Sometimes parents wait too long to tell their sick children that they will die. Sometimes, by the point of disclosure, their child can no longer speak.
“Give me one finger for cremation. Give me two fingers for burial,” Lauren Cosby will ask.
As one of two child life specialists in hospice at Dell Children’s hospital, Cosby asks other questions to be answered by fingers. Are you feeling scared? Are you in pain? Are you worried about your family?
She said often the dying child will become an “emotional caretaker” in the hospital room where they’ve just learned that their illness will kill them. “Even though it’s happening to them, they tend to really want to protect their family.”
It doesn’t have to be that way. Cosby says a lot of the job is beautiful, even fun. Families make memories, and child life specialists help make it happen. They go to see the ocean. They throw private proms and graduation ceremonies. They finger paint. They crack jokes. They decide to make the most of precious little time.
“Grief is the price of love, and there’s so much love in there,” says Heather Eppelheimer, another Dell Children’s child life specialist. “We have to be able to love fully in order to also grieve fully.”
Child life specialists respect family wishes and also advocate for honest, clear language about death. They say to use that word – death, dying, die – and avoid “passing away” (“To where?” Cosby asks).
That kind of straightforward communication isn’t part of our cultural hardwiring, Cosby says, but it makes everything easier. In her life, when people aren’t comfortable talking about death, she asks why. What are they afraid of?
Eppelheimer does the same, “sprinkling seeds” everywhere she goes. On a family vacation, Eppelheimer says she made her relatives sign medical power of attorney agreements and answer how they’d like their remains to be treated.
“Life is a terminal condition, right?” Eppelheimer says. “None of us get out of this alive. So why are we not talking about it?”
As Eppelheimer explains, accepting that death is coming isn’t just about planning, but connecting. Cosby and Eppelheimer will continue working with families for 13 months after the death of a child to smooth the transition, and they say joy amid death is more common in families that chose to be honest from the start. “Kids know that their body is shutting down,” Eppelheimer says. “Kids are understanding these things, and you’re sending them into a dark corner to deal with it all by themselves. As a parent, when you come into that closet and turn on the light, then you can comfort them.”
She thinks of a teen patient whose parents never hid anything, whose family went on adventures, whose heartbeat was recorded and now plays on speakers in dozens of stuffed animals gifted to young family members. That patient had a mantra, sometimes spoken through tears: I’ve lived a really good life.
This article appears in October 11 • 2024.