Despite his 2.30am wake up yesterday, Joshua was very jolly when he got up at 8am and he left for school with a big grin on his face. He managed to stay awake and smiling for his school photograph. But the next thing I heard was when I pulled into my office car park after my lunch hour, when the school nurse gave me a call at 2.30…
She was reporting that Joshua had suffered an eight minute seizure and so, as is their protocol, he had received his rescue medication, and when she called me, he was fast asleep. As it was close to home-time, I drove to school to collect him as he would have been vulnerable in his taxi home. As school is 30 minutes away, I arrived just as the children were all leaving school but I found Joshua still comfortable and sleeping. He did not respond to my voice , he was fast asleep. We manoeuvred Joshua from his bed into the wheelchair and then I wheeled him to the car, and helped him into the front seat. He dozed during the half hour drive home but he was cold and shivery by the time we arrived.
I wheeled him into the house and lay him on the settee, where he lay gazing at the ceiling. I gave him his daily anti-epileptic medication and lit the fire to try to warm him up. I made Joshua some spaghetti for his tea and he surprised me by eating most of it. Then we took an early bath, again to warm up his cold but clammy hands.
After the bath, I changed him into his pyjamas and let him watch a Bruce Springsteen DVD in his bed, while I watched him on the monitor from downstairs. He kept asking for his ‘Daddy’ who attended to him, running up and downstairs once he was home. We read him a story and changed his music choice for Shrek, but still Joshua refused to sleep. At 10pm I decided to snuggle in next to Joshua in the dark to encourage him to sleep.
I know that I slept but I cannot vouch for Joshua, but the next thing I knew was he was standing next to the bed and I had missed him wriggling out. I squinted at the wall clock in the darkness and saw 4am, which I thought was good going , meaning that we had had 6 hours sleep. But as I got him into his dressing gown and downstairs for some cereal, I saw as my eyes adjusted, that it was actually 12.20am!! we had actually had 2 hours sleep at most.
So we are now downstairs, with a starey Joshua saying ‘Mummy..go’ now that he has enjoyed 3 weetabix with warm milk and two slices of toast. I am going to try getting him back into bed but I am not optimistic. So you see, I have two sons – Jekyll and Hyde – the lively, smiling boy who is very affectionate and sociable and the post-seizure staring, cold lad who cannot settle, does not know where to put himself. I have seen both boys in the last 24 hours and who knows what the next 24 hours will bring?