I took a number of calculated risks yesterday : Despite or lack of sleep the night before, I sent Joshua off to school with a whisper in his ear to behave. He was so giddy and vocal in the taxi, and when he arrived at school too apparently, that it was clear now that he was brewing more seizure activity. He was cheeky at school , calling his class staff ‘cows’ mainly, much to their amusement!
I had to drive 90 minutes away to interview a very nice lady and with 5 minutes left on the interview, the inevitable call from school came to tell me that he had had two seizures and was fast asleep. Luckily I was almost homeward bound anyway, as my husband was out of reach in USA! I called again when I was in the car and he had had a third and so we agreed that I would return via school and bring him home with me. Having real confidence that he was in safe hands, allowed me to drive back calmly. It had been a risk to be that far away from him after a difficult night, but life has to go on, we cannot fritter away our time just watching him, waiting for the inevitable seizure.
When I arrived at class at 3pm, Joshua was surrounded by about 5 women, lapping up the attention! He was still calling them cows but when he saw me, he grinned a cheesy grin, then he proceeded to tell each staff member that it was ‘your mummy’! He was still drifting in and out, ranging from vacant and staring to hyper and cheeky, with red hot burning cheeks too. I brought him home but via a store where we had to collect his onesie to wear today for ‘Children in Need’, and while queuing he had another small seizure. That would certainly have taken place in his taxi home and so he would, more than likely, have ended up in A&E as they are not able to give him his rescue medication. So that risk paid off.
The next decision was whether or not to honour our plan to go out for pub tea with a friend and her son. My sensible head told me to take him home and to let Joshua spend the evening on the settee recovering, but I had been so looking forward to going out and I felt more in need of a giggle than I had when we had made the arrangement. So after much deliberating, we went back out again after half an hour at home to change his clothes, give him his medication and to feed the kittens. This too was a risk that paid off, as Joshua managed to eat some spaghetti bolognaise ,much to my surprise, and in between some vacant stares, he joined in by being very affectionate with my friend and occasionally caling the waiter a ‘cow’
So we managed to carry on as normally as possible, despite epilepsy trying its best to disrupt my plans. But after another disturbed night, who knows what today will bring, the roller coaster continues on……