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November 2004
With a Family Like Mine
The Satya Interview with Susan Tom

 

Susan Tom
Film Review: My Flesh and Blood
Directed by Jonathan Karsh

Twelve years ago, Susan Tom was bringing her adopted daughters Hannah and Xenia (then 2 1/2 and 5, respectively) into the country from Russia. As they were checking through security, the guard dutifully searching their strollers suddenly recoiled in horror. “Oh, my God!” he shouted. “They don’t have any legs!” “Oh rats,” Tom replied in as close to a bored monotone as she could muster. “I must have left them on the plane again.”San Francisco Chronicle (11/25/03)

I knew it would be a hard watch, a real tearjerker. I also knew it would leave me feeling inspired and one step closer to my own personal goal of eventually adopting a special needs child. But what I didn’t know, what I wasn’t prepared for, was this family’s ability to put themselves, obliviously, into my heart. My unanticipated foray into their lives began with the compelling intimacy I felt with Susan Tom, this heroine. Mother with tremendous heart and conviction; and the kids, they’re even more impressive. My Flesh and Bloodis a powerful portrait of one year in this family’s life.

Susan would probably be the first to admit she isn’t a saint. She is far from wealthy. Her husband walked out shortly after the second child was adopted. But somehow—with no steady income or savings, but with tremendous love, compassion, and dedication—Susan provides a home and family for children who are so physically, emotionally or mentally handicapped, whose biological parents can’t or won’t care for them.

Susan, adopted mother of 11 special-needs children and birth mother of two, never planned her current life this way, as she describes on the film’s website: “I think when I found I could survive raising four kids, it was not that great a leap to get another one. And once I’d proven that I could make it with five, well, it seemed perfectly reasonable to keep on adopting.”

Susan has spent over two decades creating a family founded on the idea that, given the proper support and encouragement, every child can fulfill their potential. Encouraged by Susan to feel a sense of self-acceptance, most of the children thrive despite their disabilities: beautiful Xenia and Hannah are legless but have an abundance of energy, Faith whose face is still covered with the scars of a crib fire, Anthony, who is battling a fatal skin disease, and Joe, who struggles in the movie with both bipolar disorder and cystic fibrosis. Life is normal—sort of—in the Tom household. There’s a lot of laundry, a lot of groceries, and a few family parties.

In the documentary, we cheer at Susan’s ability to keep her house, cringe at the bleach baths given three times a week to son Anthony, whose skin falls off at the slightest touch, and yes, identify with usual sibling bickering found in almost any household with teenage kids.

But there are times when Susan’s limits are tested: when her daughter, Margaret, who is Susan’s chief assistant in caring for the other kids and frequent hospital stays, seems on the verge of cracking; when her fifteen year-old Joe, who suffers from cystic fibrosis, diabetes, attention-deficit disorder, and emotional issues, threatens his family—we simply wait with trepidation.

From teenage romances and summer pool parties, to the unexpected death of a young child, you don’t want to miss their remarkable story. My Flesh and Bloodwill be released on video and DVD this November. —K.A.M.

The documentary My Flesh and Blood premiered in New York, Los Angeles, and San Francisco on Thanksgiving Weekend 2003. It was the winner of the Grand Jury Award, Audience Award and a Best Director Award for first-time filmmaker Jonathan Karsh at the Sundance Film Festival. Catherine Clyne had a chance to talk with Susan Tom about the documentary, her role as a mother, and the meaning of patience.

Overall, how do you like how Flesh and Blood came out?
I think it’s fine. I mean, are there things that I wish weren’t in there? Sure. But I understand what a documentary is and how you put a movie together and how you have to have highs and lows and angst, sad and happy; you have to take people on an emotional ride. And I think that’s probably one of the best things you can say about a documentary; it’s accurate. So I’m okay with it.

What has the response been like to the film?
Well, I’m a big hit in South America. [Laughs.]

In South America? Why is that?
[Laughter.] I don’t know. I hear from a lot of people in South America. I’ve answered over 700 emails from all over and most have been very positive. You know, everybody has an opinion and they feel they know you once they’ve seen the movie. A lot of people with stories like mine, dealing with kids and all of that. I sort of offer them support, you know, I can’t solve their problems but I can say that I’m thinking about them.

Are they people who have special needs children?
Yes, lots. Or people in emotional turmoil themselves or who are bipolar, like [my son] Joe, who just can’t find the help. You know, mental health services in the U.S. are poor—really, really poor. It’s a sad commentary. We have homeless people, people who are in severe mental anguish and cannot find the help and support they need; and people blame them for things they can’t control.

How did the kids like the film?
I think the first time we all watched it, it was really sad, you know, hard to watch. The second time they got into watching themselves. And the third time, they were critiquing each other’s works. [Laughs.] And quoting each other. Now it’s like a Disney film.

So who gets the best actor award?
You have to realize that nobody was acting. You know, we were just living our lives. I don’t think that anybody thought that anyone was any better than anyone else.

Well, who’s the film star?
Joe.

Yeah, undoubtedly.
Yeah. And he would have loved it.

What would you advise people who are inspired by the film and who would like to give special needs children a good home?
I don’t think they should use the film as a stepping stone to go into adoption or foster care. That’s something that they have to decide for themselves. However, if they choose to go into foster care or adoption, then they need to take a course, something like MAPP training—Model Approach to Partnerships in Parenting. Oftentimes they are offered by the agencies. It is also important to make sure the agency has proper support mechanisms for them, because most children who are in, or have been through, foster care or adoption come with a lot of baggage. Even if you’re adopting a newborn, you need that support because the birth family is always there—whether [or not] they’re there physically. For every holiday, every birthday, for everything, it’s always there and they need to acknowledge that early so it doesn’t become a big thing when they’re teenagers.

What are some of the things your children have taught you?
Patience. And then probably patience. And then, really, I think patience.

I am almost there with patience. And breathing. Long, slow, deep breaths. And patience.

This film seems so invasive and something that you mentioned before is everyone feels that they know you. And mention of Joe made me go quiet because I felt like I lost a family member while watching that. And I absolutely can’t help asking—is Anthony still with us?
Yes.

He is?!?
Yes. He says he’s not going to die. And no one can figure out how he’s still alive. I mean he has no meat on one leg. You can see the bone. This…you would not believe. It looks like a haunch of meat that’s been chewed on, ravaged by some animal. And we’re able to keep it clean, but he’s in pain. And I don’t know, I don’t know why. I mean, I don’t want him gone.

But the suffering is really excruciating.
Exactly. The suffering is unbelievable.

What gives you hope?
In general, that my kids will grow up and have families and be happy and lead fulfilling lives and be kind. All of the things that any other parent hopes for their children. That maybe they’ll remember me.

I think one of the issues about special needs children in this country is that people don’t have enough interaction with them. And it was very sweet to just see in your family—people are normal, and the children are normal, and you just want to give them a normal life. [Laughs.] It’s not such a big deal.
Right. When you start seeing our film, when people are flipping channels, they stop to see it because we all stop to see a train wreck. You know? It’s true. So, they’ll stop to see a train wreck, but within a few minutes, they’re no longer seeing the train wreck. They’re not seeing disabled kids, they’re just seeing kids and a ‘regular’ family.

[Laughs.] Yeah, a regular American family. And there’s a lot of love there, and there’s enormous inspiration just to be taken from that.
Well, I hope so. That would be nice.

To learn about the Tom Family Education Trust and for information about
My Flesh and Blood, visit www.stomfamily.com.

 


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