The Boy in the Moon by Ian Brown

Author:Ian Brown [Brown, Ian]
Format: epub
Publisher: Random House Canada
Published: 2010-01-22T07:00:00+00:00

There was always another story to top the last one. However difficult someone’s life had been—and I often had to coax people into complaining, so strong was the impulse to appear unaffected—there was always someone else who had it harder.

Angie Lydicksen still lived in the town where she grew up in Connecticut. She was forty-two years old and worked as the manager of a dental office. She had two boys, Eric, who was ten, and Luke, who was eight and had CFC. Before giving birth to her first son, she had been “desperate” to have a family; she had three miscarriages and finally resorted to fertility drugs. But with Luke she became pregnant quickly and just when she wanted. “I wanted to have them close together,” she told me. Her pregnancy with Luke was “more than perfect,” and even when she went into labour two weeks early the doctors considered her full-term. “My problem with pregnancies was always getting to the end of them,” she said, “so when I got to the end with Luke, I never imagined a whole other life would start.” A strange reward for persistence.

Her life changed in an instant. “From the second he came out, all hell broke loose. As soon as he came out, and they placed him in my arms, both my husband and I knew something was wrong. He wasn’t connecting with us.” He was moved quickly to the newborn intensive care unit. Meanwhile his mother began to hemorrhage in her hospital room and passed out. When the nurse found her, she passed out too. All in all, a day of note. Luke stymied his doctors; no one could diagnose his ailment. Angie carted him to Children’s Hospital Boston and to countless Connecticut health care complexes for three years before someone suggested Costello syndrome. She accepted the diagnosis with reservations—she didn’t think Luke looked entirely like other Costello kids. Then she read an article in Rosie magazine. The article, as it happened, was written by my wife. When Angie read Johanna’s descriptions of Walker, she immediately took Luke and the magazine to her pediatrician and asked it if was possible that Luke had CFC instead. The pediatrician couldn’t have cared less. “He told me to take him home and love him. ‘You got what you got,’ he said. So I got rid of that doctor.”

She embarked on a long and frustrating search for a more precise diagnosis. She tried to see John Opitz, but Opitz was busy and couldn’t see Luke for a year. A year. She eventually met the geneticist in Salt Lake City, but Opitz didn’t think Luke was CFC: the boy’s features were “softer” than those of a typical CFC child (Angie had noticed that herself), and “he didn’t like the fact that Luke had eyebrows”: 95 percent of the children with CFC symptoms who had eyebrows turned out to be Costello kids. To Lydicksen, such judgments seemed like guesses.

She carted her boy to the annual conference of Costello children, but she still didn’t think he fit.

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