Working with children that are terminally ill can be really challenging as one would expect. I am often asked ‘how do you do your job?’ The answer is not simple. It is hard. Very hard. To be involved in other people’s pain and loss on a daily basis is really heart breaking and very terrifying.
Over the last few months we have been helping a 13 year old boy with a slow growing but relentlessly progressive tumor. He is going to die and his condition is deteriorating. A few weeks ago he started to have visions of dead people, that he describes as demons. Many children experience such visions; very often they will describe a deceased family member that is coming to collect them. Very often they are not afraid. But this young chap is afraid of his visions. He is scared because he doesn’t see them as being friendly. He doesn’t know them at all and although they are trying to get him to go with them, he doesn’t want to go. It is just so hard to manage this terror and reassure him.
Similarly, his family are afraid to talk about this with him. I suspect that even as adults they do not know what they believe, or what demons or angels really are. Who does?
What it does suggest to me is that we are all in some way afraid of talking about death and dying and yet it is the one guarantee we all have. That and taxes, of course. But why not start talking about it in a normal way. It is after all a normal process. Families and friends should be able to discuss their views, feelings and fears. Perhaps a shift in attitude is required. Not talking about it does not make it any more likely to happen or not!
At the same time our job is very rewarding. Being successful at my job, doesn’t rely on whether child lives or dies but rather on how well they do so. If we at Umduduzi have managed to make a child comfortable and walked with a family on this horrendous journey and eased even a fraction of their difficulty by leaving them feeling loved and supported, then we have done our job and done it well.
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