Chapter 9 - Memories of Max

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We cuddled again after breakfast and talked about his anger. He felt better for the shouting but was confused and fed up with the treatment and the illness and also confused about moving between the hospital and our home. He wanted to feel secure in one place or the other and did not like the constant treks between the two.

I was almost in tears watching and listening to this sad pathetic little wasted figure wrestling with emotions which were far beyond his years. How do you help a seven year old cope with emotions which you yourself can only just cope with? It was hard.

These children have to grow up years before their time. We as parents were forced into situations which we could never have imagined before the illness. Both sides adjust. What we learnt was that honesty always seemed to pay. I am sure that this may not suit all families, but in our case it forged a deep trust between Max and us and I am glad that we took that path.

This all sounds so simple. It was not. The battles continued and were very painful for both myself and Max.

I talked with another family who had similar medication problems with their child. I asked them if it would help if the encouragement came from a peer rather than a parent, nurse or doctor. They were willing to try anything to get their daughter to take her medicine. I talked to Max and asked him if he would help. He was very pleased to be asked and said that he would try. He went to talk to the girl in the presence of her parents and myself. It was to no avail. I suggested that all the adults retire into the background and asked Max to try again. He spent about ten minutes with her again trying to convince her take her medication. Again it was to no avail.

Max was disappointed and we returned to his bedroom. Later that day she started to take her medicine.

This was the point that we learnt that the disease had spread to Max’s spine. His vertebrae had started to crumble and he could no longer walk. In addition to the pain he was sinking fast emotionally.

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