He stayed awake all through that Saturday and in the afternoon, Colette, came to see him. He was thrilled and was laughing and joking with her. She was actually looking after someone else that day, but kept popping in to see how Simon was doing. As the day wore on our visitors went on their homeward journeys, after hugs and kisses all round.

For somebody who hadn't slept in almost 24 hours, Simon was amazingly alert, we spent the rest of the evening chatting with the different staff members who kept popping in and out. Colette came to see Simon before she went home at 9.30pm and gave him two big lipstick kisses, one on his cheek and one on his foot, then she said goodnight and left.

It was the first time all day long that Simon, Vince and myself had been on our own. Simon sank back in his chair and relaxed. About two minutes later Simon had a headache that the morphine was not dealing with, this happened a couple of times and so our carer Anne said she would go and contact the doctor. Before Anne got to the phone Simon was passing away, it happened just as God had shown me it would, there was a fleeting look of panic on Simon's face and then a look which seemed to say 'you were right mum', and then he'd gone. Those few seconds seemed to last for hours, we tried so hard to hold on to him and kept talking to him all the time, telling him how much we loved him. We felt so helpless, this was something we just couldn't protect our child from. As parents all you ever want to do is protect your children and ultimately, we couldn't.

We took care of Simon after his death just as carefully as we had before. We moved him from the TV lounge where he had passed away, back into his bedroom and laid him on his bed to await the doctor who would certify the death. After the doctor had been, Anne sat with Simon whilst we went and made the necessary phone calls. We contacted Amy first and she was devastated, she joined us back at Rainbows at about 1.30am. To this day, Amy still feels guilty that she wasn't present when Simon died, but we have explained to her that she probably made things better for Simon by not being there. We came to the conclusion that if Amy had been present, then Simon would have been very stressed, he would not have wanted his baby sister to have experienced his death.

There is a 'special' room at Rainbows which is temperature controlled and decorated just like a beautiful bedroom, the child can stay there until the time feels right to make the necessary arrangements to have them moved. We bathed and dressed Simon and took him into the special room, where it looked as though he was asleep. We could still spend as much time as we wanted with him and as he passed away on a Saturday night, Vince and I decided to stay at Rainbows until we could contact the funeral directors on the Monday after we'd been to the registrars. Even now we couldn't face the thought of leaving Simon.

The staff at Rainbows always treated Simon with the utmost respect and care, even after he'd passed away. They would always ask us if it was all right to go in and see Simon. They all wanted to go in and say their goodbyes. He had made the most astounding impression on everyone that he came into contact with. He had several little tokens of love and respect laid on his bed.

We'll never be able to thank the Rainbows staff enough for what they did for our family in giving us a lovely, relaxed atmosphere for Simon to spend his last weeks in. For always being there to talk to or just give us a hug, when we couldn't talk. For just letting us do things 'our way' and thus be satisfied after Simon's death, that we had done everything humanly possible for him.

We feel so thankful that Simon was able to talk to us until the very end of his life. It was bad enough that he was dying, but we know it could have been a whole lot worse. His philosophy was 'It's not over 'til it's over, so enjoy every single moment of it, never put off what you want to do. Tell everyone whatever it is you want to tell them, leave no loose ends. Hang on to life with all the strength within you, but if that time comes when you have no choice about whether to go or whether to stay then find the peace that is God given and go towards the light. Be not afraid, it only takes but a second to die'.

Simon passed away on 18th April 1998 with both Vince and I at his side telling him how much we loved him. Sweetheart, we are so very proud to have been your parents, we'll see you one day in Heaven.