happened to make the State more money. She did mind waking up with puffy red eyes halfway to conjunctivitis before breakfast. She did mind not being able to talk right when she had plenty to say. She did mind drooling all the time, and sweating all the time; even if the kids at school had been lectured on not making fun, she might have preferred a little regular-kid teasing to the outsized politeness and looking-the-other-way she put up with instead. She got sick of having to pour that water-sugar-and-salt solution into her g-tube every hour and a half, which produced none of the gasping satisfaction she witnessed in her sister after a deep, thirsty quaff of Coke. She got tired of wearing that big black “airway clearance system” vest for fifteen minutes every morning and night, as if bracketing her sleep with two rounds of boxing.
Flicka might have been grateful that the Vest now spared her parents’ uncomfortably intimate double-fisted pounding on her back while astraddle her buttocks. She might have been grateful, too, that they’d given up on the chest drainage sessions that had tyrannized her childhood: the tube worked unpleasantly down her nose, the pump’s sickening gurgle and slurp, the grotesque accumulation of mucus in the waste container; it had always amazed Jackson how much thick, viscous gunk could derive from those two tiny lungs, and though Carol had always dispensed with the effluent with her usual no-nonsense officiousness, he could not have been the only one to have found the gloppy, stringy substance nauseating. But if he himself was grateful that dislodging her congestion had grown less revolting, for Flicka gratitude was a foreign sensation. She suffered so many other annoyances that she simply transferred her vexation to something else: chronic constipation from all those meds, the humiliating enemas.
Moreover, the biggest trigger of a dysautonomic crisis was surely sheer dread that, for fuck’s sake, she was about to have another dysautonomic crisis.
The signs would have been falling into place in his absence, while Carol was making a German chocolate cake to bring to tonight’s feast at the Knackers’. He knew the drill. Flicka had endured more medical indignity by sixteen than most folks abided over a lifetime, and her true nature was stoic. Sure, she grumbled plenty, but if she ever got outright whiny, that was a red flag; “change in personality” and “emotional lability” were textbook indicators of a crisis. The thing was, most kids with Riley-Day – an older tag for familial dysautonomia that sounded like a pop duo who sang perky numbers on Christian radio – would “whine” that their sister was hogging the family computer. But Flicka had an existential streak a mile wide, and her personality never altered as much as all that. Her version of “lability” was a lot harder to take. She would “whine” about the fact that she hated her life and hated her body; about how she had nothing to look forward to besides submitting to more bouts in the hospital, ending up in a wheelchair, and having her whole cornucopia of symptoms – the wild blood pressure fluctuation, the chronic congestion, the lousy balance, the cornea infections, the seizures – get worse. Flopping and perspiring about the kitchen, she’d “whine” that she’d rather be dead. That was rough for any parent to listen to, since the declaration couldn’t be put down to regulation teenage histrionics. She meant it. This wasn’t a kid who “didn’t understand the concept of death,” either – the likes of whom Jackson had never met anyway. Like most children, Flicka understood perfectly well what death was, and on days like this she thought it sounded wonderful.
Sure enough, he could hear the girl’s nasal screech from the back of the house while he was still out on the stoop. (“No, I didn’t wear the Vest, I hate it, I hate everything, all this stuff about how great it is at least to be alive, I don’t know what you see in it!” Brief lulls were doubtless filled in with Carol’s ritual assurance that she shouldn’t talk like that, that “life was a precious gift,” sentimental homilies guaranteed only to further their daughter’s rage.) He was still feeling afloat and unfocused himself; he’d been warned not to drive, and had ignored the injunction. The sedative seemed to have brought on an after-high, for when he’d filled the tank over on Fourth Avenue his chatter with the attendant had been manic even by his own standards.
“Why don’t you just let me cut out? It’s not worth it!” Flicka wailed from the kitchen.
Walking in on this foofaraw confirmed his conviction that, Christ, he’d earned doing one thing for himself, hadn’t he? Just one?
“I don’t want your stupid scrambled eggs!” Flicka was wheezing when her father entered the room. “I don’t want to spend all Saturday afternoon with my speech therapist, and occupational therapist, and physical therapist. I’m going to die anyway, so just let me watch TV! What does it matter?”
Carol had grabbed the girl’s hair and was squeezing more Artificial Tears in her eyes. (One of the first signs of FD, that the baby couldn’t cry, was something of a sick joke; any infant with a future like this had every reason to weep.) As Flicka was rasping, “Just leave me alone! Let me fall apart in peace!” she started to hyperventilate.
Granted, it wasn’t always easy to distinguish the symptoms of FD from the side effects of the meds; nausea, dizziness, tinnitus, canker sores, backaches, headaches, fatigue, flatulence, rashes, and shortness of breath came with both territories. But the nature of this episode grew clearer when in the midst of her gasping Flicka started to retch. The dry heaving was excruciating to watch, somehow more so than before the fundoplication, when she’d have spewed what little she’d ingested of Carol’s unwanted plate of scrambled eggs in a six-foot projectile plume. At least proper vomiting had seemed to offer relief. The retching was ceaseless and unavailing, as if an alien embryo in her guts were clawing its way out.
“It’s a crisis,” Carol told her husband grimly. Most wives would make such a statement in the spirit of hyperbolic melodrama; for Carol, the verdict was coolly clinical. “Thank God you’re back. Hold her.”
Jackson clutched his tiny writhing daughter to his chest. After wrestling with the button and zipper with some difficulty from behind, Carol pulled Flicka’s jeans down, hastily coated her own middle finger with Vaseline, and slipped a tiny tablet the color of marshmallow peanuts as far as she could up her daughter’s ass. Without taking a reading that they didn’t have time for, it was always tricky to discern whether Flicka’s blood pressure was soaring or plummeting, but Carol made an educated guess at low – the girl’s skin was clammy, pale, and cold – and administered a pink tablet of ProAmatine in the same rude fashion. Flicka’s whole digestive system would already have shut down, and even meds administered through her g-tube wouldn’t absorb.
“Now, remember—” said Carol.
“Yeah, yeah, I know,” Jackson interrupted. “We gotta keep her upright for the next three hours.” Carol never gave him any credit. He knew perfectly well that lying down after ProAmatine could send Flicka’s blood pressure from knee-high to through the roof.
All this time, Heather had been mooning on the sidelines looking envious, and envy in these circumstances made Jackson worry that she was far dumber than she tested.
For good measure, Carol inserted yet another tablet of diazepam, and within a few minutes the convulsive retches in his arms spasmed farther apart. Fortunately, Carol had crammed Flicka full of Valium fast enough to avert a full-blown crisis – the human equivalent of a hard-drive crash – which would have sent them straight to New York Methodist. However, the rescue did cost the cake, which was now filling the room with the sharp, not altogether unpleasant smell of charred chocolate.
I apologize for the store-bought cake,” Carol said at the door. “We had a mishap with the home-baked one.”
Carol never used Flicka as an excuse, a discipline Jackson admired. Nor would either of them mention how much they’d be out of pocket for the sitter. Flicka having been volatile, they’d called Wendy Porter, their usual registered nurse, who was FD au courant. Hell, they’d have cancelled altogether if it weren’t for Flicka. “I like Glynis,”
