The anticipated seizure never came it seems, but Joshua must have slept for 23 hours yesterday, catching up on the three previous missing nights’ sleep. He finally decided around 7am yesterday to go to sleep, much to my frustration. His legs were so weak that they kept giving way under him while I was dressing him in his school uniform, but I had no alternative, he had to go to school yesterday as I had commitments and neither my husband nor Yorkshire Grandma were available, as they had been earlier in the week. As I put his splints on, he returned to his deep sleep and so he virtually sleep walked to the car ; I reversed it up to the door so that I minimised his walk. He was no company on the drive to school, as he snored throughout the journey. I usually load his wheelchair up with bags and expect Joshua to walk into school, with him helping to push and that way, he greets everyone we meet as we walk down the corridor to his classroom, but not yesterday : as I got him out of the car, his knees buckled from under him and he almost dropped to the ground, but I caught him and lowered him into his wheelchair, throwing the bags out with my other hand.
It was clear that Joshua needed to sleep all day long; at first he was lowered from his wheelchair onto his giant beanbag where he was made comfortable by removing his boots, splints and helmet – they are all equipment necessary only when he is mobile and Joshua was far from mobile. It soon became clear that Joshua was going to remain asleep for several hours and so he was transferred onto a padded bed, where he curled up immediately and was oblivious to the teaching staff and his classmates who surrounded him.
I was shocked when I returned to collect Joshua at the end of the school day, to find that he had orange around his mouth, indicating that he had been awake long enough at some point ,to eat the bag of Wotsits that were in his pack-up. Apparently his eyes had opened during around lunchtime, briefly, but long enough to consume some snacks. Then it was a case of deja vu, helping a very sleepy boy back into the car to drive him home again. He had not achieved much academically at school yesterday, but they had been able to keep him safe as he caught up on his sleep, and for that I am grateful as it enabled me to honour my plans, whereas in the old days I might have been more inclined to cancel and keep him at home with me. Joshua stayed awake long enough, once he sleep-walked back into the snug, to eat his tea, before he got comfy in his armchair and resumed his dreamy state, ignoring Wimbledon on the television, unimpressed as energetic players ran around the tennis court.
At bedtime, I walked him to his downstairs bed, where he curled up again and where he has slept soundly all night. It is his respite weekend again from tonight and, given the difficult few nights that we have had lately, they will be my knights in shining armour, allowing us some catch up time so that we can begin next week, which promises to be a busy one, more relaxed and refreshed and able to cope.