One April evening, when I came home from teaching, the refrigerator door was wide open, and my husband was sitting at his desk staring at the pen in his hand.
My husband, who spoke six languages and was so meticulous that I called him Dr. Footnote, said very slowly, “I know what this does, but I don’t know the name for it.”
When we learned that Willem had glioblastoma, the worst kind of brain cancer, I immediately called our pediatrician. “I was just told my husband is going to die. My son is three-and-a-half years old. I don’t know how to tell him—what words to use.”
“Call Sallie Sanborn,” he said. “I worked with her at Bellevue. She knows this stuff.”
The next wild year, Sallie guided us through a new chapter of our lives, a simple one of a family being tapped by the Grim Reaper.
Sallie said, “One: name the disease. Tell the truth about the prognosis. Two: reassure the children that they didn’t cause it. Three: tell them everything the doctors are doing to help. Four: don’t hide anything.
After growing up on the wisdom “Don’t tell the children” when anything bad happened, I now believe in the importance of telling them.
One day, early in Willem’s treatment, a cheerful visiting nurse named Glenn arrived at the house just as I was trying to get our son, Jake, to bed. When Glenn took out a syringe, I held up my hand to stop him, and practically threw Jake into his bedroom so that he wouldn’t see what Glenn was doing.
The next night when Glenn arrived, he said, “This time I suggest another way.” “Come,” he said to Jake, and Jake took his hand. Jake stood right next to his dad, patting the big scar on his head. Glenn steered Jake’s little hand, and they gave the injection together.
My son grew up too quickly. Everybody who loses a parent says that happens, but Sallie helped us find the words to describe that “losing.” Not that she took away the pain, but she helped us learn the words to say what it was. And I learned from Glenn how hiding the truth was more upsetting than seeing what was going on.
My son is now nine years old. This year when a dear friend was diagnosed with brain cancer, Jake said to me, “You can talk to the mom. I’ll handle the kid.” Jake didn’t skip a beat. This was something he knew how to do, just like he’d help tie a younger child’s shoe.
Last night we were dancing in the kitchen to the Beach Boys while I made dinner. The phone rang and Jake answered it. “No,” I heard him say, “No he’s not, he died. But my mom and I are here.” It took me a second to realize he was talking to a telemarketer.
We’re on a strange journey, my son and I, but it’s one we all are on. And I believe, now more than ever, in the importance of being honest with children.