After last Tuesday’s Oprah show, I received a flood of emails from friends and readers. The episode detailed the challenges and hardships faced by a Los Angeles family raising a 7-year-old daughter with severe schizophrenia. Their story first appeared in the LA Times this summer. Jani Schofield is a child who lives half in our world and half in her own, where dozens of animals and people compete for her time and attention—animals and people only she can see.
When I read the article online in July, I immediately emailed the link to my husband. “I’m not saying anything,” I wrote. “Just read it and tell me what you think.”
He emailed back within twenty minutes. “That was chilling,” was all he said.
To hear about a seven-year-old schizophrenic is troubling for any parent. It was especially so for us. As Jani’s parents revealed, their daughter’s hallucinations started at age two, when she began speaking of an elaborate posse of imaginary friends who goaded her into aggression. At first, they thought she had an overactive imagination. But then they became concerned that her behavior was taking an atypical turn.
As most of you know, our daughter also had series of “friends” at that age. This alone was not a problem. I had an imaginary companion as a child; my sister did, too. Ours came and went freely, and appeared completely benign. My daughter, on the other hand, talked about one of her “friends” constantly, in a manner more articulate and detailed than one might expect a two-year-old could manage. She described with utter conviction the island where he lived, a whole world she claimed she could see. As the months progressed, my husband and I became more than a little concerned.
Creativity or delusion? We couldn’t tell.
“It’s a normal developmental phase,” the pediatrician assured us. “She’ll grow out of it,” the therapist with whom we consulted said. When my daughter's behavior became mildly aggressive and she attributed her actions to her “friend,” we were told this, too, was within the normal range. But we were the ones who’d witnessed our daughter’s development every day since her birth. We felt that something else was going on, that the rote explanations we were given somehow weren't adding up.
Our quest to help our daughter eventually brought us to Maya healers in the Central American country of Belize. The trip yielded inexplicable yet effective results--a wholly unexpected outcome for a self-professed cynic like me.
To say some readers have disagreed with the parenting choices I made puts it mildly. Some have labeled me over-reactive and overprotective. The more blunt ones have called me a total nutcase.
What can I say? I also questioned my judgment, my motives, and my sanity nine years ago, and again as I wrote the story down. What kind of mother, I wondered, alows her imagination to tumble into such extreme and dramatic territory? Why couldn’t I sit back and let the “friend” disappear on its own? And then I read about the Schofield’s plight, and it confirmed that labeling (and self-labeling) a mother as an over-reacter is nothing short of maternal censorship. Sometimes, a mother’s intuition is her most powerful tool.
I don’t believe my daughter had early schizophrenia. Such a condition is incredibly rare, affecting only one out of 10,000-30,000 children, depending on the study quoted. I still don’t know what she had, only that in Belize its most negative aspects went away.
It’s possible she had a little-known phenomenon called a “paracosm,” a child’s fantasy world populated by people and animals, with its own geography and language. The Bronte siblings are believed to have had one; W.H. Auden, too. (Think of Terabithia, and you’ve got the idea.) Some researchers say paracosms are markers for extreme creativity in adulthood. It’s as atypical as childhood schizophrenia, though in a very different way. But to a parent who doesn’t understand the distinction, they look very much the same.
As every parent knows, raising a child is a journey, a rollercoaster and, above all, a mystery. We begin with the best intentions, only to discover we don’t have total control. No matter how many books we read, experts we consult, or plans we make, there is an unquantifiable element at work here, an enigmatic, indescribable ingredient that determines whether a child grows up happy, grows up secure, grows up safe. Parenting is as much about ambiguity as it is about certainty, as much about intuition and wonder as it is about fact.
It’s a tenuous, miraculous task to shepherd a child safely into adulthood. Yet we all carry within us the gut-wrenching, unspeakable knowledge that despite our best intentions, things can still go horribly wrong. It’s not hard to read about a family like the Schofields, a good, loving family that wants the best for their daughter and is determined to provide it, and think: if not but for the grace of god goes my family, too.
Frankly, if not but for the grace of something unknowable and unseen that guides parents—call it whatever you will—go us all.
Causes Hope Edelman Supports
Motherless Daughters of Orange County
Belize Children's Food Fund
Doctors Without Borders