A year in the life

Susan TOM laid down some ground rules when she allowed filmmaker Jonathan Karsh and his crew to spend a year with her and her 11 adopted special-needs children to make the documentary “My Flesh and Blood.”

“No butt shots,” says Tom. “I wasn’t going to do a bedroom shot -- though one did get in there.” She admits she did allow the crew in her bedroom after the death of her 15-year-old son, Joe, because, she says matter-of-factly, “I couldn’t stand up any more. Karsh and his crew of two also had to give the children, who then ranged in age from 8 to 19, their personal space.”

But most important, they had to share a secret about themselves with Tom. “That is the only way to even the playing field,” she says. “I am sharing my life and my thoughts -- if you ever want cheap therapy do a documentary -- and if I am being honest about all of my feelings they should be honest with me. If I have to trust them, then they are going to have to trust me. The only way I could figure out to do that was to say anybody who works on this has to tell me a secret that they and perhaps one other person knows.”

Opening Friday for a one-week engagement at the Nuart, “My Flesh and Blood” is a remarkably unsentimental cinema verite look at the lives of Tom and her brood, who live in a sprawling house in Fairfield in Northern California. Though the family lives on limited assistance from the state, Tom manages to take care of children who have conditions ranging from no legs to a genetic skin disease to cystic fibrosis. A loving mom, Tom also is strict with her children. And despite their disabilities, the children seem to thrive under her care. The film, though, catches Tom during a difficult year

Her 18-year-old daughter, Margaret, epileptic as a child, is the one Tom relies on to help her with the more needy children. But she’s at the breaking point; besides working almost around the clock as a caregiver at home, Margaret also is a part-time grocery store clerk and attends community college

Faith, now 10 and the youngest, was severely burned at 4 months of age in a crib fire. She lost her right hand and has sores on her head that won’t heal. Though she’s highly intelligent, Faith is continually ridiculed in class and defends herself by hurting other students. Tom has to decide if Faith needs to be home-schooled.

But her greatest heartache is the rage-filled Joe, who had cystic fibrosis. At one point in the film, Joe threatens not only to kill one of his siblings, he even confronts the film crew.

“My Flesh and Blood,” which is from Strand Releasing/HBO-Cinemax Documentary Films, won the Documentary Directing Award and the Documentary Audience Award in January at the Sundance Film Festival. It’s scheduled to air on HBO next Mother’s Day.

Director Karsh says his biggest fear is people will think because of the subject matter that “My Flesh and Blood” is depressing or sappy. “I didn’t make a film to be depressing. I didn’t make a film to turn you off. People who do see it say that they feel like they have spent a year with this extraordinary family.”

Tom is the reason why “My Flesh and Blood” doesn’t fall into a tub of bathos. “If Susan wasn’t who she was, the film wouldn’t be what it is,” says producer Jennifer Chaiken. “I am not so sure we would have done a film. Susan is not this saintly Mother Teresa. She is a complex, complicated character.”

“My Flesh and Blood” marks the directorial debut of Karsh, who was a host of a popular Bay Area TV entertainment show, “Evening Magazine.” “I met this family one day at a trapeze school, and I walked away wanting to just go back and see them again. I loved documentaries so much, and I always wanted to go into a story more creatively than three or five minutes apiece. I wanted to make documentary films, and this was it. I couldn’t believe the Toms hadn’t had a film done about them, and they were so ready for it.”

Karsh and his two-person crew began filming when Tom took nine of the children across the country in an RV for six weeks on vacation. “None of that footage ended up in the film. When we got back is when the story unfolded.”

Tom gave birth to two sons in the 1970s, early in her marriage. But she wanted a daughter. So she and her husband adopted two special-needs children, Emily and Margaret. The strain of the additional children couldn’t save an already shaky marriage. But after her divorce Tom couldn’t stop adopting children.

The eldest of the children is now 21-year-old Anthony, who was born with a rare degenerative skin disease, epidermolysis bullosa, and now suffers from cancer. Tom had another adopted child, Susie, who died of the disease.

“Anthony is hanging in there and I don’t know why,” Tom says quietly. “The cancer continues and he continues.”

Though Tom received standing ovations after the screenings at Sundance, Karsh reports that the audience always questioned her about her rather chilly relationship with her own well-coiffed mother, whom she hadn’t seen in six years, and her callous treatment of a weeping Margaret in one scene.

Tom says she understands why audiences ask those questions. “I can’t change any of the relationships or anything that I have done. We all play the game ‘If only I had.’ But you didn’t and now you live with it, adjust to it and move on.”

In April, Tom welcomed another child, 17, into the fold. “There was a young lady who lived in a group home very near us who came over and asked me to adopt her,” says Tom. “I had said I wouldn’t take any other kids unless they dropped on the doorstep -- and she did. I questioned the kids -- ‘Did you tell her to come over?’ They said, ‘No, no, no.’ ”

Tom hopes that “My Flesh and Blood” will inspire people to adopt, foster or mentor special-needs children. “We all had great intentions,” she says, “at least my generation did.”

Susan King can be contacted at susan.king@latimes.com.