I have a lot of driving ahead of me today as I am going to a client to give a presentation and so this has two implications for Joshua : firstly, last night when he refused to go to sleep, after trying to settle him witha story then a cuddle, and having my hair pulled in gratititude, I shut his bedroom door and my own, and told him that I needed to get some sleep. I could hear faint calls for ‘mummy’ and ‘daddy’ as I nodded off. I am not sure if my husband attended to him overnight, or not, but all was quiet when I awoke at 4. Unusually, I forced myself to go back to bed and to sleep and I managed an extra two hours, which will stand me in good stead later.
Secondly, if Joshua does have bad seizures in school, it will be some time before I can get back to him should he require A&E. I should not think so negatively, and it is only a small niggle in the back of my mind, but it is a niggle nonethless. I know that school staff will take good care of him until one of us can be there, but it still feels as though I am taking a risk. I have only once arrived at a meeting, two hours away, to be met with a phone call that an ambulance had been called for Joshua. Of course, I turned straight around but it was a difficult journey back – trying not to speed and keeping focussed on the road, but all was well in the end.
I cannot stay local just on the off-chance that Joshua has a seizure, I could spend my whole life in limbo, waiting for that eventuality. If I felt that anxious, then Joshua would stay at home wrapped in cotton wool but instead he rode a tall horse on Monday night, he goes swimming and he enjoys lots of trips out. Epilepsy is frightening and unpredictable, but we cannot let it rule his life, we have to make the most of the days when he is lively and happy. Of course he has to be kept safe, but that does not necessarily mean that he has to be surrounded by his parents at all times. I have faith in his class team at school, his respite provision and Yorkshire Grandma who will be meeting him from school today, they know what his seizures are like and they know what action to take if they get out of control. Despite knowing this, I cannot stop that niggle in the back of my mind, which will mean that I will be relieved to be reunited tonight.