For the love of God and a boy named Noah: Family copes with debilitating disorder

Stephanie Veale

The Rev. Mike Ballman has two full-time jobs — working as a pastor at Cornerstone Community Church in New York Mills and caring for his chronically ill son Noah.

Noah, 7, was born with a rare metabolic disorder and requires constant monitoring.

Mike Ballman and his wife, Pam, have to stay up all night with Noah when he's ill or when they're short on nursing staff. They rarely get to spend time together, since they care for Noah in shifts.

Amid the chaos of his son's illness, Mike Ballman's church is moving to Oneida Square in Utica.

Noah's disorder complicates the Ballmans' relationship with God, they said. The church congregation is their built-in support group.

"We always say, 'It takes a community to raise Noah,'" Mike Ballman said.

Ballman shares his duties with a co-pastor, Leon Hayduchok, so his hours are flexible. The congregation understands when Noah's hospitalizations whisk the Ballmans, who live in Whitesboro, out of town for weeks at a time.

Church members often stop by with homemade meals. Some offer to clean the house or mow the lawn, and others come over just to keep the Ballmans company, the couple said.

A Severe Condition

Doctors say they know of no other child with Noah's condition, which leaves him unable to stand, walk or talk, the Ballmans said. Noah also has developmental delays.

Noah has chronic problems with nausea and vomiting. He goes through unpredictable phases of feeling well and getting sick.

When he's feeling well, he can stay sitting up on his own. He smiles easily, looks at books and watches television. He gets occupational therapy and physical therapy, his parents said. His favorite activity is aqua therapy, where he gets to splash around in the water.

Noah is social. Sometimes, his expression changes as he takes you in. His eyes, bright blue, are wide and alert.

In these moments, Pam Ballman imagines what Noah would say if he could talk.

"I wish I could hear your thoughts once," she told her pajama-clad son Tuesday afternoon as he curled up in her lap on the living room floor.

From October 2006 until April of this year, Noah experienced relative good health. The Ballmans call the breakthrough the "happy months."

But then the medications stopped working.

Even though Noah is seeing the best doctors in the country for his disorder, the details of his condition remain a mystery even for expert physicians.

He has no prognosis. He's had many surgeries. Last summer he was in the hospital for two months straight: a month in Syracuse, a month in Boston.

When the medications abruptly stopped working, doctors could not explain why, the Ballmans said.

Bouts of vomiting can last seven days or more. Noah can stay awake for days in a row without sleeping when he's feeling ill, and he has no verbal way of expressing his pain.

Another ongoing challenge is keeping a full nursing staff, the Ballmans said. Noah can get 20 hours of private nursing care per day, but it's difficult to find qualified nurses with Medicaid provider numbers, the Ballmans said.

And when Noah needs extended hospitalization, it can be impossible for the Ballmans to retain nurses while they're out of town.

Maintaining Faith

Mike Ballman said he often questions why God would allow such a small boy to suffer as much as Noah does.

Noah first was diagnosed as an infant in 2000. Ballman was walking through a hallway in Johns Hopkins Hospital in Baltimore when he realized just how many other families were suffering.

So many children on Noah's floor were battling serious illnesses, Ballman said.

"It's not just about us," Ballman said.

Pam and Mike Ballman said they hope their family's ordeal makes them more compassionate to the troubles of others.

"It's learning how to be transparent about our own struggle as a way to lead people," Mike Ballman said. "We're sharing our struggles, rather than pretending everything's great."

Outreach and Support

Grace Wu, a member of Cornerstone Community Church, visits her friend Pam Ballman whenever she can.

The congregation as a whole has come together to provide the Ballmans with financial and emotional support, said Wu and her husband, Steve.

Grace Wu said she hopes her company makes her friend feel less isolated and alone.

Pam Ballman does part-time administrative work for a local doctor's office and stays home with Noah the rest of the time. She often works from home.

Sometimes, Grace Wu and Pam Ballman just sit with Noah and talk, Wu said.

"Wherever he goes, I think people notice him," Grace Wu said of Noah. "He often has a smile on his face. ... He's just such a trooper. He really brings people together."

Co-pastor Hayduchok said he and Mike Ballman are very close. Hayduchok sometimes helps the Ballmans with projects around the house. He tries to serve as Mike Ballman's sounding board whenever possible.

"What's really amazing is how resilient Mike and Pam are," Hayduchok said. "With how much direct care Noah needs, I often don't understand how they survive day to day — their energy level, their ability to give."

And for Hayduchok, Mike Ballman is more than a colleague.

"Mike's been the best friend that I've ever had," Hayduchok said. "He's very able to listen and be there for other people. ... I have never heard him say to anybody, 'You think you've got it bad?'"

Utica Observer Dispatch