One of the many things that I have learned, having Joshua in our lives, is to embrace flexibility and the ability to be spontaneous. His seizures can force me to change my plans at short notice, whether I like it or not. This flexibility was fully tested yesterday :
After my work yesterday, I returned back to Mum’s house to collect Joshua from her care. He was pleased to see me, gave me a bear-hug, and I suspect that Granny was relieved to get her house and life back to the way she likes it too. I packed the car and we were on our way within ten minutes of getting back. My plan was to divert on the way home, to see my friend’s new flat, where my husband had been helping her to move in all day. The deal was that I would arrive once all the lifting was complete and that we would all have a takeaway tea together , to christen the new flat.
Sadly Joshua’s epilepsy had other plans as he began to have seizures, on the motorway as I was driving acorss the pennines. It was frightening as there was very little that I could do being alone, other than hold his knee next to me and try to reassure him, as I counted 25 seizures in ten minutes. I cannot recall that stretch of motorway at all and I know I was just intent on getting to the motorway services, where I could stop safely and attend to Joshua. He was still fitting when I could stop and so I jumped out of the car, went round to the passenger side and administered his emergency medication. I then sat next to him, waiting for it to take effect – it can take up to 15 minutes to stop the seizures. Thankfully they stopped within about 7 minutes and then I waited to be sure and I reclined his seat , so that he could sleep. But he refeused to relax, he would not rest back on the reclined chair. After about half an hour, I decided it was safe to continue my journey.
I arrived at my friend’s new address at around 6pm, and called her , only to find that they were back at the old address picking up the final boxes. As this was an hour away and as Joshua looked so pale and exhausted, I apologised but decided to take him home rather than waiting another hour for them to get back to where I was already waiting. I was really disappointed, but I know it was the right decision for Joshua. We were home before they had returned to the new flat, and that included a trip to Donalds Drive-In to try to cheer him up – it worked, as he was shouting ” Doanlds” at the payment window and he devoured his Happy Meal. Often seizures make him hungry or thirsty , so that was another good decision and it meant that I did not need to cook once I got home.
So Joshua’s epilepsy has tested my decision-making skills to the limit : it is never an easy decision to administer his rescue drug as it has such a dramatic impact on him, but when the seizures do not look as though they will not stop on their own, it is a necessity. It is a further test of putting Joshua’s needs first : I really wanted to see my friend and her new flat, but she understood that I had to put him first and there will, I know, be plenty of other opportunities to visit her. So the journey did not go to plan but that’s nothing new. As John Lennon said ” Life is what happens while you’re busy making other plans!”