It had just been a wild hare. Anxious and unable to concentrate from nights spent not sleeping, she’d quietly mumbled to herself “I wish we could just give him a body that actually works.”
They’d never intended for it to go any further than that. It was just going to stay the idle musing of worrying parents who knew so much, yet could do so little for their boy.
Then, the next morning, he’d refused to even touch breakfast, turning his head as soon as the nurse laid the tray on the table. Barnaby had never done such a thing in his life. Even if it was something he didn’t want, he’d always accepted it with a smile out of politeness.
It was the first non-physical sign of just how much the illness had taken away from him… and something in her cracked.
They were both exhausted. Her husband was rubbing aching, tired eyes after staring at coding screens for the entire night, and she had an uncomfortable crick in her neck from being hunched over wiring connections. Their hands shook as they soldered the last casing into place.
But when they were done, a childlike form lay on the table.
They still weren’t intending to use it. It was just something to make them feel better. A little less helpless. A way to at least pretend they’d done something productive after days and nights hearing doctors lay out just how little all the medical aid attempts were doing.
They were at the hospital the next time Barnaby had tried to use his NEXT to regain a little strength, and had lost consciousness for over seven hours as a result when it had gone dormant again.
Tightly holding on to each other’s hand as they looked through the observation window at him sleeping, they glanced at each other, then silently went back to the home laboratory.
The hardest part was assessing time. Barnaby’s health fluctuated and faded with such a mercurial speed that determining what their margin of error was and how wide their window was became more and more difficult. They wanted to give the doctors a chance, give Barnaby a chance, hoped desperately that something new might come along and he might yet be saved in the body he had now.
But as her husband crunched the numbers for the fifth time that week, she could tell by the look on his face that it wasn’t going to be good news. When he’d finished, he sank back in his chair and put a hand over his eyes, and she bit her lip, knowing what was coming.
“Today,” he said softly. “It has to be today.”
They made the caretaking arrangements with the hospital. Both had been active enough in his care that it was, thankfully, deemed unnecessary to assign him home visits by a nurse.
There wouldn’t be any interruptions.
As they waited for the nurses to get him situated as comfortably as possible on a gurney, she nervously fingered the capped syringe she was keeping in her purse. Her hand was trembling. Even though they’d been planning this for weeks, there was something in them both that still balked at hurting their boy.
She kept telling herself they had nothing left to lose. If they failed, he would be no more dead than if they hadn’t tried at all. if they succeeded, it would be worth all the pain.
It didn’t help.