A parent's worst fear settled into Dan Habib and Betsy McNamara's minds. Their son Samuel, who had been born with a neurological disorder, was in an induced coma. He was in critical condition. But the danger passed, and the boy's neurologist had an idea that changed their lives.

Dr. James Filiano told Dan he should document the family's challenge to give Samuel the best life he could have. After all, he said, Dan had the skills for the job. He was the Monitor's longtime photo editor, expert at seeing and shaping the world through a lens.

I have worked with Dan for nearly 20 years. Like all journalists, he believes in the power of stories. Initially, he liked the idea of documenting Samuel's progress because it would give him something positive to do in his son's life. He did not yet know how the story would transform him.

DAN HABIB / Monitor Staff Samuel at age 3. Zoom Purchase Photos Online

Dan's film, Including Samuel, is nearly finished. Eight screenings are scheduled this fall, including the public premiere at Concord's

City Auditorium on Nov. 6. Dan hopes the film will earn wide distribution and a national television audience.

The challenge of Including Samuel is the public's challenge: to create a society that gives every child a place in the community along with high goals and the tools to reach them. The film is mainly a personal journey. Its subject is how hard parents of children with disabilities must fight, and how much help they need, to secure for their children what other parents take for granted.

Samuel was born Dec. 7, 1999. As the months passed, Betsy began to notice that he could not do simple things that their first son, Isaiah, had done at the same age.

"There is this unbelievable moment at about four months when a child notices his hands and tracks them with his eyes," Betsy said in an interview. "With Samuel it didn't happen."

DAN HABIB / Monitor staff Samuel at Snow pond. Zoom Purchase Photos Online

At six months, it became clear that Samuel was way behind in his physical development. He went from not gaining weight to losing weight. Blood tests pointed to a metabolic disorder.

Samuel and his family entered upon an endless road of diagnostic tests, medicines and health crises. Samuel has cerebral palsy, meaning his brain does not communicate properly with his muscles. Cerebral palsy is often caused by oxygen deprivation during birth. But there is no evidence this happened at Samuel's birth. So even now, Samuel undergoes tests and his family moves forward without knowing the underlying source of his condition.

"We were desperate for a name for this for a long time," Betsy said. "But at some point we realized that he's still Samuel, no matter what you call it. And there are worse things than not knowing."

Betsy and Dan turned to the UNH Institute on Disability for help. A year-long leadership seminar there taught them about the challenges they faced, and equipped them to be advocates for Samuel. Betsy called the course "both a how-to and an inspiration."

Betsy and Dan learned that the divorce rate for parents of severely disabled children was extraordinarily high, over 80 percent. Stress, tension, financial problems and emotional estrangement all come with the territory.

"Each parent deals with it differently, and this can push couples apart," Dan said.

At first, Betsy tried to be everything to Samuel, but it got to the point where "you start looking at your own kid as a case. You can't do that." As she says in the film, she realized she wanted to be Samuel's mother, not his therapist.

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