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Welcome to the Tom household, where conflicts, never far from the surface, can erupt at any time. Explaining her decision to establish such a large brood, Susan Tom says, "If you can raise five kids, then it's not that far to go with six, and once you get to six, after that the noise level doesn't increase, and you're cooking big anyway. From six to 12 to 13 kids is not that big of a leap."
First-time director Jonathan Karsh left his job at a local TV station to film the Tom family in suburban Fairfield, between San Francisco and Sacramento, over the course of 12 months. Acknowledging that the children's disabilities can initially seem shocking and even hard to watch, he notes, "The first time you see the family you try not to stare. Five minutes later you realize that these are just kids with an amazing amount of confidence, spirit and energy."
The Tom kids openly and naturally deal with challenges and everyday events, from holidays to hospital visits, baths to birthdays, displaying a perseverance that dispels preconceived notions about the limitations of physical challenges.
The family revolves around a kind-hearted, no-nonsense divorced single mother whose birth children left the nest years ago. Her job requires the patience of a saint and the fortitude of a marathon runner, but the rewards are immeasurable, if sometimes heartbreaking. Although Susan Tom expresses desire for a romantic relationship, her family life is so all-consuming that she has not had a date in more than 20 years. She likens the documentary, drawn from more than 160 hours of footage, to "a year of therapy."
MY FLESH AND BLOOD opens with an uproarious Halloween celebration that refutes the stereotype of disabled children as victims, and ends as the family celebrates an unlikely birthday while confronting an enormous loss. Along with Susan Tom, the documentary focuses on five of her children, including:
Joe, 15, who struggles with both cystic fibrosis, a genetic disorder that traps mucus in the lungs, and bipolar disorder. Born to a drug-addicted mother, he must confront psychological challenges and chemical imbalances, at times terrorizing his family, but at other times displaying a tenderer side.
Anthony, 19, who suffers from the painful and degenerative genetic skin disorder epidermolysis bullosa (EB). The gene that produces collagen is defective in EB patients, causing the skin to blister and fall off with the slightest touch. Despite his debilitating physical condition and constant pain, Anthony is an uncomplaining, easygoing teen who loves life and performs in school plays.
Xenia, 13, a well-adjusted, athletic, boy-crazy burst of youthful energy - despite being born without legs.
Faith, 8, who was critically burned by her birth parents in a crib fire as an infant, and is a fiercely intelligent young girl, one of the top students in her class. Despite being severely disfigured, Faith remains optimistic, observing, "When I'm older and I'm grown up, I'll look like a regular person."
Margaret, 18, who survived childhood epilepsy and is now "second-in-command" in the Tom household. Overwhelmed by her role as her siblings' caregiver, she is now at a crossroads in life, torn between responsibilities at home and the desire to get an education and move out on her own.
MY FLESH AND BLOOD is Chaiken Films production in association with HBO/CINEMAX Documentary Films; directed by Jonathan Karsh; produced by Jennifer Chaiken; edited by Eli Olson; photography by Amanda Micheli; original music by Hector H. Pérez and B. Quincy Griffin; production sound by Craig Burton. For HBO: senior producer, Lisa Heller; executive producer, Sheila Nevins.
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