Son of Light
Ye are all the children of light,
and the children of the day:
we are not of the night, nor of
darkness.
-- 1 Thessalonians 5:5
She had three children
with another on the way when her husband's job moved them to an Upper Midwestern
college town. She didn't know a soul. But as her pregnancy advanced, she
managed the move. Ten days into their new house, she gave birth.
He had white hair.
She didn't know enough to use the term "person with albinism" instead of the
offensive horror-flick epithet. But she "knew."
"I really was a
wreck and it got progressively worse," she recalled. "I didn't want this,
wasn't up to it at all."
The next day, the
doctor told them albinism is simple genetics: two recessive genes match up. It
affects one in 17,000 people.
And guess what?
The world's leading expert on albinism genetics happened to be with the local
university. He dropped by.
"Hi! I'm Dr.
So-and-So . . . and this is going to be OK."
Those were words
she needed to hear, but didn't yet believe. He said people with albinism lead
good lives. In fact, the dean of the local law school had it, too. The biggest
challenge: low vision because of a lack of pigment in the eye. But
ophthalmology had answers.
Her pediatrician asked
if a resident at the local medical school, also with albinism, could come over.
His first name: John, the same as their son's. He was 28, and delightful.
His visit "really
brought a sense of normalcy," she said. He urged her to call his mother.
They bonded. She
sent her a beautiful letter with pictures of her John growing up, driving a
boat, being active. "She wanted me to know all the things he could do."
Others counseled
her. Would everybody stare? Maybe. But hey: they were in a college town among
Scandinavians galore. EVERYBODY's light-haired and light-skinned, or had body
piercings and mohawks. He'd blend right in.
Would kids tease
him? Well . . . who DOESN'T get teased?
Would he see well
enough to drive? It turns out a local ophthalmologist was an expert on albinism.
And John sees better than expected; he very well could drive. The doctor couldn't
get over it. "Well, there're a lot of people praying for him," the mother said.
"That explains it," he replied.
Still, she went through
a desert time, depressed or raging against God. "Things like this didn't happen
to people like me. I was in shock. I realized I never really had control over
my life before. That was a huge lesson I had to learn."
Her mom, sisters
and other friends called her often. "You can do this," they'd say. "Things have
a way of working out." A local priest helped, too.
Then one day when
John was about 2, she was in the pits. "Just give me a sign, God, and it'd
better be clear," she pleaded. A while later, she went into John's room. He
looked up. "It's going to be OK, Mom," he said.
A few years later,
she got a call from the mother of a newborn with albinism in a nearby city,
desperately upset. "I really think you ought to come and meet John," she said.
So they did. They spent the day. They went to his soccer game. They saw how
smart he is, and how much fun.
As they were
leaving, the other mom said, "You don't know what this meant to me."
She replied, "I
think I do."
She's grown so
much, through it all. Her relationship with God has deepened and sweetened,
like a longtime marriage when you've been through the mill together.
She sees the
light.
And that's what
you think, when you see John. His hair, his skin . . . they're light, that's
all. He's 11 now, and quite the scholar, artist, musician and comedian. He's
writing a book, a real swashbuckler. What's he going to do next?
"Write the sequel,
of course," he says.
He likes himself.
He's light-hearted. Goes with his skin. Goes with everything about him. Everybody
was right: this is going to be OK. More than OK.
And there's a
Light above Who knew it all along. †
--------------------
For more about this condition, see www.albinism.org
