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| Chapter 11 - Terminal |
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Having a terminal child was not what I expected. It was hard, God was it hard. Very very stressful, but not the stress which we all experience from time to time. This was the real thing. Stress which starts to mess with your body, mind, and soul but it was still not the experience I expected. |
Throughout Max's illnesses Sara and I tried so hard to cope. We were not that successful on the first attempt, but on the second we acquitted ourselves. We learnt from past experience. After Max's second prognosis, which gave such limited hope, many people commented how 'brave' we were. To me 'brave' is something conscious, an active and painful choice. In our case I do not think that this was applicable. It was something much more primitive and subliminal, a sort of basic survival reflex. Events had become so bad that they surpassed the worst of the leukaemia times. A point is reached where any normal frame of reference becomes meaningless so you create your own. We passed beyond the day to day or even hour to hour existence that characterised our worst times. At this point we lived almost normally, our frames of reference became what we defined. We set out our own private normality and we lived by that. |
After Max was diagnosed as being terminal our lives became incomprehensible to an external observer but for us it was the life we had to lead. We slipped into an 'alter-reality' where there was no connection with the life we knew before. We tried to live normally with a dying child. |
There was never a feeling of strength. We just learnt to accept . |
How do you contemplate the death of your child? I had spent two and a half years thinking about this question. You wonder if and how you can be capable of dealing with such impossibilities. I used to wonder how people keep going after the death of a child. Some don't. I read of a father who had committed suicide after the death of his daughter in a heart operation after treatment for leukaemia. He continued to hear her calling 'Where are you Daddy?' until it all became too much for him. This was five years after she died. I found it very difficult to reconcile myself to stories like this. How do you contemplate the years of pain that are to follow? In general, I didn't. They were fleeting thoughts. My sentient time frame only extended to the here and now. |
Our ability to cope with Max's impending death had the same qualities which allowed us to cope with Max's minimal chances of survival. It was the same coping mechanism that enables people to survive in Serbia or the Holocaust. Whole communities are wiped out but we have no way of contemplating these circumstances in our own prosaic lives. |
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