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02 | future

AUGUST 1,1996 / DENHVOY ALVOROD, FIRST STEPS PAEDIATRIC CLINIC

Ekaterina Delrov was no fool.

The staunch new mother had an intelligence quotient of 158 (still not high enough, in her opinion) and more knowledge under her belt than there were stars in the sky. When she woke up that morning, groggy-eyed and hoarse in her throat, Ekaterina would have traded every shred of knowledge she had, every milestone she had passed, everything, for her baby to be okay.

A creeping suspicion had tiptoed into Ekaterina's over-active mind two weeks ago, when, at early months of age, Asher had developed a blue tint in the whites of his eyes. Against his hazel irises, the colours clashed horribly with each other - both beautiful on their own, but when mixed, left a bitter worry in Ekaterina's mouth.

Mastering the hang of sitting up by himself was long overdue, though every textbook on birth and childcare, every internet blog penned by stay-at-home mothers had stressed that babies developed at their own paces.

Still, something felt wrong.

Call it a mother's instinct, call it paranoia, but Ekaterina Delrov had babysat her niece, Aria, when she was younger than Asher, and her other nieces and nephews. All of them had been relatively active by six months. The problem wasn't that Asher didn't want to crawl around - he could be seen stretching his hands and legs like he wanted to move - but was, rather, that he couldn't.

"Mrs. Delrov," Asher's paediatrician was finishing up a session with another mother when Ekaterina and Vasily walked into the waiting room. "Asher's check-up is not for another week or so."

Tentatively, with shaking hands that didn't deserve being trusted with a child, Ekaterina passed her son to her husband. Vasily was the best father, in Ekaterina's opinion. He knew exactly how to rock Asher when he was fussing, talked to him like Asher understood and felt confident with his parenting skills.

Ekaterina still thought that she could handle machinery better than she could handle children. But Asher was hers. And she would fight for him.

In hushed tones - she had not shared any of her suspicions with her husband, in case it was nothing - Ekaterina murmured, "I think something is wrong with Asher."

Concern fell on the doctor's face, and she opened the door to her examination room, "Come in."

It was the same procedure Asher had gone through for his first check-up, at the hospital when he was four days old, and when he was a month old, here. Dr. Walsky measured his height, by rolling a measuring tape across the baby mattress where Asher lay, clutching his mouth and giggling.

Ekaterina noted that by the day, he seemed more and more like a younger Vasily - happy to the point of it being slightly annoying, amused by everything and determined. Very determined.

Asher cried a little in the unfamiliar arms of Dr. Walsky, so the paediatrician gave Asher back to Ekaterina after the routine measurements had been taken.

A blood sample was taken - Asher cried for three minutes after, but settled down when Vasily sang a lullaby - and sent to be tested. In eight days, Asher would be back here for his six-month vaccinations, but Ekaterina's nerves would have been frayed to the point of insanity if she had to wait eight days to guarantee her baby's health - it was a maddening kind of torture even waiting for the blood results to come back.

In fact, even now, she couldn't guarantee it. It was torture, wanting nothing but a bright future and love for her child, but knowing that she couldn't do anything to ensure it.

The day after Asher was born, when Ekaterina was feeling up to eating more than cheap packaged peanuts from a hospital vending machine, something had changed drastically in the way she lived.

It was too sudden to be logical, for sure, but over the week, then over the month, day by repetitive day, she stopped working at the designs for her model of prosthetic limbs. Asher was fighting her beloved science for her heart, and won.

The little Delrov boy with tiny fingers and big, troubled eyes replaced her future of designing patents, speaking at bio-conferences and engineering the future of bionics with days playing tag in the sun, sitting through school plays and high school graduation.

Ekaterina had completely changed, she knew it and felt like crying. With what emotion, she wasn't sure yet. Even through the overwhelming joy of motherhood, she could admit that her future had become limited with the birth of her son.

The stars used to be her limit, and now, it seemed her future would only stretch as high as the roof of their suburban bungalow. Twenty-year-old Ekaterina Delrov, waist-deep in university exams and double degrees, would never have swapped her potential in for a life of cooking, cleaning and driving children around.

She had wanted so much more than that.

Ekaterina hugged the squirming boy to her chest, and felt him coo - as close as he could come to laughing - and dribble on her shirt. Her bundle of joy had taken so much from her, and didn't even know it.

But Asher Delrov was, she decided there and then, completely worth it; in his tinted eyes and squealing laughs and bibs with toy trains on them. For everything she sacrificed, she gained more in happiness. Her future was inextricably tied into what happened to her son. She accepted that fate with a strong, tender resolve.

Ekaterina could only hope that it would be purely good things that befell him. For his sake, and hers.

__________

After hours of waiting for the results of Asher's DNA test, delicately holding her baby like the wrong touch could kill him, Ekaterina's composure was stretched to a clear film, seconds away from tearing.

Vasily rubbed comforting strokes on the back of her hand with his thumb, though the gesture only scooped out mere pails of water from a massive, growing tidal wave of worry. When Dr. Walsky stepped back into the room, the grave look on her face pushed Ekaterina close to tears.

Inside the study, with a sleeping Asher drooling on her shoulder, Ekaterina said, "It's a disorder, isn't it?"

Her field of expertise was prosthesis and bionics, not medicine. But from one doctor to another, there were no secrets; Ekaterina could see that.

Dr. Walsky's mouth was set firm, and she swallowed, "Yes. Osteogenesis imperfecta."

Ekaterina knew clearly Vasily didn't have a clue what that was, but she did know that the second she let despair onto her face, he would notice. He was intelligent beyond words, beyond study. He would realise what it meant for their child, if she couldn't control herself.

Her hands tightened imperceptibly on Asher's torso, and the simple task of keeping a blank face has never been harder, "Which type?"

"One," Dr. Walsky said. Vasily grew worried at the tension in his wife's voice, but saw relief wash over her body. He allowed himself to relax.

Dr. Walsky clasped her hands and turned to him, "Mr. Delrov, osteogenesis imperfecta is a bone disease. The type your son has, type one, is not as debilitating or fatal as some other variants. If he is healthy, he'll never need a wheelchair or physical therapy."

Ekaterina remembered something from one of her university genetics papers, and hereditary disorders, "It's inherited. One of us gave it to Asher."

"Technically possible," Dr. Walsky agreed. "Or the gene responsible for normal collagen production may have mutated in fertilisation. Do either of your families have a history of the disease?"

The parents shook their heads.

She continued, "Then, considering the allele that causes imperfecta is dominant, it is more likely a mutation randomly occurred in meiosis. It's not your fault. There's no choice in the matter, like there's no choice in picking the colour of their eyes."

Ekaterina put her head on Vasily's shoulder, wanting all the stress and panic to roll away.

Numbly, she argued, "It's not like choosing their eye colour."

Dr. Walsky pulled out a blank sheet of lined paper from her desk drawer and began writing. "Here are some clinics that specialise in osteology. And . . . I think I have a few pamphlets somewhere around here. Luckily for you, type one imperfecta typically sees most of the broken bones before adolescence. I'd say once your son is around fifteen, he'll have a fairly normal life."

"Why fifteen?" Vasily asked.

"Children's bodies are incredibly malleable. In fact, Asher has around three hundred bones in his body right now, which will fuse to the standard two-hundred and six as he ages. When your boy goes through puberty, his bones will further stiffen and become stronger, thus hopefully be less likely to break."

He nodded, processing the information. "Right."

Asher started to stir, and Dr. Walsky sighed, "I have another appointment now. I'm very sorry, but I'll give you my fax, if you have to contact me after hours, or you can just pop in to the clinic."

Vasily took Asher from Ekaterina, and said politely, "Thank you. We'll pay for the hours, there-"

"Oh no," Dr. Walsky waved her hands, "You don't owe me anything. I'm very sorry for Asher, and you lovely people. Life will be hard for you from now."

Ekaterina held onto her composure past the waiting foyer, past the carpark and all the way home.

It was only when she crossed the threshold of Asher's room, and laid him extremely gently to sleep, did she lift the floodgates. Vasily was at her side before the first tear fell, and holding her head into his chest. He didn't really know what to say, because his wife was the one who knew the most in their relationship.

Vasily comforted without words, holding Ekaterina up until the sobs had released their hold on his wife. Osteo-whatever-you-call-it was obviously a serious condition, and his wife had all the rights to cry about it.

Ekaterina mumbled something vaguely like, "my fault - inherited - no future - easy to hurt -maybe disabled," punctuated by hysterical sobs. If Vasily knew exactly what osteogenesis imperfecta was, he might have cried for their son's fractured future as well.

But in that moment, already with arms full of sorrow and a heart full of despair, Vasily Delrov was glad he didn't know.



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