The guilt I feel is rising. I failed him in so many ways. His illness, the management of his seizures, not hearing him on the night. Why did we not have a bed alarm? Why were we not informed he was high risk of SUDEP? Why did we not take more notice of the throat infection? Why is he not still here with us? I failed him in so many ways otherwise he would still be here.

Early on in his diagnosis we decided we would not wrap him up in cotton wool instead we would try to live as normal a life as possible. Cycling, swimming, bus journeys were all some of his favourite things so we were determined to do as much as possible. Herbie was not disabled or epileptic or special, Herbie was Herbie, a little boy who loved to be just that. Did we go too far? Did we bluster through and not consider carefully enough how challenging this was for him?

We recently moved home to be nearer to my family, my Mum and sister essentially. This meant he had to change school and our routines were all disrupted. Then of course we had the Christmas holidays. I wonder if all these things combined were too much for him. I swear I would have stopped anyone of them if I had a feeling it was too much. But I really do wonder if it was all too stressful.

I figure I will be asking myself these questions for the rest of my life. I hope I will be able to forgive myself. I am really sorry Herbie. I know my best just wasn’t quite good enough but I really loved you with all my heart.