31.12.18

Our daughter’s watching The Muppet Christmas Carol.  She’s come back from a Snowman show with one of her PAs and is tired but unrelenting in her desire to keep the Christmas theme going. My partner and I had taken advantage of this outing to do something we couldn’t otherwise do before the holidays begin and had a lovely walk in the seaside sun, stopping for coffee, shooting the breeze, thinking only of ourselves. Now we’re home together, just the three of us.

It’s getting to the end of the year.  We’ve passed the shortest day, the longest night. Our chance to put our feet up a little, stop thinking about work, enjoy uninterrupted time together away from anyone’s gaze. We are lucky to have a great team of carers for our daughter at home but having people around most days can be a little wearing.

My partner and I look at the cards we’ve received and catch up on the annual news that old friends and acquaintances have sent us. We’re not as sociable or adventurous as we used to be and somehow our news never seems to be as exciting as theirs. Our pace of life is slower for a start and most things we do require careful planning, always subject to cancellation if our daughter is unwell. We tend not to go too far afield although we managed a short break to France. We have become better at maintaining a finer balance in regards to both family and our individual pursuits. That’s quite something I guess.

Our girl’s small achievements continue to thrill us. At school there appeared never to be any as there were no expectations of her. Ours were deemed unrealistic. Yet the other day to our amazement she got up from the sofa and walked across the room to the tv and dvd player to show she wanted to watch something else. Why wait for us to anticipate her wish when she could show it herself`?  She picked up the film she wanted and handed it to us: Home Alone. Oh how we laughed! She doesn’t walk independently as a rule but we’ve always fought hard for her to be kept out of her wheelchair whenever possible to give her opportunities for independence.  It’s paid off.

Another day she pointed clearly at the “this is funny” symbol in her communication book as we talked about the story we were reading together. This was the first time she had done such a thing. It was a big moment. We’ve focused a lot on communication this year. Her symbols book is gradually taking shape, tailor made to her and comprising more symbols per page than many professionals thought she could ever manage.

So how would we sum up our year, we ask each other as we glance at our chilled-out girl sitting cross legged and straight backed in the corner of the living room that she has chosen as her own. She looks well and happy today. She’s secure and settled, loved and loving. It hasn’t been dull or boring, we agree. Like every year it’s had its challenges. Don’t mention the sleep word for example. Or the recruitment of carers. Such a nightmare. But all in all we’ve had fun, done new things and are still learning. And we’re still here. We pat ourselves on the back. Happy new year!