Rage.

Anger is a difficult emotion. Somewhere along the way, we’re taught that anger is “bad.” We learn to tamp it down or redirect it or just pretend it isn’t there at all. If we scream, we muffle it in charged conversations with friends and family. Maybe we fling our phone or smash a plate. But it’s quiet, polite anger.

Lately, I’m angry all the time.

Childhood cancer is awful. I look at Hazel, and I barely recognize my beautiful daughter. Her hair is almost all gone now, and what is left is just a soft fuzzy stubble at the edges of her scalp. She’s been on steroids again, and her belly is distended and her face round, even while her legs and arms are sticks.

But Hazel isn’t terminal. She has a cancer that is highly treatable, and she has had a textbook response to chemotherapy so far. She’s doing “great” by all metrics. So then I get angry at myself for not being grateful enough that she has an excellent chance of survival. (Excellent meaning that 3 to 5 children out of 100 will still die.) Who am I to complain when there are children with stage 4 cancers that will absolutely lead to a horrific, protracted death in hospice?

I’m angry, too, that so many people are starting to go back to normal. I understand that the time must come when society faces this threat by slowly going back to life. COVID is likely here to stay for some time, probably permanently endemic in our society. If I didn’t have an immunocompromised child, I would certainly be doing more (with significant caution like masks, distance, and frequent hand washing). But because of childhood cancer, we must stay in our shell. We must continue to isolate from the very people that would make this cancer nightmare bearable.

I’m angry at family who continues to gather and have meals and time together without us, while I stay here, cooped up in the same four walls day after day. It feels like we don’t exist anymore. We’ve become invisible. Because they are far away, they can trick themselves into thinking that everything is, after all, ok. It’s so unfair. But as I tell my children on a daily basis, whoever said that life would be fair? If life was fair, James would still be here, and Hazel wouldn’t be sick. It’s not my family’s fault. It’s not anyone’s fault. It just is.

And STILL. I AM SO ANGRY. I want to scream at the universe for giving my daughter this burden to carry. I want to scream out why us, again?

I’m tired of being told that I’m strong and resilient and all of the other things that people say. I am not strong. There is no alternative. If I break, to what end?

Every decision I make these days feels fraught with so much danger. Do we let the grandparents continue to come, knowing that they may bring COVID with them? If they do, and we are infected, will I forgive myself? Would Hazel survive? Not a single decision is easy. Everything feels like a question of life or death.

But isn’t this always parenting our children? When we come right down to it, our most basic instinct as parents is to protect our children. So few of us really understand how translucent, how terribly thin, that veil between life and death is. We think we have some control, that if we’re just vigilant enough, nothing bad can happen. It’s not true. Control is an illusion, and the veil is so terribly thin.

Two nights ago, I woke up crying in my sleep. It seems that sleep is the only place my grief and fear and sorrow come out now. My thoughts were tangled and nightmarish. I saw James, as we held him and let him die, then I saw Hazel, intubated, a ventilator breathing for her, swollen and pale and dying.

Then I envisioned life as I’ve been living it since December 2, 2019. There is a massive granite boulder suspended above me. It is lowered by a tiny increment each day, so that only a tiny bit more weight is put onto me. But it is painstakingly crushing me into the dust. Every day, it lowers another micrometer, and I sink with it.

I cannot live through losing another child. I simply cannot.

3 to 5 children out of 100 with Hazel’s condition will still die.

21 months of treatment to go.