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Living with Rett Syndrome: Remembering birthdays past

Beth Johnsson

Rett 300x193 Living with Rett Syndrome: Remembering birthdays pastAs my son’s third birthday approaches, I find myself thinking about Hannah’s third and how we celebrated. I struggle to recall and then realise why: her third birthday came five weeks after diagnosis and it’s all a bit of a blur. Not because we were so wholly devastated, back then, that life lost clarity: we didn’t know enough about Rett to know we should be devastated.

We cancelled the planned party because a close friend lost her baby at 15 weeks pregnant and a celebration felt wrong. But Rett Syndrome, whatever that was, just didn’t seem like a big enough reason to cancel a party. There were tears, of course, fears and questions, but ultimately only a tiny speck of dust, out of the vastness of the dust cloud that was about to engulf our lives, had landed.

The memories are blurry because since then, the enormity of the dust cloud has blocked some of the sun, created self-protective shadows and made much of what came before hazy. Some things are hard to recall because recalling is too painful, others because it’s like trying to remember a previous existence – so long ago and out of reach. Most of the time, it’s a bit of both.

For Hannah’s first birthday, we went away to a cottage in Cornwall. The self-protective dust cloud settled particularly heavily on that week, blurring my memories enough to make me forget just how much my one-year-old daughter could do. She could rip open her presents, climb on chairs to chase balloons, hold a spoon to shovel in chocolate cake, say ‘duck’ repeatedly in the bath, turn the pages of her birthday books and babble earnestly on the phone to her grandparents. In many respects she was more advanced than both her brothers were at the same age. But the photos are what remind me of this; the memories themselves are stored away somewhere, put on the highest shelf and allowed to gather dust in order that the loss of those skills, of that one-year-old, is somehow less sharp, the colourful, defined memories made dusty grey. When the dust is blown away, the colours are too bright: my eyes water.

A year later, we had a party. Hannah approached her second birthday as a little girl who had around 20 words, could walk and climb, had some imaginary play, could feed herself with help, giggled infectiously and had beautiful brown, wavy hair worn in delightful bunches. She was our first child, we had little frame of reference, to us this seemed ‘normal’. Yes, she had been late to walk, was still unsteady on her feet, was playing alongside other children rather than with them, but these didn’t seem like reasons to panic.

At her party she was unhappy and, at one point, started trembling quite violently, but the next day she had a temperature and we put her unsteadiness down to some virus or bug. Why would we think anything else? In hindsight, that marvellous commodity, perhaps we should have thought something else, made some connections, realised something was wrong, but at the time she was just a perfect little girl who’d had an off day.

By the time the third birthday arrived, it was a little more than an ‘off day’. Since that last party, Hannah had lost almost all her words, was trembling consistently, couldn’t run, had no imaginary play, could feed herself only with help, was shouting incessantly and had pulled out huge patches of her own hair. The graph of development was showing itself to be inversely proportional to her age. Yet despite all that, despite the diagnosis, reality still just didn’t sink in. Sometimes I think it still hasn’t. It seems to me, in fact, that the reality of each stage of Hannah’s life only truly hits home when son number one reaches the same age and we finally understand how that age is supposed to look up close: a lesson in simultaneous celebration and sorrow.

For months now, son number one has been telling me exactly what kind of birthday party he would like, who is coming (I am, luckily, invited), what kind of cake he wishes to eat, and the minute details of the toy he is apparently getting, which appears to be entirely a fragment of his enchantingally active imagination. His guest list is made up of the family he loves and of those he has chosen as his friends. His friends. Not the friends I have imposed upon him, the children of the people I choose to spend my time with, but the small people with whom he has effortlessly connected and whom he now includes in all his best adventures.

Hannah loves looking at photographs, especially of those she loves, but it often strikes me that, with the exception of her brothers and cousins, these people are adults. Not her peers, not friends she has chosen to build worlds of princesses and dragons and pirate ships with; not friends with whom she has whispered secrets or giggled conspiratorially; not friends who will still be around sharing her life long after we, the adults, are gone. The photos of Hannah with those who were her earliest friends, who are now growing into little adults in a glorious world into which she cannot climb, these photos are on the shelf too, and are probably those whose colours sting the most.

And so it is that I approach the imminent third birthday with the usual mixture of emotions Rett has taught me to expect: settled in amongst the excitement of watching him open his presents, share them with his guest list friends, exclaim ‘wow’ at the long-awaited cake and, undoubtedly, question why his dreamt-up toy has not materialized, are the specks of Rett dust, the Rett pollen perhaps, which makes my nose run, my eyes water and my head (and heart) feel just a little heavy on even the sunniest summer’s day.

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  • Karen Cundy

    Another amazing insight written beautifully. A girl unlucky enough to be struck with Rett syndrome but lucky to have a wonderful family around her


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