Chapter 12 - The End

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"I think I'd like to be a model, or perhaps a lady who works in a shop. No, really I'd like to be a mermaid."

Such innocence. She died six weeks later.

On January 14th, two weeks after Max had started his downward spiral, he had a full blown fit. We had been warned that this might happen if the disease reached his brain. He had seven tumour sites that I knew about and I suspected that the cancer had reached his brain because he had lost the use of one eye. We had been waiting for this with dread. The fit was very frightening and distressing for everyone.

There was no warning. Suddenly he cried out and his arms and legs were flailing wildly. It was as if someone had poured water into his control circuits. His head shook from side to side and there was a ticking grimace as his face contorted. It was as if there was a random trigger in all his facial muscles, a spastic desperate chaotic dance. Beneath all the physical horror was the fact that we could see that he knew all this was happening. He gave desperate little cries from his dehydrated mouth and there was a look of true horror in his good eye, a look of total fear.

I managed to give him rectal sedative and after seeing that a patch had come off, I also gave rectal morphine. I was in tears. This was the first time that I had cried in front of Max throughout all his illnesses. My crying caused him more distress. Sara and I were not sure if he could understand our words, but he definitely reacted to the tone and emotion within our voices.

Sara and I spoke soothingly and gently to him, stroked his head and legs and gradually he calmed.

This was a brain haemorrhage. This was what we'd always prayed would never happen. We did not want to watch the slow degeneration of our son into a vegetative heap.

I always worried that we would remember Max in terms of his last days as opposed to the wild ebullient child we had always known. In the end it did not matter. The deterioration was gradual. The child is always yours and is always the child you have known and loved. When it is gradual, when you have been living with this slow deterioration which accelerates toward the end, you do not look at your child from the outsider's perspective. You cannot take the objective point of view. You are there and you live through it all. You see the shock of those who have not seen your child for a while, but for you this is always your child. The outside appearances do not matter, they are superficial and not what you remember. Time does her job well. She leaves you with the person and not the body. I am grateful for that.

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