ever. You desperately want to give him the attention and time and enthusiasm he needs, but instead you are consumed with damage limitation. A double-whammy on the failure mother front.

Harder still when you also have to admit to yourself that deep down, you feel that the arrival of that minibus is too often the start of the hardest, sometimes saddest, two hours of your day. How can you feel that way about your daughter coming home? ‘Guilt’ doesn’t even come close.

Harder still when sometimes, too often, in these moments of intense and relentless noise, you struggle to distinguish between the syndrome and the child. I am angry, always, with Rett Syndrome, but sometimes the lines blur and I find myself angry with Hannah. With this child in front of me whom I do not seem able to make happy, whilst almost everyone else can. With this precious, first-born, only daughter, whom I have utterly failed to protect. If I was standing in Hannah’s shoes, I’d be shouting at me too.

Harder still when, because you have never had the privileged joy of hearing her say she loves you, or even likes you, you cannot help but start to feel that maybe she doesn’t.

Maybe she doesn’t.

It’s difficult not to wonder, when all of this does truly seem to be saved for us only. The arrival of almost anyone else, with very few (and well-judged) exceptions, and our smiling, cheeky, sparkling girl is back, making us look like we are a) incompetent, and b) liars. Watch the video, you’ll perhaps at least realise that we are not b), she really does do this. Every day.

Hannah unhappy from Vincent Johnsson on Vimeo.

Or maybe we are liars, in some respect. Because for the most part, we miss out this detail of our reality. We tell the story of the beautiful, happy, smiling little girl and the devastating syndrome which has stolen her words. We share photos and videos of her smile and her giggle, alongside messages of fundraising and hope, and they are ‘liked’. This is not a video to like. I hate it. I hate that it happened, I hate that it happens every day, I hate that I filmed it, I hate that I’m posting it, I hate that you’ll see it. But because it does happen, every day, I think you should see it.

We all (humans) put on a brave face a lot of the time, we all wear different masks and have stories we don’t tell and fight battles and tears which we keep within our own four walls. I post this glimpse through our window because this is Rett Syndrome. It is more than a beautiful, wordless, cheeky girl, it is also, every day, a beautiful, frustrated, angry little girl screaming at frustrated, angry, helpless parents, desperately trying to tell them what it is like to be her.

I love that Hannah shows you her cheeky side, her naughty smile, her infectious giggle. I’m proud that you have seen the best sides of my little girl and that you speak about her as a happy, engaging child. I’m glad that few have seen her other side (and mildly comforted to know that the few who have are people she does, unquestionably, love!) But sometimes, a small, sad, angry part of me wants you to see the rest too. I know you won’t ‘like’ it, but guess what: I don’t like it either.

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