Shouldn’t really be writing on here right now – need to be getting Matthew & Hannah ready for school!
Jack went into respite care yesterday….the first break we have had in a good few weeks. Trouble is the older Jack gets and the more expressive he is getting about his likes and dislikes…and for some reason he seems to hate being away from home.
We had marvellous plans for tonight…taking Matty and Hannah to cinema…something we can’t do with Jack as any sort of exposure to cinema screens or tv for too long will set him off with his seizures. However I had a call from respite last night at 9.30pm…seems Jack has had a bad day with his seizures…..so not sure how the day will pan out. On average Jack will perhaps have two seizures a fortnight when he is at home, but whenever he goes to respite he has a terrible time…three seizures in one day is not normal for Jack.
I will ring respite when I get back off school run….and see how he’s doing. Would just be typical that I have to go and pick him up….and as usual it will be just one of us doing the cinema trip with the other two. Always ends up like that these days. As much as I love my son – and believe me I would be desolate without him….I sometimes yearn so much for “normal” family life…
