People | Family | Parenting

When We Knew Our Boy Was Slipping Away

We were so worried about surviving that we’d forgotten to show him even little ways to live.

Everett had a week left to live, and yet we’d rarely felt so hewn to hope, as if our denial of his looming death were a drug coursing grand mirages in guise of a miracle. His phase-one trial at St. Jude Children’s Research Hospital in Memphis had been approved earlier that day, and Rett beamed as we filmed him rollicking in his activity center, from where, we were fond of saying, he controlled the whole of our universe. “We’re gonna move to Tennessee for a while,” Deana exclaimed, Rett’s attention now upon a stray orange block. “Exciting, right?”