Yesterday was such an emotional day, with a couple of reminders of more difficult times with Joshua’s seizures :
1. He began the day getting me up at 5am and insisting on coming downstairs for an early breakfast. Joshua was enjoying some Robbie Williams in the snug, having a little dance in front of the television at 7am. I went into the kitchen to make some porridge, when I heard a crash and smack! Joshua was lying face down on the stone hearth having a seizure, with no warning. I ran to him, shouting for my sleeping husband to come to our aid. I feared that he had cracked his head with the force of his landing and I could not see his face as he was pushing into the ground. I slid my hand under and was horrified to find it covered in blood when I withdrew it! So as his muscles relaxed, I rolled him over, and could see that he had cut the corner of his eye. Though this is bad enough, it was remarkably lile damage for the noise that I heard. I lay him on his back to recover then lifted him onto the settee to be more comfortable.
This was a sharp reminder of the type of dramatic seizures that Joshua had every day in the past : he has been face down in that hearth so many times, as well as cutting his chin on a public toilet and splitting his head open on a garden wall. Joshua has a helmet, but he has not worn it at home for months as he has not been at this kind of risk, until now. So the helmet has been back on today!
2. Tonight on BBC2 , the Great Ormond Street Hospital TV programme was following a 16 year old youth from our region who had epilepsy and was deciding whether or not to have brain surgery (a hemispherectomy) to attempt to cure his seizures. It showed him having his video EEG, a night time seizure and his consultation with our surgeon, Martin Tisdall. In the programme, Jack was able to make his own decision and he rejected the odds that he was given. We opted to go ahead and Joshua underwent surgery last Spring, the day before his 13th birthday.
I would urge everyone to watch this programme on Iplayer as it was a highly accurate representation of the decision-making process that we underwent, the most difficult decision that we as parents could EVER make : we were given a range of odds of achieving some improvement for Joshua and were expected to make a choice on that basis. We always had faith in the expertise of Great Ormond Street staff but it was a huge leap of faith to hand over our precious son to these surgeons and I am not sure that they appreciate just how difficult that choice is for parents. I was put in contact with another mother of another Jack who had undergone the same procedure and I spoke to her so much to gain her perspective as a mother, which is so different to the views of the medical profession. I am still in regular contact with this generous mum who continues to be a great source of support to me.
Joshua’s dad was always more reluctant than I was, I had my eyes firmly fixed upon the prize – this hospital may hold the power to give Joshua a seizure-free life and that could not be ignored. After months of research, discussion and arguments, we opted to proceed with the surgery.
As you can tell from point 1, it did not give us the seizure-free life that we were hoping for. It was a huge ordeal and knowing what I now know, I am honestly not sure that we would have made the same choice again. But we made the right decision on the basis of all available information at the time and I am certain, that having made that choice, we went to the best hospital possible and so , we gave our precious son the best possible chance that we could.