Jack has been at playscheme all week. I think he has taken it upon himself to frighten all the new girls working there!
When I went to pick him up yesterday, Francis, who manages the scheme said that he had taken a seizure which was quite violent and not one they had seen for a while. No sooner had they gotten over that one but he went into another one. This one totally different from the other but just as horrible.
She had just finished telling me that when he went into another one and I had to get the magnet out and use it to stop the seizure. Francis called on one of the girls to watch what I was doing as she is one of the auxiliaries from the High School who will be working with him after the summer. By now Jack was in full seizure mode, lips blue, face grey and I was quietly urging him to breathe when he finally started coughing and choking! It was only 2/3 minutes but believe me it seems like a lifetime when you are watching!!! Afterwards I looked up and they all looked quite shocked and worried and I realised how normal this has become for me and I forget just how "not normal" it actually is.
This always kinda brings me up short because believe me I don't want it ever to be something that is normal. I don't think any parent should ever have to see their child have a seizure as it is the most horrific thing ever. But if I don't ever accept it as being an everyday event then how can I learn to live with it? Because it has become so normal for me, I then have to keep reminding myself how it must be for the people who look after him in school, at home and in respite.
It is a huge responsibility. His life in their hands so to speak. Luckily for the people who look after him though, they have a support network of other staff around them and this helps enormously. And they have so much training under their belt and my boy makes sure that they get the opportunity to use it!!
Back home, Jack had a few more seizures and one that was so bizarre that Holly and I burst out laughing cos he was making the funniest of faces during it. Not very PC I know but that is our coping mechanism.
We even have names for some of them: there's the Zombie, where he just goes rigid with one arm raised and he seems frozen! Then there's the Stricken Chicken, where he is jerking his body back and forth and the Wavin' Raven where he is waving his hands around while his legs are kinda doing the same!! How's that for being so not PC???
You have to laugh other wise you would cry! Laughing uses up more calories, so you'd think I would be skinny right??? NOT!