Chapter 12 - The End

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He replied with a sorry and pathetic "I'm sorry Mummy."

We all felt like shit. Sara was upset because she'd been rejected. I was upset that I'd been chosen in preference to Sara and was the cause of the incident. Lastly there was our upset semi-comatose child who close to death realised that he had upset his Mum.

I turned Max and then tried to comfort Sara. She would not be comforted. She said that I had monopolised him and that I had forced her out. She said that I had driven a wedge between her and Max and that was why he did not want her now.

There is no easy answer to this accusation. I did everything I could. I tried to do more than was possible. I spent more time with Max than Sara because she found it very difficult to cope with the disjointed sleep. I tended the medicines because she found the battles with Max and the resultant stress too much. I took on these roles because they needed to be performed. My whole life had become geared towards Max's survival and the need to keep us functioning as a family. Nothing else mattered. A rock and a hard place again. The result was that the family had split down the middle. Sara with Paula and me with Max. Would our eventual situation have been any different if I had taken a different path? I doubt it but even rational hindsight does not provide a clear answer.

Looking back, there was nothing rational about our lives anymore. We had passed the logical and rational many months perhaps even years previously. We were now trying to live with our terminal child and we found it very hard.

I have seen a number of children in their last days. It is a pitiful sight. They often do not look like a child that you have ever seen. They are the Belsen children, a bundle of skin and bones, arms and legs like twigs and shadows of their former selves. This is the physical description, and in some sense it is possible to cope with the physical. When you live from day to day with the physical it becomes less noticeable. The psychological deterioration of a terminal child is another matter. There is a quiet burnt out look in their eyes which is far more disturbing. You see the true essence of the soul ebbing away.

I remember watching a programme about Great Ormond Street Hospital. Part of the series featured six year old Hayley who had a tumour on her lung. She had not responded to chemotherapy so the surgeons cut out the tumour. It was about eight inches long and four inches in circumference. The tumour reappeared two months later. She had that burnt out look.

She was a beautiful child and looked a lot like Max when he had no hair. She even had some of his mannerisms. She was asked what she wanted to be when she grew up.

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