November the 5th is a significant date for our family for a couple of reasons : It was at a bonfire party back in 1983 that I finally relented and agreed to go out with my husband , after him asking me for over a month. So it represents a special anniversary for us and 36 years seems a lifetime ago – it took us another 12 years before we got married.
But also, Bonfire Night marks the first full seizures that Joshua ever had and it was terrifying. He was 8 months old and we wrapped him up well to take him to a local firework display and bonfire party as it was a typically cold, damp November night. I do not remember anything about the bonfire or whether baby Joshua was interested in the pretty colours and loud noises of fireworks, but the drama began when we got home. We removed his layers in front of the wood burning stove, to try to warm him up and he began fitting. His little body was twitching and his eyes rolled up inside his head for what seemed like a eternity, but then it passed. We did not call an ambulance or take him to A&E – which seems very cool of us now I think -but I took him to the GP the next day and described what had happened. Rather than using the epilepsy word, he thought that it had probably been febrile convulsions from the extremes in temperature that his small body had been exposed to in the one night.
It was terrifying to witness and of course, you feel so helpless as a parent – all you can do is reassure and comfort your child and wait for it to pass. 18 years later, Joshua’s seizures are still frightening to see, that does not get any easier, but I have got more confident that they will pass and of course, now we have emergency medication to use if they do not stop on their own. Joshua was delighted to see me home last night, he came to seek me out when he heard my voice in the kitchen and gave me a beam and several bear hugs. He was unusually content just to sit next to me while we ate our tea and then he enjoyed his bath. He went to bed around 8.30 and I came downstairs and was watching TV, when he appeared again. I took him back to bed and lay next to him for a few minutes, when suddenly his body went rigid and he had a seizure. It was just a single one but it lasted for around one minute then he relaxed. I stayed for a while longer and after more than a 15 minute break, he had another single seizure, which is not his usual pattern at all. I stayed for a while longer, until he fell into a deep sleep and then I came downstairs.
Seizures have sadly been a part of all of his life, from his early days in special care, to that fateful Bonfire night, right up until last night. We have taken some drastic measures to try to remove them from his life – the most dramatic being brain surgery – but although they are reduced, they will probably always be something that Joshua will have to live with.