Wednesday, 17 October 2012

Hemiplegia Awareness Week

It was a few days before Christmas, our first Christmas as parents as our son had been born in the spring of that year. But instead of shopping for presents for our baby, we were sitting in the waiting room of the Sick Kids in Edinburgh. It was busy and noisy, everyone hot and bothered in winter coats, babies bundled up in those all in one suits and prams causing chaos. 

It had been a difficult year. Just after I'd discovered I was pregnant my husband's job had been moved from Peterborough up to Edinburgh. We were delighted about this but the timing was terrible. I'd been left to sell the house and sort things out whilst still working full time, and odd hours, as a reporter with the Eastern Daily Press. I finally moved up to join my husband in the lower villa we'd bought just two weeks before our son was born. Apart from the stress of work, selling and buying houses and moving, I'd done everything I could to prepare for a healthy baby. I'd cut out alcohol, kept fit, eaten well, read everything I could find about pregnancy and babies. 

Our son was born naturally at the Simpson Royal Memorial Pavillion in Edinburgh in late May 1990. Everything seemed to go well, he was a week late but was a good weight. It wasn't easy being a new parent in a place where I'd just moved to and knew virtually no one. Neither of our families were nearby - the nearest were north of Glasgow and my parents were in Yorkshire. 

Our son was about three months old when I realised he wasn't using one hand as well as the other. The one person who I knew in the area was on old school friend who had studied medicine at Edinburgh and had stayed on in the city. She was also a relatively new parent and so was able to comment that at that age babies normally use both hands equally. The next time I saw the health visitor at the clinic I mentioned the difference I'd noticed, but it wasn't the usual one that I'd got to know and she obviously thought I was just an over anxious new mum. But the difference between his hands continued and the next time I saw my regular health visitor I mentioned it again. I was whisked in to see the GP. She said she would refer him for tests. I was thinking it was something like a trapped nerve but she vaguely indicated that it could be something else. We had know idea what she could mean and we remained naively hopeful. 

So when we were finally called in to see the specialist at the Sick Kids we had no idea we were about to be hit with a boulder of news from a great height. What the specialist had to say remains a blur. I went into the room believing a simple operation could solve this problem and came out with a disabled child. We had been given the news as if he was confirming something we already knew, starkly, without warning, your son has cerebral palsy; next patient please. We found ourselves back in the corridor with our lives turned upside down. Thankfully a physiotherapist made arrangements to see us a couple of days later and she then answered all our questions. But it was a long two days. 

As a journalist I had covered countless numbers of stories about disabled children, people campaigning, fundraising and, of course, these had been some of the most serious cases. I had no idea there was a spectrum, no idea what to expect at all. As we'd left the hospital to return home I found I couldn't look at my baby, as if the saying of those words .cerebral palsy. had cursed him, somehow transforming my son from the bright, healthy adorable eight month old baby I'd taken in to what? I had no idea. 

In June this year we attended my son's graduation. He gained an honours degree in history and politics and is now studying for a masters. He is involved in several societies at the university and also fences and is preparing to take his black belt in karate. We are immeasurably proud of him. 

Thursday, 11 October 2012

Blethering at Wigtown Book Festival

I have to confess that I enjoyed the Wigtown Book Festival more this year than ever before, even more than last year when my book 'The Belties of Curleywee Farm' was being launched at the children's festival. I was pretty stressed by the whole thing then. It was an odd situation for me too. I was working at the children's marquee selling the books for the official bookseller G C Books - far too many books in this sentence - and then I had to suddenly appear as an author. Illustrator Pauline James and I had never done an event before and we attracted one of the biggest audiences of the children's festival. Despite being somewhat chaotically organised (can you be chaotically organised?) we had a fun time and the kids seemed to as well. I chatted about black and white animals, read the book and Pauline talked about the process of creating the pictures or 'colouring in' as she put it. This process included cycling round the Machars, the area of South West Scotland we live in, and sneaking up on Belted Galloways to try and draw them. As Pauline only wears evening dresses (I'm not making this up) this would have been a bizarre sight for any passer by. I think one of the 'Belties of Curleywee Farm' series should be about an eccentric woman in evening gowns trying to draw them from strange hiding places. 

So, last year's festival had it's pressures and that doesn't include the running around, juggling things at home and worrying about my elderly mother who was unwell. This year was great, there was a fantastic selection of authors and illustrators in the children's marquee including Jonathan Meres, Debi Gliori, Cathy Cassidy, Tony de Saulles, Stuart Reid and Damian Dibben  and they were all really friendly. Not a single snooty 'I'm an AUTHOR' amongst them. We even had a six foot hairy haggis appear in the tent. 

There were relatively few author issues this year. It's sometimes difficult dealing with authors, seeing the side of them when they switch off from performance mode. One chap grumbled about having to finish even though he'd been allowed to overrun by more than ten minutes and another author obviously has an internal stopwatch as she allowed people a limited amount of time while book signing and then switched off, the shutters came down, times up, that's your lot. And from what I've heard there was only one person obviously drunk this year, which is pretty good going. I know it cannot be easy doing the rounds especially for writers who live for the majority of the year in a garret creating their books, waiting for the silence so that they can hear their imaginations as Louisa Young so eloquently put it. Louisa Young was one of my favourites this year along with Tahir Shah. 

Wigtown, I understand, is now the second largest literary festival in Scotland. For buzz and friendly welcoming atmosphere it must easily be best. I wandered in to the Edinburgh Book Festival during the summer and quickly wandered out again. I know it's a different beast but it came across as a series of rooms closed off to the casual visitor. Apart from the book shop and a bar there wasn't much you could happen across whereas Wigtown is full of things that you can get involved in even if you haven't got a ticket for an event. Artist in Residence Joanne B Kaar could be found at the top of the building (and loose about the town at times) weaving with the Wigtown Waggers. On the way to her studio you passed through The Gallery, an exhibition space that was constantly changing with views across Wigtown Bay nature reserve as well. Photographer Kim Ayres took pictures of people dressed up as fictional characters and tucked in a little studio on Harbour Road there was a display of the 'Gifted' sculptures, little works of art made of books that have been anonymously donated to different bodies in Edinburgh. And, of course, as Wigtown is Scotland's National Book Town, you could spend all your time just browsing in the fabulous second had bookshops, or if you're Tahir Shah, running your hands along the leather spines.