This Is Us
The Grief We Share When We Lose a Child to Cancer
What happens when the pediatric oncologist runs out of ideas
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We remember everything vividly — the appointments and phone calls, the bedside chats and furtive hallway conversations. We remember the look on the pediatric oncologists’ faces right before they told us what we never believed we’d hear.
We remember, as if it happened yesterday.
“I’m sorry. There’s nothing more we can do.”
We remember the handoff to palliative care, the last wishes, the goodbyes.
We remember picking out gravestones and urns, writing eulogies, and seeing their still faces for the last time.
No matter how many years pass and milestones our other children reach (or not), or how many gray hairs we’ve accumulated as we age and age and age — we remember.
We hold the burden of knowing that no one — not even us — could save our babies.
We try to cope, though coping is a hollow notion when you’ve buried your child.
We form foundations to help fund research and support the newly diagnosed. We connect in support groups and read books about parental grief. We turn our profile pictures gold each September even though it never helps.
It never helps.
There are too many kids dying from too many lethal questions with not enough funding to find the answers.
We’re still failing them.
We want to be understood, even though we know you can’t possibly understand. Understanding is the worst fate imaginable.
What will tomorrow look like? When will we recover?
We elevate the memories of our children because that’s all we have left. We share photos and videos and stories faded at the edges because we want you to know about them. We need you to know about them.
We keep tiny ornate boxes filled with precious baby teeth. We preserve the beloved stuffed toys they once slept with and baseball gloves and Barbie dolls.
We leave their rooms untouched or we redo them, turning them into guest rooms or offices or bedrooms for siblings. We weep as we give their things away or tuck them in boxes or throw them out, because how long can you hold onto the brush she once used before the chemo took all her hair away?
As the virus surges through our communities, we worry. What will tomorrow look like? When will we recover? Who will be the next person we love to get sick?
But we also worry about other things. Will we lose another child? Is the stress of this new trauma too much for our surviving children, who have already been through too much?
We worry about the ones still battling cancer because we know what it means to have an immunosuppressed child. We understand how awful it would be to leave them alone in the hospital. We know what an overcrowded ER is like in the middle of the night, and the awfulness of waiting for a bed to become available.
We wear our masks for them as much as for ourselves.
We watch the money tumbling from the coffers of state and local governments to fund a cure for this deadly pandemic and try not to feel bitter that our children didn’t warrant that kind of attention (or maybe that’s just my own grudge to bear).
We want our children to be more than dreams and memories, but as the years pass it’s difficult to hold onto their bright faces and the promise of their lives.
We walk along forested paths looking for stones. We nod knowingly at rainbows, as if our children are winking at us from some unknown place. We chase after signs desperately or lovingly or hopefully, needing to connect our love to something tangible — a stone, a feather, a sparkling bird.
Somehow we live, though it’s a hollower life, and try not to get caught up in the what-ifs.
We try to forgive ourselves so the darkness doesn’t own us.
What if we had caught the tumor sooner?
What if we had tried something different?
What if the doctor hadn’t said those damn words… there’s nothing…there’s nothing… we have nothing here to save your child.
Dwelling on the what-ifs wears down our marriages, our families, and our remaining children. It sweeps us into depression or addiction or anger. It’s a darkness that threatens to consume the pieces of us that remain. So we try to forgive the shortcomings of modern medicine.
We try to forgive ourselves so the darkness doesn’t own us. It’s what she would’ve wanted.
It’s what he would’ve wanted.
The pain lurks and threatens and, sometimes, it surges. We learn to ride it out, like surfers caught in a terrible storm.
We want to be okay again, but we live in the same house where she grew up. We work in the same room where she died.
Our driveway reminds us of the first years of her life. We’d sit for hours blowing bubbles and making chalk drawings. The roads we drive on tell the stories of her childhood — this way to her tiny elementary school. This way to her favorite park. This way to the mall where we would spend Sunday afternoons watching Pixar movies, drinking smoothies, and picking out toys, then clothes, then makeup.
Each year there is an emptiness we can’t describe, a void where our hearts meet nothing but the dreams we once had for her. And, my god, we can’t stop ourselves from wanting to die, from picturing it — the last breath in this half-existence without her and then… nothing? Or no, a hoped-for reunion, a cup of warm tea shared in a place full of light and souls and eternity.
It’s selfish of us to envy death when everyone else is fighting for life. It’s selfish because she would’ve given everything to live and because we have another child and because we’re supposed to be strong, but we just want to see her again.
I just want to see her again.
How can that be too much to ask?
We tell each other the stories of our sorrow but also of our joy. We plant trees and arrange altars. We visit their graves and leave flowers or stones or folded cranes at their favorite places.
We learn to carry the emptiness, when it comes, then put it in a bubble and watch it float away.
We remind ourselves that each small joy is a triumph, each year lived a monumental feat of strength.
We stop trying to figure out why we lost them. Each September, when a golden light shines briefly on families like ours, we donate what we can. We light candles for our children, and we get a little more comfortable in this place of sorrow.
