Sunday night is a time for reflection, a time to look to the week ahead and see what it might bring : I know that I have some fun things to look forward to this week : a visit from a friend over from USA, lunch with a colleague, some time in school and my Parent Coffee Morning on Friday. That is what I am expecting but you will know by now that I have a lot of unpredicatbility in my life. Joshua has taught me flexibility and spontaneity, in that his seizures could throw a spanner into any of those plans, with very little notice. Fortunately those who know us well, are prepared for last minute changes and recently, he has had a run of bad Thursdays for some reason.
We try not to be yellow-bellied about life; there was a time when Joshua’s unpredictability meant that I would be reluctant to make any plans, for fear of breaking them. But that felt as though life was passing us by while we were waiting for seizures, now I feel that it is better to make plans and if needs be, change them accordingly. We do not tend to share our plans with Joshua in advance, so he cannot be accused of scuppering them deliberately! Without any real sense of time, Joshua must feel as though everything in his world is spontaneous; he may not have a sense of when the school holidays are coming or when is his one weekend in four for respite coming up, so each morning may well be a surprise for him, as he may not even know if today is going to be a weekend or a school day. I cannot really imagine what that might be like, as the first thing I think upon waking is, ‘right, what day is it? what am I doing today?’ and Joshua will not , as far as I can tell, have those feelings and neither does he have my same control over his own daily plans sadly.
Given that Joshua is not in control of his own destiny, I feel a sense of responsibility to ensure that his days are as enjoyable and full as possible. As a sleepy teenager, he may well prefer to spend his weekends dozing in bed, but we compromised yesterday, and after a morning asleep, we took Daddy out for Father’s Day lunch and then we looked around the Festival of Food & Drink before returning home from our weekend away. He is exposed to plenty of different life experiences and social situations, which I am certain is good and enriching for him. So let’s see what this new week has in store…….