Bonfire Night

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.

We are where we are

20 February is always a memorable date for me, as 20 February 2001 was Joshua’s due date.It was when Doctors and midwives told us that he would arrive and it is when he should have arrived. At the time, mothers were allowed to go two weeks overdue before they were induced, but we had no monitoring of the baby during that time. The date was arranged to be induced, we were to present ourselves at hospital on Sunday 4th March in the evening, if the baby had not already made an appearance, which he did not of his own accord.

So my husband left me in the maternity ward, in a shared room, and he went back home again. Both of us expectant mothers were given a pessary to induce us and almost immediately, I began to feel different and I was sick. I was uncomfortable, could not sit still so I decided to have a bath  and when I got out, I was in pain and was given paracetamol. Even though I knew why I was in hospital, I did not connect my stomach pain with labour as it had all happened so quickly. The nurse called my husband to bring him back and I was taken to the labour ward, much to the irritation of my room-mate.

I don’t have a clear memory of the next part, maybe due to gas and air and possibly due to nature’s self-preservation, but I recall that every time I shut my eyes and opened them again, more medical staff were in the room. There was a sense of urgency to get Joshua out quickly and I was told that I would be prepared for a Cesarean if I could not push him out. That was enough incentive and he was delivered ,but taken away – although my husband says that that they laid him on my chest briefly first, I have no memory of our first cuddle.

When the Doctor came to see us later in the day, he said that the placenta had stopped working at some stage, and that he was a much lighter baby, at 6lbs 3, than he was going to be and that his skin had gone “baggy”. So as I say, Joshua should have been born on 20 February and then his future might have been very different. I am not sure if he had his stroke during that fortnight or during his birth, but I cannot help but feel that it might not have happened at all if he had arrived on his due date.  If that had happened, he would have been 18 today and like his peers, he might have been going to the pub for a pint, going to town dancing or taking his girlfriend away to Bruges. But ‘what ifs’ are not helpful and neither is hindsight, as we are where we are.