A while ago I saw a comment on a childhood cancer related website and it has been on my mind..

“The reason our child survived is not that we are good people, but because he has survived, we need to be good people.” 

When I read this I felt “yes, this is true,” and I do see this feeling reflected in the actions and interests of many other parents. They volunteer for the charities who supported them, they reach out to other parents, they throw themselves back into “normal” life with a determination to wring the most joy they can out of it.

But what we see on the surface is not always the whole story. A facebook friend of mine whose child is in remission recently posted about struggling with happiness, feeling that they “should” be happy all of the time, feeling overwhelming fear of relapse and guilt of not being joyful in every moment. It got me thinking about this again.

It seems to be human nature to look for meaning in our experiences, especially positive meaning in negative, stressful experiences. For those whose children have survived or are in remission, that can mean having high expectations of themselves. We think we must be happy all of the time, grateful for what we have in every moment, kinder, more thoughtful than everybody else, than we were before.

Sometimes those expectations come from outside us too. When we are tired and stressed and dealing with a tantrum from a tired toddler or squabbling siblings or just venting about the usual frustrations of life, well meaning people remind us, “But look at what you’ve got. your child survived, you should be grateful.” And of course we are, but maybe not in that exact moment. Nobody is a good person or happy or grateful 100% of the time, we wouldn’t be human if were.

But are we fundamentally changed by our experience, or do our basic personality traits become more exaggerated? How much do we change and how much of how we cope or react is a consequence of our basic psychological make up?

And if we do change, maybe the change is not always positive. After all, we have seen our children suffer for no apparent reason. Some of the effects on them, physical, psychological and emotional, will last a lifetime. We have ourselves been traumatised by what they have been through. What meaning should we take from that? The experience could just as easily lead to a paralysing fear of the randomness of life rather than to thankfulness.

And this is just those whose child survives. What about those who lose a child? What are their questions and where do they find meaning and happiness?

I definitely don’t have all the answers, but wanted to share with you some of my questions and thoughts.

I began this post before Zoe relapsed. My path has turned again and I am on a different journey, one I am sure all parents of children with cancer have thought about. Knowing that path exists is the source of many of our complicated feelings about the present and the future.

photo credit: Stitcher Scribbler via photopin cc