Our little girl started school this week, which prompted many questions: What should we tell the teacher about my condition? Who needs to know about it, and what do they need to know?
But if you pose such questions, it isn’t long before the conversation spirals into something deeper and much more fundamental.
How much do we want our children to know?
After all, nothing might happen for 10 years. I could be relatively healthy for a decade, in which case why burden our children (aged two and four) with something they don’t need to worry about?
By the time a decade has passed, maybe they’ll be old enough to understand and prepare for what will happen to the family. At least relatively speaking.
But doesn’t that mean keeping a terrible secret for 10 years, and then having to spring it on them? Oh, by the way, there’s something we haven’t told you all this time, but now we’ve kind of got to, and it’s not good news…
It would be even worse if my death was sudden and unexpected.
Surely it would add to their distress to learn we’d kept something so serious from them for so long. That we’d hoped to spare them confusion might not come as much consolation.
But they’re both too young right now to even properly understand what death is.
They hear the word and we talk on walks or at the zoo about animals and even humans dying. But the connection between those ideas and the fact that Daddy just won’t be around anymore is surely too much to get their little heads around.
Children are incredibly perceptive. There’s no doubt our two know there’s something going on. They know I have frequent hospital appointments and trips to the doctors, they’ve heard the words cancer and brain tumour around the house, they know I have to take medicine. They’ve seen and comforted us as we’ve dealt with the distress ourselves.
I’ve even tried to train my daughter about what to do if I have a seizure. (Tell someone close to look at my wristband.)
I guess they just don’t know that these things aren’t the same things that every family does. Like if you have same sex parents, you don’t realise it’s unusual until you start going for tea at other people’s houses.
So we have decided the best way to let our children learn about my condition is through osmosis.
By just being a family. We share things as a family, and we won’t hide away my illness like it’s a dirty secret that has nothing to do with them.
It has everything to do with them.
It is as much a part of our lives as the idea that Daddy goes cycling a lot, Mummy goes running a lot, and Granddad likes horse racing and drinking beer.
We’ll allow them to hear and learn about my illness as we go along. We won’t hide it, and we’ll fill in the gaps and answer questions as truthfully and fully as we can, as they arise.
If we don’t let them gradually come to understand, I’m pretty sure they’ll learn about it more suddenly from someone else. Accidentally at school, perhaps, a misplaced or misjudged intervention from a friend or family member.
This way we get to provide reassurance when it’s needed, without piling on information that might cause distress when it doesn’t need to.
The approach we’re taking might not be to everyone’s taste, but it feels right.
My tumour and my decline are going to be an integral part of our lives from now on, whether we like it or not. Rather than avoid the issue, we want to embrace it.
I hope our children grow up to understand why we thought this was the best way.
Though we know from talking to others that my decline and death will affect their whole lives, whatever age they are when it happens, I hope our decision does lessen their pain in the long-run.
What parent could hope for anything else?