In Falling Snow (41 page)

I knew I should do something about Tom; I should leave Royaumont, forget the scholarship, and take Tom home. But he wouldn't come willingly and I wanted the scholarship. I confided in Marjorie, not about the scholarship, but about Tom and what he wanted to do. Her brothers were still home in Canada. Their father wouldn't let them sign up.

“Well, I don't know what I'd do if he were my brother,” Marjorie said. “He was so young when he started but he's older now. You have to let him go, I think. He's just such a lovely boy, Iris.” Marjorie had worked with Tom to prepare one of the wards in the early days. They always seemed to be laughing.

“I've an idea, Iris,” Marjorie said. We were walking along the promenade on the seafront, listening to the gentle waves as they clattered against the shingle, like distant guns now to my ears. It was our last evening in Nice.

“What is it?” I was miserable with trying to work out what I should do. Daddy had been consistently clear that I was making the mistake of my life, and perhaps he'd been right after all.

“What if Tom came to Royaumont?”

“How?”

“Miss Ivens already says he's an honorary woman. What if we gave him a job? He can drive. He can fix cars. He can build. He would be wonderful. I bet Miss Ivens will say yes if she knows it's the difference between keeping you and not.”

“What a wonderful idea, Marjorie,” I said. “And I just know I could convince Tom . . .”

“If you phrase it that we're a bit lost . . .”

“Yes, and what we really need is a man.”

“And one who can build things and fix things.”

“And it has to be a real man.”

“Of course, strong.”

“Courageous . . . Oh Marjorie, this is so perfect.” I hugged her. “Miss Ivens will say yes, I know she will.”

There was a call from Ian Gibson's office asking if Grace could drop down on her way out. She'd planned to work late to finish some reports—David was picking up the kids—so she went immediately. The receptionist buzzed Ian, who came out straightaway.

“Grace, come in,” he said, not smiling. They went into the office and he waited for her to sit down, taking the seat beside her rather than behind the desk. It was the first time she'd seen him looking not quite in control. She was having trouble catching her breath. “I have some worrying test results,” he said. “And I wanted to tell you now rather than wait until you come back with Henry.” He spoke slowly.

Grace could feel the air in the room growing thinner, Ian's voice coming from further away.

“Henry's blood contains high levels of CK,” he said. “Creatine kinase,” he added when he saw she hadn't understood. Grace still didn't understand. “I'm pretty sure Henry has muscular dystrophy.” He paused to let the words go in. “We need to do a muscle biopsy to confirm. But given the symptoms, the blood results, I'm fairly confident that's what we're going to find.”

Grace might not remember CK, but she knew what muscular dystrophy was. The muscles failed to develop properly, causing progressive weakness, especially in the legs. “Are you sure?” she asked.

“Sure enough to tell you. As I say, we'll do a biopsy but that will really just confirm. I think it's Duchenne's.” Duchenne's muscular dystrophy, after Guillaume Duchenne, who first described the symptoms. Funny that she could remember Guillaume Duchenne but not much about the disease he'd named. Duchenne's was the worst one, Grace knew that much.

“Don't they think Duchenne's is inherited?” Grace managed to say, her clinical voice failing her. “That it's an X chromosome thing?”

“Mostly, but not always, and there's no family history.”

Suddenly, Grace wanted to get out of the office. She knew she should be asking questions, finding out more about what it meant, but she just wanted air. It was impolite, it occurred to her, to sit here not speaking, but she couldn't make the words come.

“Grace?” Ian Gibson was saying. She was standing up and heading towards the door. “Grace.”

“Just . . .” She put her hand up in a stop sign. “I just need a minute.” She walked out of the inner office, through reception and into the cold white corridor. Led Zeppelin's “Houses of the Holy” was playing on a radio somewhere. Grace found her way to the car park and the safe refuge of her car. She got into the backseat and lay down and made herself as small as she possibly could.

There was a film they'd watched in medical school, a young man in his late teens who could no longer walk, no longer sit up. He had a soft pale face surrounded by wisps of sandy hair. His head was too big for his neck where the muscles were wasting away. He was in a bed, his big eyes darting from one side of a page to the other in order to read, his head unmoving. He could speak but his speech was slow and a bit fuzzy. Grace wasn't sure if the fuzziness was an effect of drugs or disease. The interviewer asked him how he coped. He said he was hopeful that if he ate better and did more of the exercises he was supposed to do he'd be more well. Even at the time, Grace had seen the awful truth, that this poor boy believed if he ate his greens and did his push-ups he'd stem the tide of disease that in reality would eat his muscles over time no matter what he did. He said he had plans for an art exhibition. There was nothing wrong with his brain. That's the tragedy with DMD—there's no muscle in the brain. But the arms, the legs, the back and the lungs and the heart—they need muscles to keep going. Near the end of the interview, the boy said that no human being should have to live the way he lived. At first Grace thought he must be feeling sorry for himself—and who could blame him—but then he paused. “Not so much for me but for everyone who has to put up with me.” Grace had felt moved that he was most worried about the people around him. Now she wanted to find him, to talk to him, to talk to the future for her own son. But he was probably already dead.

She didn't know how long she stayed in the car. She was shivering uncontrollably although she wasn't cold. She knew she was supposed to be in clinic and for a moment she thought she might do that, it might take her mind off what Ian Gibson had said. But when she went to get up, her legs gave way beneath her. She got back into the car, sat in the driver's seat, still not moving.

Henry's had been the easy birth in its way—she'd been asleep for the duration—and that was the thing she couldn't understand. She would have picked him as the unblemished one, the one unharmed by pregnancy and birth. He was beautiful, perfect. A quiet happy baby. Phil had screamed night after night with colic, and when David had broached the subject of a third baby he told her later that he'd thought she'd say no straightaway. But she was the opposite. She wanted another baby. She was thirty-six; Phil was out of nappies and had stopped crying. Grace had been happiest when she fell pregnant with Henry.

And yet there had been a flawed gene in Henry from conception. The good diet she'd eaten, the exercise classes and, later, the tiny blobs of frozen spinach, the handmade juices, the beef broth, none of it made one whit of difference because Henry had started the first roll of the dice with a faulty gene that would eat away his muscle strength, that would eventually stop him breathing.

Grace knew there was no point thinking this way but she couldn't stop it. She wanted to believe in God so she could scream at him that he was a fucking fucking fuck for doing something like DMD to her son.

It might have been minutes or hours later that she drove home. David had picked up the children as they'd arranged because Grace had been expecting to work late. But Ian Gibson had called him, David said, concerned about Grace. She looked at David and found herself feeling again she couldn't get enough air. She went into the bathroom and closed the door and stayed there until she caught her breath.

She and David couldn't speak freely until the children were asleep. They play-acted normality and Grace was glad for the respite from what she now knew. She lay with Henry until he went to sleep, scooping herself around him in his little bed. He'd insisted on wearing his Superman costume and she didn't object, despite the fact he'd been wearing it all week at day care. As she was getting up, she looked at her small, perfect son and again couldn't believe what Ian Gibson had said to her. She'd never now be able to look at him and not know what she knew.

When she went downstairs, David tried to take her in his arms, but she couldn't cope with his touch and said so. She paced the room. He stood at the kitchen bench. “Ian says he'll need to do another test to confirm,” David said, as if this might give them hope.

“He wouldn't have said anything without being sure. I think that's just to see which one he has. Ian thinks it's Duchenne's. You know what that means, don't you?”

David nodded slowly, folded his arms. “We'll get through this, Grace,” he said. He looked as if he might cry. “Where did you go tonight?”

“Nowhere. I just needed a bit of time,” she said.

“You didn't even call,” he said.

“What would you have done?”

“Come and got you.”

“Why?” She kept moving around the room, couldn't stop.

“You were upset.”

“And you coming and getting me would stop me from being upset?” She found herself feeling inexplicably angry.

“No, I didn't mean that. But we're together in this.”

“Are we? You made the appointment, you kept worrying at it.”

“Are you saying he wouldn't have DMD if I hadn't wanted to see Ian?”

“No.” Grace sealed her lips. Yes, she wanted to say. Yes, if we hadn't gone to see Ian, Henry wouldn't have DMD, or we wouldn't know. And that would be better. But she knew this was ridiculous.

He walked over to her. “You want someone to blame. So do I. You wouldn't wish this on your worst enemy. Oh Grace.” He was crying now.

She took a step back. “I just don't like people round me when I'm upset,” she said.

“I'm not people. I'm your husband.”

“No people,” she said. “It's not personal.”

“What is it with you? It's all so controlled and ordered. I would have called you first thing. I would have come to you so we could go through it together.”

“We're different, that's all.” Grace knew if she let David hold her she would lose it completely. She didn't want that. She wanted to be strong and vigilant for Henry, who needed his mother now more than ever.

Janis stopped by at six the next morning. David had phoned her the night before when he hadn't known where Grace was.

“I'm fine,” Grace said.

“You're coming with me,” Janis said. “Put on your runners. Moving helps.”

“No, really,” Grace said, wishing Janis would leave.

“Yes, really.” Janis said, taking Grace's runners from the shoe basket at the door, waving to David as she led Grace out to the stairs.

They ran along Given Terrace to Lang Park. Janis was right. Moving helped. It loosened Grace up enough to start to put words around what she'd been through. “David thinks I'm an ice maiden,” she said.

“No, he doesn't,” Janis said. “He was just worried about you.”

“I haven't cried. I can't.”

“You will.”

“I'm not sure I even believe it yet.”

“It will come. We're going to do this every day we're both free while you're getting used to believing.”

“It wasn't even a surprise. It was like I've known all along this is coming. Like there's been something waiting for me, something I knew but didn't know. And now I feel guilty we didn't act sooner.”

They stopped at the war memorial park on Enoggera Terrace. The sun was rising over the city, light falling onto the stone monument at the centre of the park. Grace's eyes found the long list of names. She'd never noticed them before.

“It's not going to make any difference,” Janis said, “and your guilt won't help. Believe me, I know.”

Grace shook her head. “When Ryan . . . Did you feel you'd never . . . Did it get better?”

Janis's son had died at eighteen. He'd overdosed on heroin at the end of a journey away from his family. He was in Sydney at the time. Janis had been informed of his death by the police. She hadn't heard from him in six months. “Of course. And this is already a grief for you. You'll mourn the loss of an able son, of his future.” Grace had started crying now, softly at first and then sobbing. Janis rubbed her back. “But it will pass. It really will. The only thing I learned was this. I couldn't solve the problem of Ryan's death or his use of drugs or his anger at me. All I could do was sit up in bed in the morning and put one foot down on the floor and then the other. Some days that was it. Some days I didn't even manage that.