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

02/08/2009 2:34 AM

02/15/2012 8:58 PM

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.

"He complained because he can't do the monkey bars," she said.

A few days after school began, she attended another parents' meeting.

"A woman walked up to me and said, 'Hi, I'm Rachel,' " Johnson said. It was Rachel Coleman, Derek's mom.

She told Johnson how much Derek liked Henry, and how they played together. The mothers also talked about their sons' conditions, their surgeries and how much these little boys have in common. They like the same kinds of shoes. They've memorized each other's phone numbers and call each other frequently. They both like hockey. Both have moms named Rachel. The boys visit the same ear, nose and throat specialist in Turlock.

"And I'd never met anyone who'd had the same surgery as Derek," Rachel Coleman said.

Coleman also knew nothing about the Children's Craniofacial Association, or the services it provides. Johnson brought her up to speed.

The boys' bond grew stronger each day. When Derek needed surgery to reconstruct his nose, Henry sent him a gift.

When Henry got an ear infection and needed minor surgery, Derek went with him to the doctor's office.

When winter break began, Derek needed a Henry fix.

"I had to come get Henry," Rachel Coleman said. "He had Henry withdrawals."

So Henry spent New Year's Day with them. And when he arrived back home that night, he carried a large toy motorcycle.

"I asked him, 'Where'd you get that?' " Rachel Johnson said. "He said, 'Derek bought it for me.' "

Indeed, Derek purchased the toy using a Wal-Mart gift card he'd received for Christmas.

"(Henry) found a soul mate in this kid," Rachel Johnson said. "I've never seen two people who aren't related who are as connected as Henry and Derek. They wholeheartedly love each other. Derek has a vocabulary like a fifth-grader. Henry -- you've got to have a special decoding system to understand him. But Derek interprets. He understands every word Henry says."

"Derek speaks perfect Henry," Coleman added.

Two little boys, classmates and best of friends.

Could there be anything more normal than that?

Jeff Jardine's column appears Sundays, Tuesdays and Thursdays in Local News. He can be reached at 578-2383 or jjardine@modbee.com.

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