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Columnists - Columnists: Jeff Jardine

Sunday, Feb. 08, 2009

Two of a Kind: Best buddies like what they see inside, too

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DENAIR - On his first day of kindergarten in August, 5-year-old Derek Coleman came home and told his mother, "Henry and I have the same piece of skin on our heads."

He pointed to the hairless racing stripe that runs from ear to ear over the top of his head.

Under most circumstances, a parent's response would have been, "Who's Henry?" But Rachel Coleman endured too many hours in hospital waiting rooms and too many sleepless nights to brush aside the significance of his words.

In a kindergarten classroom in a very small town, there is another child who's had the same kinds of cranial and facial surgeries as her son.

Henry is Henry Johnson, a 6-year-old who was born with Apert syndrome. I wrote about him last year as his mother, also named Rachel (Johnson), prepared to stage the first Henry's March walk-run benefiting the Children's Craniofacial Association. The nonprofit organization helps children get necessary surgeries and procedures. Last year's event, at California State University, Stanislaus, raised more than $26,000. This year's march will be March 22, again at the Turlock campus.

Derek was born with a cleft palate, meaning the roof of his mouth failed to develop properly, and he also lacked a soft spot on the top of his skull. Both birth defects required surgeries.

Henry's Apert syndrome prematurely fused his skull, fingers and toes and caused some facial deformity. So Henry has had not only head and facial surgeries, but operations to free his digits. Both boys have more operations in their futures.

These two little guys have become inseparable. Best buddies. Brothers.

Because of their physical similarities? Maybe at first. But they quickly progressed beyond the initial curiosity.

"They're friends for no other reason than they get along," Rachel Coleman said.

From their energy levels and exuberance, you'd never guess they have had more than 20 major surgeries or medical procedures between them.

They play. They laugh. They roughhouse. They are oblivious to their own looks or each other's. What they see in the mirror is the only normal they've ever known. They're too young to understand the operations that lie ahead and so spirited and resilient that it doesn't matter.

"Derek doesn't know he's different and he doesn't know Henry's different, either," Coleman said.

They met by a quirk of fate. Henry thrived in special education kindergarten at Brown Elementary in Turlock last year. But living in the Denair district, and with his sister Lauryn attending Denair Middle School, Rachel Johnson and her husband, T.J., wanted to keep them in the same district. Because of his surgeries, Henry is a bit delayed in his maturity and needed to repeat kindergarten. His parents wanted him to be with the same group of kids all throughout school because experts told them the other children would be more accepting and less likely to tease him. So they moved him to Denair Elementary.

Rachel Johnson decided to prepare the other parents for Henry's arrival, hoping they would prep their children similarly.

"I told the teacher I wanted to address the parents," she said. She showed them a photo of Henry. "It was his first time in regular ed. I told them I have this special little kid, and that I wanted there to be an open line of communication."

While she worried about how the other kids might perceive Henry, he had his own concerns. Though he has amazing dexterity in his surgically separated fingers, there are some things he can't overcome.