The rollercoaster of making plans

Today Joshua and I are due to go on an outing organised by school, in fact all of the special schools across our city are going. I have been looking forward to going to the wildlife park, despite the wet forecast for today. However Joshua’s seizures put it under threat last night : he had a seizure while out with his PA yesterday afternoon, and as he did not recover as he should, so she administered his rescue medication. he was snoring his head off when I got home from work and slept for around an hour.

Once awake, he was very wide-eyed and clammy and could only manage some mashed potato with vegetables for his tea. He was quiet during his bath and having got into his bedroom from the bathroom, he looked around the room like he had never seen it before and cried out ‘mummy!’ and with that,he had another seizure and fell backwards onto his bed.

As I sat next to him, reassuring him, I was beginning to review the likelihood of being able to go on today’s trip – should I cancel? should I go in my own car rather than the coach so that we can escape under our own steam if we need to? should we text the trip organiser to forewarn her? should we just take the risk and go as planned? did he need more rescue medication? was he allowed any more Midazolam after his first dose earlier in the day?did this mean that Joshua was going to stay awake all night? would we be able to manage, and enjoy, the outing if neither of us slept at all?…all of these questions raced through my head, while reassuring Joshua that everything was going to be ok and telling him how unfair all of this was, that none of this was supposed to happen to him anymore…

But, we both snuggled down to sleep, without any emergency medicine, and thankfully he is still sleeping soundly now. All being well – which is as much as I am prepared to say at this stage of the morning – we should be able to join in and enjoy today’s outing, during which the rain really will be the least of my worries!!

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