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Thursday, Dec. 23, 2004 02:24 pm

The gift

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Cover photograph by Nick Steinkamp

Darlene Anderson has every right to feel sorry for herself. The cruelest fate any mother can endure -- the death of a child -- has befallen her not just once but twice. This time last year, her own mother died, leaving Darlene to take care of her sister, who lives with HIV. And this year, Darlene's holidays were interrupted by an unplanned journey to Texas, where Darlene's critically ill aunt was requesting her presence.

But there's something about Darlene that sheds pity as raindrops run off a leaf. She has a certain strength, a certain spirit, that has sustained her through tribulations most of us can't imagine.

There's no plea for help encoded in her story; nothing can replace the treasures Darlene has lost. Nor is there a handy step-by-step explanation of how she has managed to survive the unthinkable. She's simply living proof that it can be done -- with grace.

Darlene was first featured in Illinois Times a decade ago, when she learned that her son J.D. had a rare and brutal neurological disorder called leukodystrophy.

He had just turned 3 when he fell several times in the span of a week, each time hitting the same side of his head. The third time, instead of letting out a lusty cry, J.D. reacted with a calmness that unnerved Darlene.

"It was like he was on Valium or something," Darlene recalls. "I thought, 'What is wrong with this kid?'"

The doctor tried to convince her not to worry, that there was nothing wrong. "I happened to take my mother with me, and she was very, very assertive," Darlene says. "She said, 'No, you're not just going to send this kid home. There is something wrong, and you are going to do a CT scan.' "

Two hours later, Darlene and J.D. were summoned back to the hospital, where the little boy underwent five days of tests. Results showed that he had a genetic disorder that destroys the myelin sheath around the axon through which nerve impulses are conducted. It's an inherited condition with no treatment or cure, and it is always fatal.

For Darlene, this horrible news signaled not only J.D.'s certain death; it also presented an unimaginable dilemma: Darlene was in the early stages of another pregnancy. What about her unborn child?

No one could answer that question. Darlene's doctor refused to perform an amniocentesis.

Desperate for an answer, she tracked down the leading scientist in the field of pediatric neurology: Hugo W. Moser, M.D., director of the Neurogenetics Research Center at the Kennedy Krieger Institute in Baltimore. With her mother and an ailing J.D. in tow, Darlene spent 10 days in Baltimore undergoing a battery of tests, the results of which appeared perfectly normal. But many types of leukodystrophy can't be detected until a person is several years old. So Moser offered no guarantees about Darlene's baby.

Darlene decided not to terminate her pregnancy. "I just couldn't do it," she says. A few months later, Richard was born, apparently healthy.

By then, J.D. was bedridden, dependent on a feeding tube, and unable to speak. Nevertheless, the two boys developed a special bond. Richard's favorite pastime was crawling all over J.D., and J.D. would tease Richard by swatting him away.

Richard was barely 3 years old when J.D. died, but he complained to Darlene that he missed his brother.

"I want to see J.D.," he would say.

And Darlene would tell him that he would see his brother again. In fact, they would be reunited all too soon.

In August 1993, Darlene took Richard to St. Louis Children's Hospital for an MRI -- the only way to measure the health of the myelin sheath. She wanted to find out whether Richard also had leukodystrophy.

"I just had to know," she says.

The test revealed deterioration of the white matter in Richard's brain -- a sign that his life would be cut short as J.D.'s had been.

The boys' father, an alcoholic, was devastated by J.D.'s death. Darlene's marriage, which she says was always rocky, crumbled.

There are more than 30 types of leukodystrophy. The most common, adrenoleukodystrophy, was the subject of the 1993 movie Lorenzo's Oil. The Anderson boys had a strain that is much less common (worldwide, fewer than 100 cases have been documented) -- a disorder known as "vanishing white matter," or CACH, which stands for "childhood ataxia with diffuse central nervous system hypomyelination."

Over the years, Darlene has had to explain CACH in plain English more times than she can count.

"OK, you've got a telephone company and a telephone, but the lines connecting them are getting cut off," she says, making scissoring motions with her fingers. "So you've got a bad connection. Then things we normally do, like breathe and see and hear, things we don't even think about doing, in these kids, it starts getting cut off. They have a bad connection."

Learning disabilities are often the first sign of the disease. Attention-deficit disorder may be diagnosed. Later the affected child experiences seizures and gait problems and eventually loses control of his or her limbs. Later still, the child loses the ability to swallow, digest food, or breathe.

The disease moved more slowly with Richard than it had with J.D. Family and friends say that, up until a few months before his death, Richard appeared perfectly normal -- or maybe even a little more charming than your average adolescent boy.

"He was a very innocent boy. He wasn't too shy or too cocky to talk to girls," says Karon Hamrick, a family friend. "He had really ruddy cheeks and the most beautiful smile. He was like an angel, almost."

"He could make a conversation anyplace," says his grandfather Dwight Anderson, who took Richard out to breakfast most mornings, as well as on extended trips: "If you went in the doctor's office, a lawyer's office, anywhere, he'd talk to anybody. No matter where you took him, he would find a friend.

"He was just really enjoyable to be around," Anderson says. "My wife, before she died, said he brought her more happiness than anyone she had ever known."

Several members of the Anderson clan live in the same neighborhood, a group of houses clustered around a large pond north of the airport on Chinquipin Road. Richard was part of the second generation of kids to grow up there, and the closeness of the community allowed him a great measure of independence. He traveled wherever he wanted on his all-terrain vehicle.

"I bought him a four-wheeler when he was too young to be driving one," his grandpa admits. "He never hurt himself. I did it because we knew he wasn't going to be here very long."

Everybody says Richard loved his four-wheeler -- that and Tasha Larson, his 17-year-old neighbor and friend. "They were really, really close," says Tasha's mom, Debbie Larson. "I know Tasha misses him a lot. It [Richard's death]hit her pretty hard."

The only sign of Richard's illness was his learning disabilities. Although he was bright, he was never able to read or write -- a fact that puzzles his grandfather.

"He was smart. You couldn't put nothing over on him. He was perceptive as the dickens," Anderson says.

When Richard was little, he would join his grandpa for motorcycle rides. When he thought Anderson wasn't going fast enough, he reached up and twisted the accelerator. Given half a chance, he'd sneak off on the riding lawnmower. He could uncork any childproof medicine bottle and dial the telephone properly, even though he didn't recognize numbers.

He also liked to disassemble things and (usually) reassemble them.

"I called him my spoon mechanic," Darlene says, "because even when he was a little kid, he would get silverware and try to take things apart with a butter knife. And he'd put stuff back together. Sometimes -- not all the time."

Raising Richard presented a set of problems most parents don't encounter: How do you set limits for a doomed child? Darlene admits she gave Richard virtually everything he wanted. For example, when she tried alternative therapies on him -- a restricted diet at one point, massive amounts of vitamins and minerals at another -- she couldn't bring herself to force him to follow these regimens if he found them unpleasant.

"How can you deprive a child that's got a death sentence anyway?" she asks.

But her father clarifies: Even though Darlene spoiled Richard, he was not a spoiled child. "It never affected him," Anderson says.

As her son matured, Darlene faced another conundrum -- what to tell Richard about his hopeless plight.

"He would ask me, 'Mom, am I sick?', and he would have trouble understanding why his legs weren't working right," she recalls. "Finally I just told him: 'OK, you're sick. You're like your brother, and you're gonna go to heaven and see him. I don't know when, but it's gonna be a long time. I'm gonna keep you here as long as I can.'"

When Richard started to go downhill, he went quickly.

Last Christmas, Darlene's mother died. When loved ones gathered for her funeral, someone had a cold, and, one by one, family members took sick. Richard was one of the last to get the bug, but it hit him the hardest. Just a few weeks after serving as a pallbearer at his grandmother's funeral, Richard couldn't walk, couldn't eat, couldn't hold his head up, couldn't muster the energy to fight the intravenous line, even though he had a terrible phobia of needles.

When he slipped into a coma, Darlene faced another dilemma: Should she put him on a feeding tube, as she had J.D.? She decided she couldn't.

"Richard had gotten a taste of what life was all about," she says, "and I just couldn't see letting him be bedridden for that long."

But when she took him to St. Louis Children's Hospital, the neurologist on call convinced Darlene to rescind the do-not-resuscitate order she had signed. And sure enough, the respirator revived Richard. When he regained consciousness, he told his mother he wanted to go home. Darlene told him he would have to start eating.

So Richard consumed enough food and liquids to satisfy the hospital, and Darlene thought that perhaps the neurologist had been right -- perhaps her son would bounce back.

Once home, however, Richard stopped eating and never spoke another word. The grand mal seizures that had begun as infrequent occurrences came more and more often, until he was seizing every 20 minutes. Then his breathing became labored, and Darlene realized that Richard was almost gone.

He died in the wee hours of the morning on Feb. 28, two months to the day after his grandmother's death. He was only 13 years old.

As Darlene tells her story, tears overtake her once or twice. She reaches across her kitchen table toward the napkin holder and grabs an orange paper square with a turkey on it.

"I knew I had to get rid of these Thanksgiving napkins," she says, wiping her eyes. "Christmas is almost here."

Darlene wears a special crystal around her neck and a set of hematite beads around her wrist. She is a spiritual person who learned to do reiki massage and healing "energy work," and jokes that she has a lot of psychic friends. Her main paycheck comes from the Illinois Department of Revenue, where she has worked for the past 25 years as a tax-revenue specialist. But it's not the type of job that provides fulfillment. For that she looks to family, friends, and her own small business, JDR Massage.

Facing her first Christmas without Richard, Darlene put up a tiny tree she bought at the dollar store. "I'm cooking dinner because I have the big table. Everybody will be here for Christmas this year," she says.

She doesn't pretend to find any silver lining in Richard's death. "I don't think there is any relief," she says.

But if she could rewind her life and plot it differently, Darlene says, she wouldn't change anything:

"I don't regret anything that's happened. I mean, I regret that my kids are not here. But if I hadn't had the kids I had, I probably wouldn't be where I'm at spiritually.

"If I'd had kids that were normal, I wouldn't have felt the love that I do."

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