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| Chapter 9 - Memories of Max |
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The fact that our son was declared disabled had no impact on us. To many this might be perceived as a major step backwards. To us it mattered not an iota. We still lived in the transience of the hour to hour existence. We knew that he needed help in living some sort of quality of life. |
It was a relief when we got Max's wheelchair. From the time he was unable to walk we had become prisoners in our own home. Sara and I desperately wanted to use the time to get out and live given that Max might not survive. It was not quite that easy. Max started to become more and more lethargic and often lay on his bedroom floor feeling nauseous and fed up. |
Frequently we found him just staring into space. Yet again I felt that we were losing him to worlds which we could not enter. We tried to boost his spirits but it was difficult. There was a lot going on in that little head that he would not or could not express to us. I had no way of imagining how he must feel. |
It seemed criminal that we had so much free time and yet we could not use it because he felt so ill. He was at home during this period, and that was good. It added a sliver of normality which we had not had with his leukaemia. |
Every time I asked him if there was something I could do for him he replied "Just make me better." These statements left me feeling so helpless. I was his father, it was my duty to do anything and everything for my son. I tried to do everything and anything and yet I could not guarantee that I could satisfy this simple request. Max seemed to be spiralling into depression again and Sara was worried that he would just give up because he could see no gain. In reality the treatment was working. I tried to talk to him. |
"Maxie, we need to get you fighting again. You're so upset all the time and the more you get upset and moody, the worse it becomes." |
"But I feel so ill and I don't want to do anything. I just want to lie here and be left alone." |
"Do you realise that the drugs are making you better. The doctors say that they are working and even I can see that things are getting better. You must have noticed that the pain and itching have stopped and that the tumour is getting smaller." |
He nodded. The tumour had visibly shrunk. |
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