Always in Their Heart

In all ways, a child was expected--awaited. The roots of their lives had grown to a place deep and firm, where the importance of creating new life lies. Catherine Curry-Williams was wed in antique-white satin, and Scott Williams wore a Scottish kilt. Their honeymoon in Italy was timed to facilitate conception.

Catherine, 39, had been married before but during that 10-year relationship never considered having children. It didn’t become important to her until she was divorced, and her friendship with Scott grew into something more, into what seems now like everything more.

She is an actor, but acting has never been enough. She is an artisan / entrepreneur, but that, too, was not enough. She helped found and develop a recording company, Higher Octave Music, from her garage. In time, none of it was enough.

For Scott, 37, writer and story editor for the television series “Brooklyn South,” family has always been important, but, still, he approached parenthood with the uncertainty that comes from realizing how much of his life had been spent parenting himself, wandering in search of his own path.

“I’ve always been a seeker,” he says, “searching for a higher meaning of what I might be capable of and what my place in the world is. Never, before I met Catherine, did I have such a full vision or a better idea of what my place in the world is. Before I met Catherine, I had no idea.”

They found a place in the world and in their hearts to start a family. Everything went as expected, almost as if they were in control of such things. By the time they returned from Italy to their home in the L.A. community of Valley Village, Catherine was pregnant.

What was not expected was a son. Branching off from their family trees, from Scott’s sister and Catherine’s three sisters were only girls--six in all. So word of a boy traveled quickly, and Shane Alexander Williams became, says Scott, “the prince among a string of princesses.”

Also unexpected was Shane’s stillness and the new focus their lives would soon take.

Throughout pregnancy, Catherine’s and Scott’s spirits soared each time they heard their son’s heartbeat at the doctor’s office. They were enthralled, peering at his movements on the ultrasound screen. His first kick was an unmistakable sharp jolt as Catherine stood in the kitchen on Thanksgiving Day, 1996.

Spirits soared ever higher on March 28 of last year, Good Friday, when Shane was born at Cedars-Sinai Medical Center. But there, then, was his stillness. Scott was told to cut the umbilical cord quickly. They had planned for Catherine to hold the baby first, and the hurried pace was unsettling. The doctor placed the baby on a table and gently shook him. “Come on Shane. Come on Shane. You can do it. Breathe.”

Suddenly a neonatal intensive care team rushed in, and time seemed frozen in a flurry of movement and urgency. Tears of joy had not yet dried before the bottom fell out, and from the heights Catherine and Scott had soared, there was great distance to fall.

Shane was rigid and bruised, as he lay on a gurney, hooked up to a respirator. Doctors could only say that his condition was serious. There were more questions than answers: What was happening? How could this happen? Catherine had felt less movement during her last month of pregnancy, but the ultrasound hadn’t revealed any problems.

Doctors suspect now that that is when the spinal muscular atrophy (SMA) set in.

It seemed like a cruel, terrible dream, but then Catherine and Scott saw the sadness on the faces of relatives and their embracing circle of friends.

“We were so in shock,” Scott says, “but when we saw their expressions, we knew we weren’t dreaming.”

That night, the two of them curled up together in a hospital bed, afraid to think or speak, silently holding on.

During Catherine’s pregnancy, Scott would sometimes sing to his unborn son, and one of the images he held of fatherhood was the day he would dance with Shane. When they were told Shane was paralyzed, unable to breathe on his own, Scott felt a familiar dark fear, which he has never understood. To see a child in a wheelchair is a stab to his heart. As hard as he tried to push it away, the thought entered his mind: “Maybe, he should go rather than live that way.”

But then came reason.

“If he could begin to breathe on his own, if he could digest and swallow and do things on his own but was paralyzed, we’d bring him home. We’d build [wheelchair] ramps. We’d do whatever we needed to do for Shane,” Scott says. “As long as there was hope, we would keep him on the respirator; and if he couldn’t walk, I would adjust my beliefs around that. We would work it out.”

The doctors’ hope lasted a week. Catherine’s and Scott’s lasted all 14 days of Shane’s life.

They had never heard of SMA. And they didn’t know how to answer when asked how much time they would need before taking Shane off the respirator. It was one of many questions with no right answers.

“A week?” they asked.

And so it was. The life they had envisioned with Shane was whittled to seven more days. They lived at the hospital, hoping for a miracle.

From the moment he was born, Catherine fell in love with him. In his stillness and despite the tubes that stood between them, the machines that breathed for him, love flowed peacefully from her heart.

“I loved him for whatever was going to be,” she says.

She lowered her head to Shane and spoke to him in baby talk without crying. “Hi, Shane. It’s Mommy. You’re beautiful, and I love you.”

For Scott, it was more difficult. “It was almost like I couldn’t get close to him. I needed a visit from our minister to kick me in the butt. The first night, I took no pictures, I took no video. I didn’t know how to love him. Our minister sat down with me and said, ‘He needs you,’ and that saved me, because if I hadn’t opened my heart to him and loved him, I would have lost so much. I would have missed so much.”

How does one let go of a dying child? How do you say goodbye?

“One day I had a talk with him,” Catherine says. “I held him in my arms. I was going to let him go, let him know that he didn’t have to be here for me, because he was holding on for me. He opened his eyes and looked at me. The other times he never would quite look at me. I think he was afraid I wasn’t going to let him go, and he knew he was going.”

Throughout his 14 days, Shane’s eyes spoke to them, Scott says. First, there seemed to be a question: “Why?” Then, “It’s OK.” And, finally, “I’m ready.”

A nurse brought Shane out of the neonatal intensive care unit at 10 p.m. Scott and Catherine had prepared a room with soft lights, music. They held him as the nurse took him off the respirator, then dressed him in a Curious George nightgown.

It was the first time they had held him without the tubes and equipment standing in the way. It was their first unobstructed view of his face since he was put on the respirator. And even then, they held hope.

“Wouldn’t it be something,” they thought, “if he started to breathe.”

They held him, and no miracle came. Within 10 minutes, he lifted his eyes and seemed to stare into the distance. Then he was gone. And they held him some more.

They listened to John Lennon’s “Beautiful Boy.” Scott held him close, swayed slowly, dancing with his son. Just before midnight, they took him out of his pajamas. They placed his hat in a plastic bag, gathered his things, and they went home. From time to time, they would hold his hat to their faces and try to remember his smell. In time, that too was lost.

In 14 days, their lives were forever changed. Shane’s life, they know, was a blessing, but there are times when they think of him and their arms feel unbearably empty.

*

A year later, the crib still stands in the corner of Shane’s room. Three weeks ago, Catherine suffered a miscarriage, the second since Shane’s death. Maybe, she told Scott, it was time to take the crib down.

“I thought that would be too final,” he says. “Besides, it’s here and it’s up for when Shane’s brothers or sisters show up.”

For the past year, Catherine has taken naps in the room and has written poems and letters to Shane. Together with letters from friends and family, she hopes to publish a book to help others begin to heal from such loss.

In one letter from a friend who also lost a child were the words, “I chose life.” The words have stayed with Catherine.

“She guided me through a place where I thought I was going to die, because that’s how you feel, like you’re going to die, and a part of me has died. . . . I love life, but I’m sad forever with the loss of Shane, and I have strength forever from the loss of Shane.”

For Scott, Shane’s passing brought an underlying strength and understanding. “It was like there was nothing left to ever fear again.”

Shane’s room is not a shrine. Although the crib still stands, if the time comes when it helps to take it down, they will do it and whatever else is necessary to heal.

And that is why they want to build a park. Had Shane lived, he would have been in a wheelchair. Shane’s Inspiration will be a park designed with a playground to accommodate children with physical disabilities, so they can play with each other and with other children.

It will be patterned after a playground in Connecticut known as Jonathan’s Dream. On Thursday, Scott and Catherine will host a “dreaming and design party” at Cedars-Sinai, where children with physical disabilities will help create plans for the playground.

For Scott, it will be painful seeing the children, many of them in wheelchairs. Yet he knows they will help him heal.

“Catherine, in spearheading Shane’s Inspiration, has really reminded me of what I used to know, which is if you feel afraid, to extend yourself and try to get something done. If you’re afraid to raise your hand and try to answer the question, then you must absolutely raise your hand and try to answer the question.”

It is the first step down a long road. They will need to find donations starting with two acres of land, extending to building supplies, construction services, trees, printing. They will need to raise an estimated $600,000 and enlist volunteers.

Like much of their lives now, this is something they say they must do. It is a massive undertaking that they plan to take one day and one small step at a time.

They have learned that sometimes they will soar, but sometimes they must climb, one reach and one grip after another. Then, if they don’t tumble back to the bottom, or even if they do, they must catch their wind and reach and grip again.

Until once again, they may soar.

* For information about Shane’s Inspiration, call Catherine Curry-Williams or Tiffany Harris at (310) 588-5529, or write Shane’s Inspiration, 4804 Laurel Canyon Blvd., No. 542, Valley Village, CA 91607.