A Dramatic Life with a Down Syndrome Daughter

Varda Ben-Hur is a big  woman with a big personality  — enough to fill a home, a  stage, a book or two. A chubby  little girl in Israel’s thin austerity  years; a too-round teenager;  an outrageously zaftig  young woman who thought  marriage and motherhood  would make it all right.

Varda Ben-Hur is an  actress, an author, a divorced  mother of two. She defines  herself with the words of Reb  Nachman of Bratslav: “There’s  nothing more whole than a  heart that’s broken.” Her mother was a sabra, her father a Holocaust  survivor from Poland. “You’re a number (hevramanit),” he’d  say, “like me — a partizaner, a fighter.” Her fighting spirit stood her  in good stead as she battled her way through her unhappy childhood  and teen years, through her short marriage and the birth of  two daughters, the first with Down Syndrome.

“I left my baby in the hospital for a month,” Varda says sadly  about her elder child. It was guilt, not love, that finally convinced  her to bring little Netta home and raise her. And a sense of obligation:  “I decided it would be very hard to bring her up, but it would  be even harder to desert her.” Life was a constant struggle, fighting  with teachers, with the medical system, even with the army when  Netta eventually tried to volunteer for a special unit.

And being the parent of a child with Down Syndrome hardly  transformed Varda Ben-Hur into her fantasy, the perfect mother  with the perfect life. “I acted the part,” she says ruefully, “but I was  ashamed of Netta and felt like I was still damaged goods myself,  not normal.” She moved to Jerusalem where the medical experts  were concentrated, followed their advice, and says she learned to  love her daughter from the baby’s Moroccan grandmother.

When Netta was five, Varda decided to try to have a “normal”  child, praying every day for a kid who’d be easy, simple, “like everyone  else.” Her miracle finally happened: she gave birth to a healthy daughter  named Or (light). Life, however, was not yet perfect. “With all my  ‘feminism’ and assertiveness,” Varda remembers, “on the ground I did  whatever my husband wanted.” They divorced when Or was two, and  Varda learned the hierarchy of single motherhood in Israel.

“There are different degrees of single mothers,” she explains. “ If  you’re a welfare mother, you don’t get much respect. If you’re a selfsupporting  professional mom and your kids are okay, then you’re higher  up the ladder; people remind you to take care of yourself. And if you take  care of your own ‘special’ kids, that’s another whole level: you become  sanctified, and you’re always working to preserve your sainthood.”

Through it all, it was acting, spiced with her acerbic wit, that kept  Varda going, a survival mechanism from childhood. An alert teacher  had suggested she join an experimental youth troupe, and for the next five years she studied and performed street theater — Brecht,  Shakespeare, things that were barely known in Israel at the time.

She’d also gained more weight by the time she graduated from  her religious high school. Her father had fought the Nazis, and at 18  she was desperate to join the Israeli army, but even more desperate  at the thought that Zahal wouldn’t be able to find a uniform big  enough for her. So, ignoring her family’s shame and disappointment,  she got an exemption from the army and went straight into  the peace movement via the “Gypsies,” a troupe of creative young  Arab and Jewish actors who performed in kibbutzim, Arab villages,  and towns and cities throughout the country.

Marriage and childbirth almost ended her budding career, but  divorce sent her back to work with a vengeance. She taught drama  to schoolchildren, then adults. She acted on television and on  stage, and found, with amazement, that she was living better than  she had before her divorce. For the first time in her life, Varda Ben-  Hur began reaping respect, the singularly Israeli respect for a successful  single mother. And three years ago she entered a competition  for literature for retarded adults; her book On Love, with Netta  as its heroine, was published. “Being Netta’s mother is an open  wound — but I also know today that she has been my teacher,”  Varda says. “She’s amazing in her insights, and I’m proud of her.”

With humor and whimsy, Varda has put her heavy life on stage  in “Are You Happy Yet?” a short Hebrew play. Three young men back  her up musically and dramatically, romancing her and the audience  with flamenco, blues, klezmer, and almost everything in between.  Varda takes the thin world to task and laughs at herself, a fat  54-year-old, who’s finally where she wants to be, or almost. “When  you’re young and fat, it’s a nightmare to walk down the street. At  my age, no one expects you to look any other way.”

Is she happy yet? “I’m not whole, not perfect,” she declares,  returning to Reb Nachman, “but I’m ready to start living. To sit  comfortably in my chair, and if the chair isn’t comfortable, to ask  for a different one.”