The Facts of Life

I have just spent two days with some of the most amazing and brave people I have ever met in my life. It is not often you are surrounded by such amazing individuals who have such courage and spirit and are gathered not for themselves but for the benefit of others and, in particular, children.

They were not firefighters and they were not police (although, I guess, some of them might be during the normal working week). No, they were just parents although they all had one thing in common. They were all parents of children who had, or who were in remission from, cancer.

Now, we are lucky in that our two girls are healthy. They get all the usual bugs and nasties going around but we wake up each day knowing that they are fine. Imagine the horror if one day that runny nose and temperature wasn't quite right? What would you do? You would never think of cancer - it just isn't talked about as it scares the crap out of us parents and closing your eyes to it is the best way. Why live your life worrying about something that might not happen - that is what we do and there ain't nothing wrong with that.

But, for some, they don't get that lucky. Their kids get diagnosed and they go into the system and the rollercoaster begins.

A lot was discussed this weekend. Mostly you look at the parents and wonder how the hell they survived. I had dinner with a group of parents who went through that. Some lost children, some kids survived but with serious side effects, some were still in treatment, and some survived to become ordinary little kids. They were the funniest group you could imagine and we had a ball. I chuckled all the way home and woke up in the middle of night giggling. They had learnt something that most of us never discover until it is too late. They have learnt to think like kids and to not apply their rules and anxieties onto their children.

It is simple when you think about it. They only live each day at a time. They don't worry about tomorrow. This is not because of the horrific possibility of death but because tomorrow is too far away for most kids. They live each day and make the most of it. Kids dying with cancer aren't worried about not having their own kids, missing University, never learning to drive, never being grandparents themselves. As parents, these are our worries, not theirs. If we imprint these onto our kids, they get confused and only worry about disappointing us by not being able to do these things for us. An 8 year old doesn't worry about being a grandparent, to him or her, being 9 is a long time.

This was the annual Child Cancer Foundation conference and the keynote speakers, Dr John Spinetta and his wife, Pat Deasy-Spinetta were truly amazing. They are both Psychologists from the US and had made the trip to bring their views and observations. They did more than that. They gave people some understanding and advice (like that above) and helped people to make some sense out of this most terrible disease.

All of the speakers were good and each brought a unique perspective. The real power of the conference wasn't in what was said though. It was in the coffee sessions and the dinner where people got a chance to talk and share. One woman summed it up so well. She said that this was the first time that she had felt normal. Being able to talk to others who had gone through the same experience and to not have to hide the emotion was very liberating to her

When you meet someone that has lost a child, the usual reaction is to dance around the subject and to not bring it up. You think that is the best way. Well, it might be for you but the parent doesn't forget and doesn't want to. The pain never goes away and they keep the memories alive by sharing the good times and the stories of that persons life. It is us, with our fear of saying the wrong thing, that don't want to talk about it. We don't want to imagine the pain and so shut it out and avoid talking about it. Damn we're selfish. Sometimes, just listening and offering a shoulder to cry on is all the conversation that a person needs.

I learnt a lot this weekend, and I'm living today. I have stopped worrying about the mess in our front room, it might still be here tomorrow but we're having fun right now and that is all that matters. I am not a doctor and I can't offer any advice on this topic. These parents know more about this disease than most doctors. What I can give is my time and a shoulder, should they need it.