It was a beautiful sunny day so we did not go anywhere, but stayed in the garden most of the day – cutting the grass, weeding and strimming at first, then lazing in the sun, playing ball with the dogs. It was a perfect day and one when we felt truly blessed. The jubilee activity yesterday was not until the evening, so we were at the local pub for 7pm ready for a barbecue and live music. The pub was busy so initially we sat outside, in the sunshine but by this time, there was a cool breeze, so having struggled to thread Joshua’s long legs into the picnic bench, we proceeded to find a table indoors. We filled our plates full of barbecue food and ate our fill once again. When the band started playing, Joshua looked around for the speakers on the wall, confused as to where the sound was coming from.
We were sitting in the quieter restaurant end of the pub, which was ideal for chatting but Joshua was bored and he really perked up when later, we moved into the central bar area which was buzzing with people and was nearer to the band playing. Joshua came alive, even though by this time it was past his 9pm bedtime. He was giddy, just sitting looking out at the crowd and of course he gave everyone a thumbs up whenever they walked past him. It is easy to forget that he is a 21 year old man, so that this would be the type of event that ordinarily he might have enjoyed, more so than an afternoon tea with his parents. Although we have gone to jubilee events that appeal to us, we have tried to give him a broad experience of the celebrations, and of life in general.
Often as he had grown up, the easiest thing to do would have been to stay at home; it is always like a military operation getting ready to go out, with the emergency medication and spare nappies that have to be taken wherever we go. We never know how he will react somewhere, he might not settle and so we make a wasted trip. He might get over excited or too hot, and trigger seizures. But even as a small baby we did what we wanted to do, the things that we had always done, and Joshua had to tag along : he was still only weeks old when we packed up his pram with powdered milk and nappies, and we headed off to the Netherlands on the overnight ferry. He spent his first birthday in Las Vegas at my third best friend’s wedding and his third birthday in Florida with his grandparents. He has seen Bruce Springsteen, ELO and Status Quo in concert several times each. Over the years, he has seen several theatre musical productions including Lion King, Matilda, Shrek, The Gruffalo, We Will Rock You and The Wizard of Oz. Before we had Joshua, we used to go swimming every Friday night at a local caravan park, and so from being a baby, Joshua would come with us for a swim then enjoy the disco afterwards as a small boy. So throughout his life, Joshua has been fortunate enough to see places and events that many might envy.
At some stages of his life, he would really rather have stayed at home, having no energy or enthusiasm for sightseeing, travelling or socialising. When his seizures were at their worst, he was too sleepy to really enjoy anything. But at the moment he has both energy and enthusiasm for all kinds of different activities, particularly if they involve young people and food. In fact, he expects some kind of outing everyday, even if it is just a quick trip to the shops. So that is why he is embracing daycare so much as they take him on different types of outings each day and he will soon begin to go swimming with them on a weekly basis too, which is both fun and good for him too as he does not get very much exercise. Soon he will resume horse riding with RDA once a fortnight too.
Joshua has mobility and intellectual limitations placed upon him by his stroke, but we have tried hard to ensure that his life is restricted as little as possible and to ensure that he has as much fun and variety of experiences as are possible. He has certainly had a busy week celebrating the Queen’s Platinum Jubilee and it will be his final event today, a community picnic in the park back at home, so lets hope that the weather plays ball.