Be careful what you wish for

When I dropped Joshua off at his respite provision on Wednesday ,  I remarked that I would have liked them to have experienced one of his sleepless nights for once as so far, he saves those for home. But be careful what you wish for: he had a seizure at 11.35 pm in bed and that set him up to be awake all night long. He stayed in bed calling out mostly but occasionally ventured out to find some staff, only to be brought back to bed.

So when I collected him, they were surprised at how giddy and happy he was given his lack of sleep. He gave me a huge grin and a bear hug, showing how pleased he was to see me. He stayed lively on the journey home too. But it was possibly an exaggerated happiness as it was an indication of what was to come….

We have come away for the weekend with a friend and a classmate of Joshua’s. On the journey here, Joshua had another seizure in the car which transformed the giggly , interactive passenger into a staring observer. I was surprised that he enjoyed his tea when we arrived and even more surprised when he asked for his bed around 9pm. I tucked him in but he was so restless that within minutes he was heading downstairs again. So then I kept him on the settee until we are ready for bed at midnight. But then it was a marathon of wakefulness all night long. So after two nights of no sleep, and two more seizures in the night, who knows what his day out today will have in store with his sleepy companions. 

Epilepsy does not respect when we would prefer it to stay away, in fact it is more prevalent on these occasions I find. It could be driven by excitement or simply rotten timing!

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