How do you survive the death of a child? How do you go on knowing another child shares the same genetic disease? When you've traveled umpire John Hirschbeck's journey, being spit upon is just a footnote.


December 29, 1996|By Lisa Pollak | Lisa Pollak,SUN STAFF

The boy loves games of chance. He loves slot machines and playing cards and instant-win lottery tickets. He learned at an early age to count coins, and to bet them. He learned in the hospital that money comes in get-well cards.

Michael Hirschbeck learned to play gin in the hospital, too. His father taught him, during the long weeks of waiting, between the chemotherapy and bone marrow transplant and seizures and pneumonia and days when he was too sick to even eat a cup of ice chips. He never asked a lot of questions, even the day his parents told him he had the same disease as his older brother, who was already dying, and that it would take his baby sister's bone marrow to save his life. He was 5 years old.

"If you want to cry, it's OK," John and Denise Hirschbeck told Michael, and he did, and so did they.

They didn't tell him he was only the 18th child with this disease to have a bone marrow transplant; or that his baby sister was a carrier of the disease; or that the doctors had anguished over whether the sister's tainted marrow would help him.

They didn't tell him it might be too late to save his brother.

That was 1992, the summer Michael learned to watch baseball on television like the grown-ups do, patiently and for hours, while recovering from the transplant. That was the fall he watched the World Series with his father, the American League umpire who stopped working when his sons got sick. People might think the worst thing that ever happened to John Hirschbeck was getting spit on by Orioles second baseman Roberto Alomar during a game last season. But it wasn't, not even close. When the worst thing happened to Hirschbeck, when his children were diagnosed with a deadly neurological illness, he was thankful for baseball. Not just for the season off, or the fund-raiser where famous players sold shirts and signatures to help pay medical bills -- but for that simplest of baseball pleasures: games to watch with his son.

In the hospital, the Hirschbecks also played a game called Trouble. In Trouble, you use a die to move colored pegs around a board; when your peg lands on the same space as someone else's, it's trouble.

The game was Michael's favorite.

The object was to get home safe.


Everywhere the older brother went, the younger brother followed.

John Drew Hirschbeck was born in 1984, Michael two years later; they were October babies with birthdays two weeks apart. They played video games and basketball and ran in the woods and rode bikes together. "If John was at our door, Michael was right behind him," said Joanie Ramson, whose son, Johnny, was the older brother's best friend. "I can remember Michael coming down the street with one training wheel on his bike, trying to keep up with them."

The Hirschbeck boys shared. They shared the love of their mother and father and younger sisters. They shared a big bedroom in a warm, tidy house in Poland, Ohio. They shared a mutated gene, passed silently from grandmother to mother to children, silently because it didn't kill girls, silently because it is so rare few people have ever heard of it. So difficult to say that it goes by initials: ALD.

"Adrenoleukodystrophy?" a librarian once asked Denise Hirschbeck. "You don't want to know about it."

The Hirschbeck boys were close, close as brothers could be, and yet they were different. John's eyes were blue, Michael's brown. John batted left-handed; Michael batted right. John was the first child, the one with his father's name, the one who sat on a bar stool, drinking milk while daddy drank beer.

Little John, they called him. Little John, who memorized country songs and banged up a storm with his miniature tools and laughed so hard he made you laugh, too. Who had a steam shovel on his birthday cake and was going to drive John Deere tractors when he grew up. His parents smiled. "Why don't you do real good at something else and I'll buy you one," said his father. Little John could do anything. He was smart and adventurous and happy and healthy.

And then, mysteriously, silently, he wasn't.

The trouble started at school. In first grade, John had problems paying attention. His writing looked shaky, and he'd lose his place in his work. The doctors prescribed medicine for attention deficit disorder, but nothing changed. Spring training came, March of 1992, and on the family trip to Florida little John seemed confused and frightened. Once he saw a dead bee and thought bees were coming to get him. A stranger asked his age, and he couldn't answer.

He was 7.

The next month, he had a brain scan. The day the results came back, Denise called the umpires' locker room in Seattle. It was April 7, 1992, the night of the American League season opener, Mariners vs. Rangers. John Hirschbeck was getting ready to walk out to the field; he was working third base that night.

There are spots in his brain, Denise told John. White spots, where there should be gray.

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