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Rett Syndrome and me: Happy new year

Beth Johnsson

photo 8 225x300 Rett Syndrome and me: Happy new yearAs a child, New Year’s Eve was my absolute favourite time of the year, more exciting by far than my birthday or Christmas. Every year we would go to stay with my aunt, uncle and cousins, and New Year’s Eve would be a family party full of silliness, too much food, and brilliantly awful indoor fireworks. I loved it.

Every year I would cry most of the way home and feel totally bereft that it was all over for another year, yet still hugely excited by the prospect of the new beginning and the year ahead, all the adventures I would have to tell my cousins about in a year’s time.

I can tell you when the traditions changed, when the family party evolved into teenage nights out, into house parties with boyfriends, into phone calls home from overseas, but I can’t tell you exactly when the excitement and anticipation faded too. I just know that it did.

I realise this probably makes me a glass-half-empty pessimist, but these days I approach New Year with more trepidation than excitement. Perhaps it’s just a part of getting older, perhaps it’s part of being a control freak and finding an unwritten, uncontrolled year ahead daunting, perhaps it’s because the nature of a regressive syndrome is that this time next year there’s a good chance my daughter has fewer skills and more medication than she does today.

This year I know it’s because 2014 is arriving with a whole heap of baggage, most of which I would rather it didn’t dump on my doorstep. A two-year house adaptation project will, hopefully, finally start, bringing with it four months of demolition and debris to be dodged as we attempt to maintain ‘normal’ family life; January will see Hannah start seizure medication for the first time and her right leg splinted, also for the first time; March will see us embark on the much-feared school transition, building to a painful farewell in July and a new start in September;  son number one will start school at the same time, another transition and farewell which I fear immensely, not least because of the impact of Rett Syndrome on the limited time I will then have with my sons.

I suspect the glass-half-full reader will see all of the above differently, as positives, things to look forward to rather than dread. The reader who is savouring what is left of his mulled wine, rather than lamenting what he has already drunk, will consider that when (not if) we survive each one of these journeys, we will have an adapted house which will accommodate Hannah’s needs and give us all a little more space, a little girl who is less wracked by seizures and able to walk more confidently, and two children happily ensconced in school life with peer groups they belong to. Perhaps, the optimist might suggest, there will be other adventures too – ones for which tiny seeds have already been sown, ones we cannot possibly predict, or ones we dare not even hope for.

Rest assured, my positively inclined readers, I won’t be simply sitting here and waiting for the bad (or the good stuff) to happen. Yes, I’ll be saying my prayers and I’ve made my resolutionst, and the growth of some of those seeds will undoubtedly be on my list. But I won’t just be hoping and praying (control freak, remember), I’ll be working as hard as I can to make the good stuff happen and the bad stuff better.

It doesn’t take a genius to work out what one of my ultimate hopes for the coming year will be, it’s a scientific miracle I hope for every second of every day of every month of every year. I’ll be working damn hard to help make that happen too. So actually, perhaps the half pint I have already drunk has not blurred my vision enough to prevent me from seeing what’s left in my glass.

On reflection, it does all look pretty exciting: a year of adventures and journeys and challenges and maybe, hopefully, a year of reaching destinations, achieving goals and contributing to miracles. Thank you, glass-half-full readers, I feel much better now. I might even go and find myself some of those brilliantly awful indoor fireworks. Happy New Year.

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