It's the moment that every cancer survivor with young children dreads. I had just put my exhausted kids down for the night and sat down in the office to check email. A few minutes later, I heard a door creak open and I shouted, "Go back to bed, Augie!" But he was asleep. My daughter was crying, saying, I'm scared! I told her to come in and tell me what was wrong. She said through her tears:
Mommy, I don't want you to die.
My heart caught in my throat. She has never said this to me before, not when I was going through cancer treatment, not ever. I know she has thought about it, but she's never said it out loud. Here is the conversation that ensued:
K: What? Why are you worried about that? I'm not going to die, at least hopefully not for a long time. Everyone dies eventually, but we hope we have a good long life first. Why are you worried?
L: (sobbing): I don't know.
K: Well, is it because I had cancer?
L: I don't know.
K: Honey, I'm not dying.
L: I don't know I just worry because the gym teacher said that if your heart rate gets up too high, like when you exercise, you could die, you could just collapse and die and that happened to someone he knows!
K: (pissed that the teacher would talk to first graders about this): Well, yeah, I suppose that's true, but that would only happen if something is wrong with your heart. And nothing is wrong with my heart.
L: How do you know?
K: Because I know. Remember when I did chemo? They gave me a test, called a MUGA, to check my heart function. They don't let you do that kind of chemo if you have a weak heart. They told me my heart was perfect. I saw the test result. And then, when my heart was acting weird due to chemo--remember that? (she nods) Well, my heart was beating like 130 times a minute when I was lying down! And I was fine. If your heart is beating too fast, your body knows to stop, unless your heart is sick. But even then you don't necessarily die. Remember my cousin J? (she shakes her head). Oh, ok, well, anyway, when he was born his skin was blue. They needed a helicopter to fly him to a hospital and do emergency surgery on his heart. They thought he wouldn't live through that. Then they thought he wouldn't live through the week, through the year, and on and on. I was your age when he was born. Do you know how old he is now?
L: (doing mental math): 30 or 31?
K: That's right. A lot of bad things can happen to people and they don't die. And sometimes people die without anyone knowing it could happen, and that's sad, but it doesn't happen that often. We all have to die, but not for a while. I mean, I could live to be even older than twice the age I am now!
L: And when you're twice your age I'll be like 40.
K: 44, kiddo. So we all need to try to take care of ourselves, like eating right and exercising and SLEEPING, and adults shouldn't make you worry about stuff you can't control. He should be telling you about how to be healthy because it will make you feel better, not because you will be worried about people dying! Now do you want me to tuck you in?
L: OK (not crying anymore).
K: I love you. It's too late to read. Go to sleep.
L: OK. I love you too.
And when the moment came, somehow you knew that the way to ease her mind and make her feel better was not to act as if disease wasn't real, but to acknowledge that it is, and yet people can still survive. You knew, somehow, that denying death or talking about it as if it wasn't imminent or permanent would not be a comfort, so rather than pretending that death wasn't coming, you hugged her and said that it is, but not yet, not tonight, not yet. And she slept like a baby until she woke early in the morning from the sun streaming through her window. She was the first to wake, and you were the second. You stopped into her room for only a moment to say that you were going to the gym. She didn't even look up as she said, ok mom, I'm not hungry yet, I'm just playing with my robots. She looked up at you for just a second, and you acknowledged each other, not as mother and daughter but as two people living impermanently and perfectly in the world, right now, on a sunny day in spring before anyone else had roused themselves from sleep.