Half term is upon us and so, as is our tradition, we had planned to go away and have the week to booked off with Joshua. I had transportation booked and bags were packed but epilepsy had other plans for us : Joshua had three seizures on Saturday in total and so by 2.30 Sunday morning, he was wide awake and completely disoriented. I awoke with his having climbed out of bed and calling for his ‘Daddy’, so we came downstairs for cereal with banana, trying the sleepy food’ that I had learned about.
The banana did not work its magic and we were both awake all morning then, until 6.45 when he had the need of his emergency medication and almost immediately he fell into a deep sleep, like a contented cat, in the armchair, where he stayed until 3pm! As soon as I had administered Midazolam, I re-considered our travel plans. It was not sensible to try to move Joshua in such a deep sleep and he certainly would not have appreciated a 6 hour drive to our planned holiday destination. I was disappointed but knew it was the sensible thing to do so I made that recommendation just as soon as my husband awoke. He agreed and so I changed our travel bookings and got my head around having an additional day at home.
We are accustomed to having to change our plans at the last-minute, this has been a feature of our lives since Joshua’s epilepsy really took hold. It is this reason that I often leave plans to the last-minute, as then we have a better idea of whether or not we are going to be able to honour a commitment! This can feel preferable to letting people down.
But I am not going to let epilepsy rule our lives completely; yes it disrupted our plans for yesterday, but it will not prevent us from going away all together as then it would have taken over all of our lives and I am determined that this will not happen