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Living with Rett Syndrome: Trying to face some inevitable truths

Beth Johnsson

Rett 225x300 Living with Rett Syndrome: Trying to face some inevitable truths I like to think that I am generally a realistic, feet-on-the-ground, faces-the truth kind of a person. Since the initial shock of diagnosis wore off, I have imagined that I am facing the reality of my daughter’s condition in an informed and educated manner. But actually, I’m not. I’m in denial. And never has that been clearer to me than this evening.

Two-and-a-half years ago I started the search for Hannah’s school. I looked at 10, and left all except one in tears. Not because they weren’t good schools, they just weren’t right for Hannah. The one that was, being outside our borough and therefore more expensive, was inevitably not the one the local authority chose. But I have learned how to fight for the things I know are right for my daughter, and it’s a fight I have felt glad to have won every school morning since.

Hannah is happy there. I know this because she beams when I put ’school’ on her visual timetable in the morning, because she giggles when I say the names of her teachers and classmates, because apparently she rubs noses with the headmistress every morning, because watching the video of her school Christmas play halts a ‘meltdown’, because in every photo they ever send home, Hannah is smiling.

We weighed up that happiness against the things other schools could provide. Daily access to a multi-sensory room, hydrotherapy on-site, in-house SLT, ready-made hoists, mechanical changing tables; these were pitted against our certainty that Hannah would thrive in an environment where her peers were running, climbing, singing and chatting, even if she couldn’t do those things herself. These were the things that would keep Hannah here, sparkling, living, Hannah. And we were right, they have.

She has not only been allowed to be herself, she has been cherished for it. She has come home with awards for her smile, for her interaction, for her cheekiness. Her place within such a remarkable school has made me proud and happy in a way which, when I first started coming to terms with the kind of environment in which my daughter would be educated, I never expected. Tonight, going for a scheduled parents’ evening, I expected to leave feeling the same. Instead, I sat for 15 minutes in the car park sobbing. Her time as part of this remarkable school, I know, is up.

When she started, she was somewhere in the middle of the cohort. The sixth form provision, I argued, could enable her to stay to 19, avoiding the stress of upheaval and transition. Today she is at the bottom of the spectrum. And not accompanied by a group of other kids, she’s on her own. To be clear, this wasn’t the melodramatic result of my instinctive realisation that the school simply can’t provide for Hannah’s needs anymore. It was the result of an honest, emotional and practical conversation with her teachers and heads.

I know that if I asked, they would keep going, nurturing her and making sure she is happy. But none of us can deny the facts: Hannah is 30 kilos and her mobility is deteriorating; it takes two teachers to change her and they have no lifting devices; she has fallen in the playground three times in the last week; access to the therapies and facilities she needs is limited. The sensory room, the daily physio, OT and SLT, the hoists and mechanical devices, they’re unavoidable. Did I think they wouldn’t be? Didn’t I know that my daughter has a regressive syndrome and that scoliosis, epilepsy and a whole host of other complications are on the cards? No, yes, maybe. I knew, I just hoped for other. I hoped that, at the very least, we would get a little longer.

So I sit in the car park and cry. I picture Hannah feeling sad and lonely and unable to tell me. I imagine her wondering why I have taken her away from the place and people she loved, but unable to ask. I fear that she will miss all that noise and movement and life and will retreat into herself, and I will lose a part of her again. These are the thoughts that make me ache inside and want to crawl back under my denial duvet.

Psychologists generally term being in denial as a bad thing, a ‘refusal’ and ‘repudiation’ of facts. When your child has a regressive condition, one which you know is going to bring her more pain and suffering, which you will be powerless to stop, one which may curve her spine and steal her legs, give her fits and take her breath, then I think being in denial might more aptly be considered ’survival’,  ‘sanity’ or, even, ‘hope’.

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