Williamsburg family promotes 'tubie' awareness

"It's not uncommon to struggle with feeding intolerance," said Sullivan, who sees one or two children a year with similarly severe symptoms. "He has a hypersensitivity to having something in his stomach. It's distressing to him. We don't know what's going on at the cellular level."

It took the couple six months to get Adam in for an appointment at Nationwide Children's Hospital in Ohio for more specialized testing that brought broad diagnoses of his stomach conditions. By then, the baby had also been diagnosed with microcephaly, indicating that his head and brain were not growing at the appropriate rate.

A model of organization, Katie maintains an inches-thick binder of Adam's medical history. It's divided into sections for the pediatrician, neurology, genetics, occupational therapy, ophthalmology, orthopedics and more.

"He's become my life's work now," said Katie, 30, who holds a master's degree in higher education and gave up her work as a college counselor at Thomas Nelson Community College to care for him. She has also put on hold her dream of becoming a dean.

Likewise, Aaron, 32, received a one-year delay in his Coast Guard orders to accommodate Adam's needs. In February, the family learned that Aaron will be assigned to a Portsmouth-based cutter with rotating two-month coastal deployments.

"That way we can keep Adam's doctors," said Katie, and Aaron can gain the necessary sea experience for advancement and higher pay to offset the loss of her income.

Although they have not incurred major out-of-pocket medical expenses, they're adapting to being a one-income family and Katie still has several thousand dollars to pay in graduate loans.

Coming to terms

Far from their extended family in Florida, the Marcerons struggled to cope at first.

"This time last year we were scared. For a long time we just sat in the house. I wasn't ready to accept that my son had a brain disorder," said Katie.

At the same time, Aaron was dealing with the dashed expectation that his son would be a "mini-me."

"I grew up playing sports. I was supposed to teach him to play baseball and football. This is what I got," he said, hoisting Adam playfully over his head.

"Once you finally accept it, you move on. He could be in the Special Olympics," he added with a grin. Meanwhile, he keeps Adam beside him when he watches the Tampa Bay Buccaneers and ESPN highlights on TV.

For Adam's mother, the turning point came a few months ago when she stumbled across the story, "Welcome to Holland," a fable by Emily Perl Kingsley about adapting to life with a disabled child.

"It was inspirational," said Katie, who soon after took on a part-time retail job to give her some time out of the house. It took Aaron a little longer to reach acceptance, and both readily concede that they still have bad days, grieving the loss of what might have been.

However, Adam's special needs no longer stop the family from going out and sharing activities, though they resent the stares of strangers.

"You get angry a little bit," said Aaron, sitting on the floor cradling his son.

Now they don't hesitate to stash his feeding apparatus in a backpack and use a special stroller to go shopping, to the park, to restaurants and outings.

Though they qualify for respite care, neither is ready to leave their son in the care of anyone other than family. They're even reluctant to allow friends to hold him. "He's not the easiest baby," said Katie.

"And you throw all of this in there," added Aaron, indicating the special equipment — the feeding tube and IV pole, the burp cloths, and the heavily padded wheelchair-like stroller.