This was how Fiona found out the name of her disease. It happened sometime this past year - after Christmas but before the snow was gone. Fiona and Simon were sitting in the den (what we call the telly-room, for obvious reasons) and Tim and I were in the kitchen. It was a Friday night because the kids were watching a movie and Tim and I were opening a bottle of wine and standing in the kitchen chatting as we poured out the first glasses.  It is possible it was a Thursday (because Thursday is the new Friday) or a really bad Wednesday. Either way, Tim and I had said fuck it, and were having a drink and letting the kids rot in front of a movie.

Simon and Fiona chose Guardians of the Galaxy. Simon and I had seen it together in the theatre and we both loved it and he was excited to watch it with his sister. For those that have seen the movie, you'll recall the opening scene but just in case you haven't seen it (and you should) I will set the scene: A hospital room with a beautiful, young woman, bald and weak in a hospital bed, tonnes of family around her, including a little boy. A quintessential Hollywood scene that semi-romanticizes death at the hands of this disease and makes it seem a lot less gory and awful than it really is, but I digress. With that scene playing out, we hear from the telly room:

Fiona: That lady is baldy Remember when I was baldy?

Simon: Yeah.

Fiona: Is she sick? What's wrong with her?

Simon: She has cancer. She's dying.

<silence>

Simon: You had cancer! You almost died! You're super lucky to be alive.

Fiona: Oh. Okay.

And that was it. It was labelled and then everyone just moved on.

Tim and I had always felt that we should answer our kids questions when they asked them - on any topic - honestly and with just enough information to answer that question. Providing any additional information can spawn additional questions, and that is just a rookie mistake. We followed this rule pretty well - including Simon's "Hey Mum. How's that baby gonna get out of your belly?" - until about 4 moths before Fiona got sick.

We had promised to always tell our kids the truth. Making promises is pretty easy; Keeping promises is harder.

At school, Simon had started learning all about the life-cycle and the difference between living things and non-living things. All of these meant he was starting to have a concept of death and was asking me some tough questions. He was asking things like: Will I die? Will you die? What happens when you die? Does it hurt to die? What happens after you die? I found this challenging even before all this shit because I have my own anxieties and fears around death - specifically my own - and after 5 days of non-stop, body blow questions on this topic I, in a moment of weakness, blurted out "You know what buddy? Don't worry about it. Kids don't die!"

Boom. Problem solved. #ParentingWin Until...

Less than 3 months later Fiona goes and gets cancer and all of a sudden I am face-to-face with my then practical but now very, very obvious lie.

Fuck.

All of a sudden the truth seemed like a lot more than I could bear. I didn't have to deal with it with Fiona - she was just a baby and, as far as she was concerned, moving into the hospital for 6 months is what happens to everyone at 15months old. She didn't know any different. She knew when she felt sick but she had no concept of how sick she was, what she was sick with or what might happen. Even at 3 years old when she relapsed, she never really went there. 

Simon, on the other hand, had a lot of questions. Tough questions. Way tougher than the original non-specific questions he was throwing at me. And somehow, because it was his sister and because it was very, very real I did better with these real, versus hypothetical, questions. Despite my desperate desire to weave a web of lies that would put a sociopath to shame, I did not. And when he asked me - while brushing his teeth in the family bathroom one night during her original treatment "Is Fiona going to die?" I answered him honestly and said "I hope not. Everyone is working really hard so that doesn't happen." Never one to let me off too lightly - a man after the facts - he said "But she could?" and I simply said "Yes"

He is an old soul my Simon and he took it on board quietly. He finished brushing his teeth and then turned his body to me, his eyes welling, and said "I don’t want her to die Mum" and I said "Me neither buddy" I somehow managed to keep my shit together and put him to bed and then, in a very fast-follow, put myself to bed and sobbed into my pillow. I sobbed because I said what I feared most, I sobbed because it felt like a part of his childhood was over, I sobbed because I had just made a big parenting call and I was alone and tired and scared.

It feels like a long time ago - that night in the bathroom with my 5 year old boy - but I can tell you how many times I felt my heart beat and the smell of the sickly sweet toothpaste he was using. I can tell you that I remember him seeming older in that moment where he had to contemplate that his sister might not be coming home. Ever. I can tell you that I could taste my own tears as a I held my breath and wondered whether, even best case scenario, he could survive this without scars and damage or baggage and resentment.

Fiona was too young to ask these tough questions and, even when she relapsed, she was always focused on the moments and the near term. Her questions were about whether the poke was going to hurt and whether she would be asleep for that test or procedure. She thrived on knowledge and planning and coped by having things patiently and repeatedly explained to her - how dressing changes were going to happen, who was going to be in the room doing what and what equipment was for. She asked for and took control where she could and she never ever asked me about tomorrow in the bigger sense. She never asked if she was going to die. She never worried about the what if or the maybe scenario.

At initial diagnosis and throughout her relapse, we had to have some difficult conversations. We had to endure conversations with people who told us everything was going to be okay. We had to help people around us understand that the relapse itself was pretty fucking bad and numbers and survival rate percentages were out the window. We had to tell people to plan their wedding with Fiona in it, but to have a back up plan too. We had to talk to ourselves and each other about every parent's worst night mare. We went in our heads, we held on to fears and wondered always about what might be while the children around us dealt in facts, focused on the moment and spoke the fear and the feelings we felt out loud.

Now I try, every day, to follow that example. To do that. To speak my fear and feelings and be in the present and let go of the worry of what might come. It's hard, but I want to keep working on it because I think everything would be better if I worried less about what might be and focused more on what is. A friend at lunch recounted this story from a recent random encounter with our kids at a splash-pad. Her daughter and Fiona are of a similar age and while the grown-ups are chatting, this exchange goes down:

Quinn: Did you have cancer?

Fiona: Yeah. But I took some pills… and slept a lot. I'm fine now.

Quinn: How old are you? What grade are you going into?

As a family, we didn't talk about cancer in front of Fiona or Simon for that matter. We said Fiona was 'sick' and everyone just understood. Cancer was Voldemort and there was this unspoken agreement that we wouldn't name it. But that was the grown-ups decisions - and we are not exactly the best cohort of society when you look at it. If you really want to know what's going on, some candid feedback on a program or an idea or an outfit you have on, ask a bunch of kids. But bring some towels with you to wipe up after cause it'll be a fucking blood bath. I am learning to appreciate that candour and I love that kids say what they think. They ask questions without judgement from a place of curiosity and interest. They have no time for sensitivities or implied social norms. They accept facts and they don't posit possibilities. 

That 5 year old boy is now 9. He has had help to get through to these last few years but he has also helped me in a lot of ways. We talk about what we fear and hope and dread. Fiona had cancer, but she doesn't anymore.