I have not felt bad about Joshua having monthly short breaks for a long, long time : I know that we all need that time away from each other in order to refresh our batteries, to top up and to renew ourselves ready for the month ahead – in fact two months in this instance, as we do not have a respite weekend booked in September, instead we are having two in October! This time I have had my doubts that Joshua wanted to be there, given the sad send off that we received on Friday. To make matters worse, he had a cluster of seizures yesterday and he needed his emergency medication.
In my experience, it is when you are ill that you want to be back home and that you need your mum, but Joshua had neither. So I will be pleased to pick him up this morning and to give him both of those things that were missing, when he needed them most. When he has had his rescue medication, he tends to go very drowsy; as I undertsand it, Midazolam is an anaesthetic, so it calms the brain down, which is why his seizures stop, but inevitably it calms the rest of his body down too, so he slows down and often sleeps. When he was a little boy, as his dose has never changed, he would go into a deep sleep for hours and hours, now it is just 30-60 minutes typically, but then he is rather dopey and slow for the rest of the day. It sounds as though Joshua did that yesterday : hour long sleep and then he was alternately lively and cheeky, then he would crash again and need to sleep or just lie down. I was reassured that in his wakeful moments, his sense of humour and his appetite did not desert him!
I know that this only happens fortinghtly, or even monthly, now but it is still devastating each time and it makes me feel so much worse, to know that we were not there. Fortunately, the respite staff are likely extended family to him now, so provided he was with someone familiar, I am sure he will not have been too frightened. The seizure contorts the muscles in his face but it gives him a terrified expression on his face, which is never pleasant to witness as you wonder how he is feeling and is his face reflecting his actual fear. I would love to have one of his seizures so that I knew precisely what he was going through.
It sounds as though the respiet staff did exactly the right things yesterday , I know that he was in safe hands. But when you are unwell, there is nobody quite like Mum is there?