Creating Amazing Grace From Life’s Heartbreaks

They have learned how life unfolds in giant waves. With such force, Catherine Curry-Williams and Scott Williams were carried, first to joy when son Shane Alexander was born, then to a place deep and binding, a chasm without words, untouched by light.

Shane was placed on a respirator immediately after birth on March 28, 1997. In the flurry to rescue him, there were many questions, which, over time, grew increasingly dire: What is spinal muscular atrophy (SMA)? Will he be in a wheelchair? Will he live?

A week passed, and answers unveiled themselves the way branches are left bare once stripped of dying leaves. Finally only one question remained. Doctors asked Catherine and Scott how long they needed to say goodbye to their son.

A Times story in April 1998 described how the miracle the couple prayed for never came, how the course of a tiny life ran contrary to desperate hope. Even after Shane was removed from the respirator, when Catherine and Scott dressed him in Curious George pajamas and turned on John Lennon’s “Beautiful Boy” in a hospital room lit by candles, they silently prayed for him to breathe.

And even after stillness settled upon Shane, they sang softly to him in broken rhythms, held him in their arms and danced, not knowing what else to do, when to let go. They mourned his death and celebrated a life that in two weeks had changed them forever. Then, just after midnight, they went home, the two of them, and prepared to bury their son.

The waves kept coming, and in time the Studio City couple was lifted again as they embarked on a project to build a park, Shane’s Inspiration, where children with physical disabilities could play with other children, and where adults with disabilities could play with their children or grandchildren.

The city of Los Angeles allocated land near the merry-go-round at Griffith Park. With the help of friends, Catherine and Scott raised more than $400,000 toward an initial goal of $600,000, a bar since raised to nearly $1 million. It has become a full-time endeavor spearheaded by Catherine and her friend Tiffany Harris. They hope to break ground on March 28, 2000, what would have been Shane’s third birthday.

Catherine and Scott were not comfortable with sympathy or notoriety. People would come to them offering help and money, saying, “I don’t know if I could have survived what you have survived.”

“Yes you could,” Scott told them. “You may not believe it, but you could survive. You have no choice.”

They didn’t consider themselves courageous, because there were so many times when they felt weak and tired, unable to sleep or see beyond the night. “You don’t move on,” said Catherine, “you move through.”

Even when they knew the park was more than a dream, when it had become a part of them, a process as involuntary as breathing, what they really wanted, what was deep in their hearts, was simply to be “ordinary parents.”

They suffered two miscarriages by the end of 1997, then took time off to focus on Shane’s Inspiration, to heal. When they felt ready to try again last year, conception, which had occurred so readily in the past, seemed elusive.

Then, one day in February, Catherine was sitting in the waiting room of a doctor’s office reviewing a pamphlet on fertility drugs, when a nurse opened the door with lab results.

She was smiling.

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There was a 1-in-4 chance that this baby, too, would be born with SMA. Scott and Catherine waited the mandatory 10 1/2 weeks for tests. Their prayers were constant: “Please let this baby be healthy.”

As Catherine’s pregnancy progressed, they went for genetics testing that would determine whether the SMA gene was present in the fetus. The night before they expected to hear results, their telephone rang.

“I couldn’t wait to tell you,” the geneticist said. “Everything’s fine.”

Catherine and Scott collapsed on the kitchen floor. “Everything’s fine,” they told each other again and again.

Initially, they didn’t want to know the sex of the baby, but a week after the test results, they couldn’t wait. It was a girl, they were told.

The early months of Catherine’s pregnancy were as tortuous physically, as they were uplifting emotionally. To ease her agony, she began thinking about potential names. Only one emerged quietly to the surface.

She immediately called Scott on his cell phone.

“How about Grace?” she asked.

The word floated upon him like a feather. It was perfect. The past three years had been filled with so much life--tragic and fortuitous. Through Shane’s Inspiration, they had encountered boundless good will, strength and hope.

“It’s been three solid years of grace,” he says. “It’s turned me from a cynic into someone who’s much more positive about our ability to overcome life’s problems.”

He and Catherine have never been victims, he says. They have been witnesses to the spectrum of life, its winding course, its deliverance of joy, pain and, now, grace.

In September, Catherine went to Cedars-Sinai Medical Center for the first time since Shane was born. Her friend Tiffany Harris was in labor. In celebration of the birth of Tiffany and husband Quent Schierenberg’s daughter, Jade Amory, Catherine held the baby, cried tears of joy.

But when she arrived home, it struck her. She had been in the same delivery room where Shane was born. She had seen some of the same faces. For two days, she sobbed inconsolably.

She sees now it was something she had to endure to be fully present for Grace’s arrival. Six weeks later, Catherine went into labor and returned to Cedars. The same doctor who delivered Shane, who delivered Jade, delivered Grace.

Grace Alexandra Williams was born at 6:58 a.m. Oct. 20. For a brief moment after she arrived, there was silence.

“Grace,” Catherine said, “Mommy’s here. Daddy’s here.”

Then came new life’s first sound to the world, a strong, lilting wail.

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In quiet moments, the waves are still. With Grace, Catherine feels possibilities in life she never felt before.

“That’s a huge gift she’s given me,” she says, “to look at her and know that anything is possible.”

Grace’s room once was prepared for Shane. Slowly over time it was dismantled, converted to an office. Now there is another crib, a menagerie of stuffed animals, an angel with Grace’s name on it hanging on the door. There is a picture on the wall of her parents, her brother. In the area around her eyes and nose, their resemblance is unmistakable.

At one point, Scott and Catherine believed themselves to be the givers of life, but they know now it was the other way around. Shane and Grace brought life to them.

“Shane opened our eyes to an inequity,” says Scott. “We were confronted for the first time by the emotion of raising a child in a wheelchair. He made us aware of great need.”

Shane’s legacy will be a park where all children can play. After it is built, Catherine, Scott and Tiffany will help other communities develop their own “boundless parks.” Like their feelings for a son they wish they could hold, it is a lifetime commitment.

At 9 a.m. Dec. 5, they will sponsor the second annual 10-K fund-raiser at Griffith Park. They await the day when they can celebrate the opening of Shane’s Inspiration in the same way they anticipate Grace’s first steps, first words, first birthday.

They will celebrate such monumental occasions in the way of ordinary parents.

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For information about the fund-raiser and Shane’s Inspiration, call (818) 752-5676, or write to Shane’s Inspiration, 4804 Laurel Canyon Blvd., Suite 542, Valley Village, CA 91607.