FEBRUARY 2, 2009 / DENHVOY ALVOROD LOCAL CEMETERY

Asher and Vasily's life was fulfilled in Russia - or at least, it was through the eyes of a boy who knew as much about the world as his parents had allowed.

Asher grew into his mother's hopes for him like a lily unfurling for the sun. The check-ups with Giorgi Polzin had dispersed, from once a month, to four times every year. The fractures to his fingers two years ago were the most recent breaks he'd had.

By the time he was on the verge of adolescence, Asher knew as much about his disorder than his mother had. Ekaterina had coped with the distress of her son's condition by distracting herself. Knowledge was the drug on which she always relied for relief. It made her feel stronger, as if she could help Asher by researching osteogenesis imperfecta repeatedly.

The night after Asher's diagnosis - back when he couldn't even hold his head own up - was the only time Ekaterina cried in front of her child, and one of the only times Vasily saw his wife shed tears. But behind a thousand-page scientific research journal, or in the privacy of her office walls, Ekaterina Delrov allowed many more emotional breakdowns. She kept those to herself, like her fears and fatigue. It was a trait she'd picked up in high school; how to appear strong when her world was falling to pieces.

Unbeknownst to either of them, Asher and Ekaterina dealt with the disease very similarly. They did not cry about it, or seek relief in some destructive substance. Both of them preferred to learn about it, rather than be afraid of it. Both thought that knowledge could fix whatever genetic mutation had gone wrong in Asher's body. From the point when he could finally pronounce, spell and use it in a sentence, Asher took learning about osteogenesis imperfecta into his own hands.

He found out: Type I osteogenesis imperfecta was the mildest - and Asher thanked his (not very) lucky stars that he didn't have Type II, which killed most children born with it before six months. He knew his bones were cursed, but at least they weren't crumbling. Vasily had reservations about the content Asher was accessing, but he knew it was better than letting him think he was being killed by the disease.

His father didn't catch Asher's reaction, how despair whispered things to him every time the words genetic, mutation and incurable appeared in the many medical journals he read. Terror, a monster that lurked in the corners of his room at night, took Asher's heart in its claws and squeezed it like sponge. Wringing it out, leaving it dry. Asher felt that sort of fear, every time the twelve-year-old boy read about whom exactly the disease had crippled, broken or killed.

Would he grow up to be another person in that list? Body damaged so brutally that someone felt the need to glorify his disease in cyber-space?

Vasily Delrov only saw his son cry about his disease once - the day Asher was told that he might go deaf in his thirties. There was no sensitive way to break that sort of news to a twelve-year-old boy. His bones were fragile, delicate, and nowhere near strong enough to carry the weight of the world. Asher held in the tears until he got inside the car.

Vasily saw a fragment of his wife's strength in Asher. He pulled himself together quickly, and set about finding the symptoms of hearing loss when they got home. Asher ran inside to his laptop, and Vasily stayed back in the car, heartbroken. He tried to make the highs in Asher's life last as long as he could, but a minute of darkness could wreck years of happiness.

But, minutes of lightness could also leave a lasting effect.

The midnight birthday celebrations - Vasily claimed that Asher's birthday was the split second after midnight, twenty-eighth of February, and the second before 00:00, first of March - when father and son would wait up for the infinitesimal moment when Asher had a birthday on non-Leap-Years.

The minutes after they finished the playhouse they toiled to build while summer's radiance bore down on them; Asher painted the whole thing to look like a robotic house, and loved it even though it gave him splinters.

The chocolate fountain at Vasily's manager's engagement party from which Asher had snuck mouthful after mouthful, only to find a scolding father who secretly gave him more in a cup when his stern manager wasn't looking.

Those moments of normality pushed Asher through life, not letting him sit and fester in the darkness. Insisting that he live even if he was dying inside.

Despite the moments of happiness that Asher managed to catch as they flew by, some days, he needed to talk to someone who understood more than he ever would.

Two days before his thirteenth birthday, Asher Delrov was visiting the smartest person he knew.

"Hey, Mama," he leant his shoulder on the gravestone, like the stiff cobble was actually the warm embrace of his mother, in another world.

Vasily placed another bouquet of lilies over the plaque, and walked to the barren tree some metres away to give Asher some privacy. They'd have their personal time later.

Asher never brought flowers to his mother, because they'd rot and die like everything did. During the funeral, he had given the obligatory white lily to his mother's coffin, because everyone else was doing it. One of the clearest memories Ekaterina had said to him, while coughing up blood that she tried to hide from him, "That's life, Asher. It's unfair, and no-one gets out alive. But you should kick butt while you're here."

Her sickness had been too quick from start to finish. Asher had come home from school one day, proud of the science test for which he had gotten the best marks. Vasily had been holding Ekaterina on the couch, and the little boy didn't notice the footprints of tears that had run down her cheeks. That was the sixth time Vasily had seen his wife cry.

From there, it was a blur of diagnoses, treatment plans and check-ups, and for the first time, Asher watched what had happened to him his whole life happen to someone else. Ekaterina was tacit about what she was going through, but with Asher, she didn't try to hide it.

Asher knew.

He knew what being hooked up to machines felt like, the sympathetic look doctors tried to hide, but failed to conceal, that made her think she was not getting out of this one. He knew, and didn't like it. He felt what he knew his parents must have felt for him, desperation, and despair. Disease was a familiar topic to him; it was death wrapped in an excuse of genetic malfunction.

Asher couldn't help his scientific curiosity. Ekaterina, away from her husband's disapproving eye, would research her disease - with Asher by her side. Like his disease, it was incurable, and would slowly kill her. How slowly, that was the question.

When he was nine years old, Asher found out: not slow enough. And now four years later, Asher was pretending that his mother's gravestone could hug him back, while he cried the tears that he hid from his already-too-heartbroken father.

Two diseases had become closely twisted into his heart, like roots growing down into soft, impressionable soil: one that he had - imperfecta - which would slowly kill his body, and one that his mother left - grief - which would slowly kill his mind.

The question was: how slowly?