#slaps harder when you're on 5 different meds

[scribeofmorpheus]

Counterpart [4/5]

Pairing: Bucky x Reader x Framework!Steve

Series Masterlist | Main Masterlist | Words: 5k

A/N: When Nat went underground, instead of dying her hair blonde like in IW, she dyed it black. I had fun with the idea of Nat and Pietro and Bucky forming this unconventional family of sorts, and I loved playing with the idea that Sam and Carol were old friends in the framework, though tbh, I don’t really know where her framework arc might lead. I will have to do a second pass proofread but anyway...

Note: There’s a Framework centric spin-off in the WIP tank!

Warnings: This chapter contains depictions and mentions of alcoholism, language, violence, etc. It’s a dark series, expect a darker take.

CHAPTER FOUR: TWO HALVES

~Canada, The Refuge

The sound of birds chirping outside his window stirred him from his slumber. Bucky was still groggy from sleep, rubbing the remnants of unconsciousness from his eyes with the pads of his flesh fingers. He yawned awake, sitting up from under the covers of the double bed. Glancing at the clock, he noted it was 6 am.

"72 hours," he reminded himself as got up from the bed and walked to the closet, a watch materialising on his wrist, a timer counting down.

"Thanks, Friday," he looked to the ceiling.

There was no reply. Only the sound of wind rustling through the blinds.

While digging through the closet, he was surprised to find several women's clothes hanging next to his. Choosing to ignore that red flag, he reached for a long-sleeved shirt on the rack and noticed his metal arm was a different colour than the usual chrome-blue and gold. This one was red, white and blue.

Cap's colours, he internally pointed out.

A canary emblem in place of the Russian star he had once sported.

"What the?" He glanced at the etched bird using the door fitted mirror beside him. When his eyes looked up to inspect his face, he was greeted by a head of short hair, shaven at the sides. He would have looked military if not for his medium length stubble. He ran a hand through his spikey hair, the brush of it against the metal feeling unfamiliar, "Is this pomade?"

As soon as his hand fell from the trailed paths his fingers had parted through his styled hair, a woman's voice spoke out dotingly, "Morning, Soldat."

The woman's Russian accent was faded but present, she sounded almost like...

"Nat?" Bucky swung around.

She tilted her head to the side. Her hair was longer, darker, a charcoal blackness that absorbed the light. Her face marked by an imposing lateral scar running across the length it, partially healed like a botched brazing job. She looked different but it was indeed her.

"Nat?" She laughed awkwardly. "Not Talia?" She shrugged as she walked over. "Semantics." Her gaze running across his exposed chest with shameless desire.

"Ugh, Nat- Talia, what are you?" Bucky tried to use the closet door to hide his body.

Natasha laughed again as though he were being silly, "You're acting weird this morning. When you're done being all modest, come down to the kitchen so we can start making breakfast for the kids."

Bucky's eyes nearly bulged out of their sockets, "Kids?"

It was then that he noticed the couple’s photo of him and Nat on the nightstand, coupled with Nat's flirty behaviour, the double bed and the shared closet, everything finally made sense. And now his stomach was doing summersaults.

"Kids?" Bucky said again as he stared at Natasha with his mouth agape. "Nat… Uhh, Talia."

"You can call me Nat if it's suddenly easier for you, liybimaya."

Bucky's neck reclined back as if those words had slapped him, "My love...?"

"Yes?"

"What is- Never mind… Um, do you know how to get in contact with Shield?"

"James, I thought we agreed to let that go. We have enough responsibilities with the kids as it is." Natasha pointed to the portrait style picture hung up on the wall.

Bucky peered at the sixteen by twenty inch photograph. In the forefront was a group of kids of all shapes and sizes, seated on two rows of benches, wearing clashing colours and sporting wide grins as they looked out at the camera. Natasha, Pietro, Bucky and a scary, muscly woman stood behind them. Pietro had thrown up an 'L' sign behind the other Bucky's face, his cheek lines prominent in an obvious laughing position while Natasha had pressed her face between two young children, one of them sticking out their tongue playfully.

Underneath the portrait was an engraving on a brass plate: Second Chance, Home for the Displaced Children of Sokovia, 2017.

"Oh, those kids," Bucky sighed inaudibly, relief hitting him like a wave of ice-water. When he turned back to answer the raven-haired woman blinking rapidly his way, he almost felt sorry for her. Even if she wasn't real to him, she was very much real in her own right, and this very real person had just lost the man she shared a life with. What was worse was that she didn't realise it yet.

"Right, of course, how silly of me to forget about that." Bucky's lips wound up in a corkscrew motion as he pulled his shirt over his head. "Okay, then do you know how to get in contact with Fury?"

"What is a 'Fury'?"

Bucky's eyes rolled in the back of his head, "A figment of my imagination apparently. How about Sam Wilson?"

"Sam… Wilson?" Her lips upturned in a half-moon. "Is he someone from your Shield days? The name is familiar…"

"Uhh, yeah, something like that."

Natasha frowned, "What's really going on with you? You're acting strange this morning. This isn't because of the news last night is it?"

"News?"

"That Hydra captured the Iron-Maiden?” Natasha patted his chest. “Pepper is stubborn, she won't talk, you can relax. We're safe as houses as long as we stay across the border." She left the bedroom as Bucky pulled on his jeans.

Jogging after her, he spotted another framed photograph of a younger version of him shaking hands with someone who looked presidential hanging on the Livingroom walls.

"Hurry up Soldat, these potatoes won't peel themselves."

"I'll be right there Na- Talia!" Bucky searched the large living space for a computer or electronic device, he needed to get familiar with this world before he could make any efforts to find Y/N.

After he had moved some couch cushions and disorganised several drawers, Natasha came back into the room, peeling knife in hand.

"James? What are you looking for?"

"The… remote?" His voice went squeaky. “I wanted to check the news updates.”

Natasha brushed the edges of her fringe away from her eyes as she blinked rapidly again, "James the kids lost that days ago. We sent Pietro to buy a new one while on his supply run." She peered at him, folding her arms defensively. "Are you sure everything is fine?"

Bucky exhaled, moving closer to Natasha so he could look her earnestly in the eye, "No, it's not."

Her mouth fell, "What's the matter, liybimaya?"

Bucky glowered briefly, "A friend of mine is in danger, a Shield agent. I need to help her before it's too late, but to do that I need to find her. Sam Wilson was… her contact. If I find him, I can find her."

"You've never mentioned this before..." Natasha rubbed his metal arm with her free hand. "The tablet is in the bedroom, you can search about your friend."

"Thank you!" Bucky buzzed with energy, teetering in front of Natasha indecisively, unsure of what their dynamic was. He settled for kissing her on the forehead, awkwardly.

"You're… welcome…?" She watched him jog back into their shared bedroom, her fingers spinning the peeling knife with great skill.

Bucky fished out the tablet, dismayed to find it password protected, "Shit!" He leaned his head in his hand as he thought of possible password combinations. "Okay, let's try my birthday."

The screen remained locked, a message notifying him he had two more chances.

"Damn it! If I'm with Shield in this universe, maybe I just got the format wrong..."

Bucky typed his birthday in the American format.

The screen was still locked.

"It can't be Y/N's birthday because this world's Bucky probably never met her…" Bucky drummed his fingers against his temple, his eyes widening when he punched in another set of numbers.

The screen unlocked.

"Curious..." Bucky thought out loud before opening up a search engine.

When he searched for the name: Y/N Y/L/N, he was perplexed when nothing came up, instead, there was a small 'i' icon at the edge of the screen that suggested: "Did you mean Y/N Rogers?"

Bucky pressed his lips into a white slash, his neck turning stiff as his finger hesitated above the red highlighted words. After taking a moment to gather himself, Bucky's metal finger tapped on the link swiftly, the metal colliding with the glass harder than he intended.

A news headline popped up and Bucky read the words, keeping pace with the speed of the scrolling script, "Android Ensures New Yorkers Sleep Safer. Hydra's top of the line security android, Spectre, successfully apprehended and pacified the Iron Maiden's (Virginia 'Pepper' Potts) terrorist cell with record low losses. Steve Rogers and his team (comprising of veteran Hydra officers Clint Barton and Y/N Rogers) were present at the sight, providing ground support and med-evac assistance. This signifies a new milestone in overseeing Director Alexander Pierce's vision for a safer, brighter world under Hydra's protective governance.”

Bucky's molars strained from the stress of his compressed jaw, memories of Alexander Pierce and the mind splitting brain-washing sessions made his blood boil. Shaking his head, which felt odd considering his hair didn't sway into his eyes, Bucky continued scrolling through other articles.

"Power couple of the century?" he retorted sarcastically as the picture of Steve and Y/N dressed in wedding attire mocked him. Their happy faces a punch to the gut. How could he feel jealous, angry and mournful at both his best friend and his girlfriend all at once?

Bucky's metal arm propelled the tablet like a boomerang at the wall, only it never reached it.

"I leave for two days and you return to your old brooding self, smashing furniture like we can afford it?" Pietro tossed the tablet in the air with a boyish grin on his face. "Come, friend, you better not let Talia see those tight eyebrows, huh." He flashed over to the dresser and back, tablet no longer in his hand as he patted Bucky on the back. "We can't keep reminding you that it's not your fault Steve was awoken by the tentacle crazies. What could you do, huh? You were a popsicle stick for almost a hundred years. A hundred years!"

Bucky felt his anger lose its hold on him, for a moment he had forgotten everything he was feeling and seeing wasn't real. Somehow having Pietro sit beside him, treating him like a friend, made that all clear again because Bucky had never met Pietro, he had only ever seen pictures of him hanging in Wanda's room, his very presence was the stark jolt of surrealism he needed to remind himself of why he was here.

"You're right," Bucky said as he rose from the bed and retrieved the tablet.

"Oh, hey, hey, hey now," Pietro held his palms up at Bucky. "You aren't planning to-" he made a throwing gesture at the wall.

Bucky's cheek lifted up as he returned a calming half-smile, "Don't worry, I'm not going to throw anymore furniture."

Pietro let out a shaky laugh, hands placed on his hips as his cheeks inflated from a deep exhale, "Good, because I broke the other one and we don't want to see Talia get mad again."

"Err, right. That would be…" Bucky pressed the 'e' at the end of his sentence as Pietro looked on with buggy eyes. "…Bad?"

Pietro nodded in agreement.

"Oh, did you remember to get the replacement remote?" Bucky asked as he typed in Sam's name into the search engine.

Pietro smacked his thigh with the underside of his hand, "I knew I forgot something. Don't tell Talia I was here, I'll go pick it up right now."

Pietro flashed out of the space in a fraction of a second, residual wind from his velocity drying out Bucky's eyeballs.

"Jesus," Bucky whispered when he read the information packet on Sam.

 ~Sam's Homestead, Missouri

Sam was rudely awoken by his loud alarm clock that sounded more like a fire alarm than a soothing melody. He smashed the digital clock as he fumbled with his sheets. His breath tasted of something foul, like stagnant bile, and his head pounded like a marching band had just traipsed across his synapses, a throbbing sensation pulsing at his temples.

When his eyes finally opened he was horrified by the disastrous state of his avatar's home. Clothes were piled on the floor, blinds shut, several cans and bottles littering the space, filling the air with a stale rancid smell of sweat, malt and sick.

He glanced down at his vest and noticed the vomit stains, "Jesus Christ."

Sam groaned as he motioned to sit up from the bed. However, with his balance out of whack, he tumbled onto the floor, face-first into a pile of unwashed slacks that made him retch.

"What the fuck?" He looked down at his feet and noticed he only had the one leg. The other was amputated at the knee leaving behind a mangled scar and a phantom pain that his conscious mind refused to reconcile since the real version of him still had control of both his legs, submerged in a tank underwater. "I didn't see this comin’."

Sam rolled his eyes as he hoisted himself back onto the bed and looked around for a pair of crutches, reaching under the bed instinctively, he was pleasantly amazed to find them there. "Let’s try this again."

He picked himself up on one leg, hobbling about on his crutches that got tangled with all the clutter on his way out of the room.

"Hello?" Sam called out into the dusty, humid house but there was no reply, only dead silence and the grinding of a fan in need of oiling. "Man, this is turning out to be one hell of a bad day."

A stopwatch manifested on his wrist, the hours counting down. Sam pulled his head back, eyes searching for some kind of sign in place of the water-stained ceiling, "Friday, I need to get in touch with Bucky, know how I can do that?"

Silence.

"Yeah, figures."

When he got to the kitchen he saw a note scribbled on a piece of stationery: 'There's some clean laundry in the dryer. I restocked your fridge. Remember: one day at a time. S.'

"S? Who the hell is S?" He complained, turning on his three legs to get a feel for the room. A wistful sigh filling the emptiness.

A gurgling noise rumbled from his stomach, the headache that most likely succeeded his avatar's heavy night of drinking was undoubtedly the cause. Sam tried to clear his throat and rid the taste of fermented wheat from his tongue and teeth, but it didn't help much, It only made him realise how desperate he was for a good shower and a bottle of mouthwash.

He set the rusty coffee pot to brew, deciding the metal tang it would adopt would only be a trick of the senses and hopefully not carry any lasting side effects. He cracked open a window, letting the smell of conifers and rain unclog his sinuses. He then clomped his way down to the bathroom and ran himself a bath after he figured showering would be more of a challenge given his new-old condition.

It bothered him more that he could still feel his leg. It was so surreal to look down and see it gone every time. The irritation digging into his under-arms from the crutches was a psychological reminder of the harsh reality he was about to be subjected to in this world.

After brushing his teeth and changing into new clothes, which required some tactful manoeuvring, Sam looked around for any electronic device that connected to the internet.

"Bingo!" He cheered as he saw a tablet stuffed between two couch cushions. There was no password protection on the device. "Gee, I guess I got nothin' to hide huh? Well if that's the case..." Sam typed his name into the search engine and regretted it immediately after he read the first few headlines: 'Reckless Pilot Destroys Multi-Million Dollar Flight Suit; Drunk, Dishonourably Discharged; Sam Wilson's Vet Clinic Foreclosure; Disgraced Pilot Flees to the Hills.'

"Well, this is depressing," Sam threw the tablet on the couch, opting to switch on the news channel instead. As he rifled through the strange house, the news reporter filled him in on whatever passed for news in this new, frightening world.

"Eyewitnesses report of seeing a strange blue and white streak making its way across Europe earlier this week. Hydra enforcements remind all citizens to call the subservient prevention hotline if they see any person or persons acting suspiciously," the reporter said.

Sam guffawed as he flipped through old photo albums, "Oh yeah, scare the little guy into giving up his neighbour… real patriotic."

"In other news, Hydra's defence android, dubbed Spectre by the head office, has successfully led a charge to apprehend and pacify the Iron Maiden's terrorist cell earlier this week. Citizens of New York can sleep safer knowing that this menace has been brought to justice and is expected to fill out her life sentence behind bars at the Hydra supermax prison."

Withholding the urge to spit, Sam clamped down on his crutches and stomped to the kitchen to grab that cup of coffee.

The reporter continued her deep-dive, "And now, politics. Hell's Kitchen boasts another prosperous year under the leadership of Mayor Fisk. Following recent events concerning the escape of the Punisher, former military specials unit Captain Billy Russo, local citizens have demonstrated their support for the mayor's proposed anti-vigilante task force by taking to the streets in protest against the rising number of subservients. Opposing mayoral candidate, Congressman Murdock, warns voters to not be so hasty with their vote as he fears the new proposed task force may cause an increase in police unemployment rates."

Sam switched the TV off, his frustration causing him to toss the remote callously onto the couch, where it bounced and smashed onto the floor, batteries popping out of the casing and rolling under the couch.

Not without difficulty, Sam got on his one knee, his stump waving in the air without a place to perch, and extended his arm under the sofa, patting down to try and feel for the cylindrical batteries. An odd film textured object slid across his calloused pads as he patted down on the floorboards.

With an interested drone, Sam fished out the glossy paper and fell back on his ass so he could observe it properly. It was a photograph of him with someone who looked like an aged Carol Danvers. She was wearing a green flight suit, hiding her crow’s-feet behind blue-tinted aviators. Standing beside her was a grey-haired Peggy Carter in a wheelchair held in place by Sharon – sunlight flares blurring her smile. The air force logo was stuck to the side of a jet in the background, his old nickname 'Snap Wilson' spray-painted on it.

Sam Flipped the photograph around to skim read the fine, cursive inscription: ‘Congrats on moving up, Snap. You'll be missed by the grunts at the bottom. Leave some target practice for us. And remember: one day at a time. C & S.’

"Well, I'll be damned. Hello, S..." Sam's nail scratched at a smudge on the corner of the photograph, it looked almost like a watermark stamp of the letter L. "What is--"

A shrill ringing sound came from his landline. He swivelled his head from side to side trying to spot the annoying thing. It was hiding under a stack of old newspapers that needed to be put in the recycling.

"He- Shit!" He almost tumbled on one leg. "Hello?"

"Sam? It's Bucky..."

***

Bucky shoved whatever useful supplies he could find lying about into a small backpack before slinging it over his shoulders and clipping it at the front of his chest -an old habit as it were.

Natasha walked in on him circling blind spots on a map with a marker, his face conveying devastation as if she'd just caught him in bed with another woman.

When Bucky didn't say anything, Natasha pointed to the training equipment peeking out from under her bed –their bed. "Training sessions. I forgot my knee pads." She picked them up, dusting them down. "You're leaving, aren't you?" Her tone was sad yet insightful.

Bucky was growing increasingly agitated as the seconds continued to count down on his watch, "I need to head over there!"

"James, stop! Last time you were on Hydra's radar that damned psychopath tore your arm off!"

He folded the map into his back pocket, "Stark?"

She threw her hands in the air, "No, Stark is the only reason you were fitted with a replacement! I'm talking about that monster that Hydra fished out of the ocean."

"Steve?" His tone went dark.

"Did you hit your head when you were chopping firewood yesterday? Yes, Steve. Of course, Steve!" Natasha smacked the side of his head with the knee pads.

Bucky strode past her, "You don't have to shout."

"Then stop acting like you were born yesterday!"

One of the foster kids witnessed their shouting and was ushered into another room by a worried-looking Pietro. Natasha swore in Russian before slamming their bedroom door shut, trapping Bucky inside with her.

He took her hands in his, "Look, I know I don't seem myself, but I have to get to New York. It's important. There's someone I swore to protect, no matter what and she's in danger now. I know you still care about the world, Na- Talia. These kids you're helping are evidence enough. Help me do this one thing and I promise everything will go back to normal."

Natasha sighed, "I haven't seen that look in your eye in a long time. Whoever it is must be important."

"More than you know."

"Where is she... your friend?"

"With Hydra. In New York."

"A prisoner?"

"Of sorts."

"New York huh?" Her eyes steeled with venomous conviction, her fingers twitching around the air between her fingertips and her scar. "I can think of a reason or two to tag along."

"No, I can't ask you to come with me, it's too dangerous, and the kids need you."

"You need me, liybimaya. It's like I told you all those years ago, the only thing powerful enough to separate us is death…" Her hand fell on his jaw, eyes searching his for something he couldn't give. "And even then, it wouldn't be enough."

Bucky sighed, finding himself instinctively leaning into her touch, "Okay, you win. But we have to stop somewhere first."

"Dge, Soldat?" her Russian trickled out.

"Missouri."

 ***

Knock. Knock. Knock

"I'm goin' as fast as I can, god damn!" Sam chewed his bottom lip as he clomped his way to the door.

Just as he was about to twist the doorknob, the door burst open and a supersonic boom shook the keys on the wall. A blue and silver streak whizzed past Sam's peripheral. Turning, he was pleasantly surprised to find Pietro eating a packet of crisps that he stole from the kitchen cupboard, feet kicked up as he surfed the channels. “Damn, that’s one fast kid. Like a friggin’ silver bullet.”

"Forgive him," Natasha urged. "Our TV hasn't been functional beyond the weather channel for days, he's forgotten his manners." She extended her hand, "Name's Natalia Romanova."

“Nat…” Sam's mouth remained open for a moment too long and her eyebrows rose up. Gathering his jaw off the ground, he clasped her hand with a loud smacking sound before nearly barking out his reply through a wide grin, "Sam Wilson. Pleasure to meet you."

"Samuel Wilson! I knew that name was familiar. You’re the pilot who crashed the prototype--" Natasha stopped herself mid-sentence.

Sam shrugged, "The very same apparently." He moved to the side to let her in.

Once in the kitchen, he noticed Bucky hadn't stopped staring at his leg, or rather the absence of it. "Take a picture, it'll last longer." He glowered. "If you thought your day was weird, mine was definitely worse."

"I can see that," Bucky cocked his head to the side.

“Coffee? I’m pretty sure it’ll give you tetanus from the rust but…”

“No, thanks.”

 Bucky laid out the map from earlier on the kitchen table, his mind obsessing over his attack plan. Sam kept leaning over every now and again to catch a glimpse of Natasha and Pietro looking very much alive and real in the next room.

Curiosity got the better of him, "What's up with you and Nat?" 

"It's Talia over here," Bucky's eyes remained glued to the blueprints. "And apparently we're together and I go by James."

"No shit?" Sam's tone took on a higher pitch, hands tucked under his pits. "I'm an alcoholic who lost a leg and you get paired up with Nat. Yeah, that's very fair," he grumbled sarcastically.

"Sam..."

"I know, I know, I'm focusing on the wrong thing. It's just I'm a little mad is all."

Bucky stopped hunkering over the table as he looked at Natasha and Pietro with an almost-longing stare, "It's weird, you know. The other Bucky has this full life here. He smiles in all his photographs, he wasn't brainwashed by Hydra. Hell, he's even raising kids with Talia and is like an older brother to Pietro. Despite how fucked up things are over here, his life seems fuller. He seems… better."

Bucky shook the thoughts from his head, dropping the permanent marker on the table, watching it roll without making an effort to stop it.

"Speak for yourself," Sam told him off. "This side's Sam is a mess. I practically woke up in my own vomit this morning."

"Jesus," was all Bucky gave him.

"Hang on, did you say you and Nat are raising kids together?"

"Mmm-hmm. We run a kids shelter in Canada. I train them in self-defence on Wednesdays and Fridays, and History and English every other weekday."

Sam laughed, using his crutch to poke Bucky's side, "Well, shit. Look at you. Mr Professor Barnes."

Pietro's pure laughter rippled out from the other room as he watched cartoons going about their usual tomfoolery. Something kept gnawing at Bucky's stomach, making him feel uneasy.

Sam scratched his cheek, "You alright there, Tin-can?"

"During the car ride over here, Talia kept reminiscing about our third year anniversary and how we spend a week on a luxury cruise aboard a blip –for some reason, they're the more acceptable form of travel here."

"I mean, it's not such a bad idea. Reduced carbon emissions-"

"That's what you're focusing on? Blips are filled with hydrogen. They explode!"

"Excuse me for finding a bright side in all this. In case you hadn't noticed, there's not much of that going around." Sam tapped on his leg, his eyes narrowing at Bucky.

“Christ on a cracker, must I spell it out?”

“Spell what out?”

“Three-year-anniversary,” Bucky waited for Sam to catch on.

“Oh Shit! Did you two…” He walked closer to Bucky to whisper-hum the wedding march.

Bucky groaned, “I don’t know. Maybe. It’s not exactly the easiest thing to bring up in polite conversation, besides she already suspects something is off with me… him… us? Whatever, you know what I mean.”

Sam chuckled, “Huh… that’s kinda ironic. You spent so long being afraid to propose to the girl you love, even though you have everything –security, shelter –and yet somehow, the guy with more to lose, is the one who was least afraid of being with the woman he loved.” He said, glancing over at Natasha.

As if on cue, the dark haired woman rose from the couch, a piqued expression taking over her features. “Okay, James. Enough with the whispering and the side-ways glances. I think I’ve given you two enough time to catch up. Now… what’s the plan?”

“Well…” Bucky tapped his metal finger on the red circled dot and delved into the details of his rescue plans.

“That won’t work,” Natasha said bluntly once he was done. “The only way you get into Hydra alive is if they bring you in.”

“Are you suggesting…?” Sam’s eyes widened.

“Yup.”

Pietro whooshed in from the couch, licking the crumbs from his fingers. “If we’re going after Hydra, we’ll need backup.”

“I agree,” Natasha replied as she pulled out her phone to dial a number.

“I don’t think the bol'shaya zhenshchina will be enough. I have a favour I can call in. Don’t wait for me.” Pietro added before zooming out of the house.

 ~Hydra HQ, NY

You marched into the interrogation room, the sound of muffled steel punches landing on a human jaw made you flinch. The doors opened automatically and a large molar flew across the room, knocked loose from the mystery man’s mouth. He laughed, staring down his interrogator with such conviction it made your skin erupt in goosebumps.

“Leave us,” you told the man wearing the knuckle duster.

He nodded curtly before spitting, “Terrorist scum!”

You dragged over a chair and sat on it, arms resting on the back support. “So, they tell me you got caught trying to cross the border patrols. Not very smart.”

“Oh, I don’t know, as plans go…” the man lifted his head so his striking blue eyes pierced through you, a satisfied smirk ghosting over his lips when he noticed you physically shudder. “It wasn’t so bad. After all, it brought me to you, didn’t it?”

Instantly, a migraine hammered against your cranium with the highest intensity yet, something about his presence, his voice, his eyes, undid every fibre of your being until all you felt was nausea bubbling up to the surface. You gripped the chair to steady yourself but the longer he stared at you, the worse everything got. You felt like you were being torn apart at the seams. In desperation, you hurried out of the room and raced towards a potted plant so you could relieve your stomach of its contents –though there wasn’t much left to throw up.

“Babe, are you alright?” Steve’s hand rubbed at your back as he kneeled next to you.

You huffed lifelessly, wiping the residue of puke from your mouth with your sleeve. Your chin quivered violently forcing your teeth to chatter. The sickly miasma of ozone clung to your nostrils as ghosts from another life encroached around you, and visible only to you from the fact that Steve wasn’t distressed in the least to see a very alive and well Wanda Maximoff laughing by a window -sunlight like fire on her red hair. Through the windows reflective surface, you saw him again, the ghost from the apartment and suddenly, you understood why the man in the interrogation room had shaken you to your core. It was him… the ghost, only he wasn’t a figment of your imagination. He was real too.

You grabbed onto Steve’s arms like they were the only thing keeping you from downing. “I think I’m losing my mind…”

Chapter Four: The Choice

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[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 18 Prompt: Words to Parents)

I am interpreting this prompt in two different ways so will address it as such starting with explaining how my parents are with my condition and then words to parents of kids newly diagnosed or who present with a wide array of symptoms.

My parents were awesome prior to my diagnosis. There were things I wish they had known and even now wish they knew but I almost always had that support system some don't have. Sure there were a lot of times I would tell my mom I was having chest pain or my heart was pounding where she would say “It's probably just anxiety” and of course when anyone has a headache, runny nose, stuffy nose, scratchy throat or generally coming down with some kind of bug her notorious saying was “It’s probably just your sinuses” which me and my dad still talk about to this day. She went decades of her life taking Sudafed every morning truly believing she just had bad sinuses to find out years later she was actually having an allergic reaction the entire time due to Systemic Mastocitosis and really needed allergy meds and since she had bad sinus issues she seemed to think anything and almost everything that someone was experiencing from the lungs lungs up, weather it be a migraine, eye pain, sore throat, coughing, going horse, runny nose, bloody nose etc. it was just your sinuses which usually wasn't the case because soon after I would test positive for strep throat, oh the times I had strep throat. I had it so often that when I got it, I started not even noticing the throat pain believing my mom that it was my sinuses but more major like a sinus infection, to go to the doctor and find I had strep again and was desensitized to the pain. Sometimes my whole throat and mouth would be covered in blisters before the pain was bad enough just because I always had strep. Occasionally it was other things like my migraines growing up I now know were from Occipital neuralgia, craniocervical and atlantoaxial instability. So she didn't always take me seriously but I have to admit, after two decades of your life being told you're a hypochondriac and your symptoms are all in your head, I started to believe I was crazy myself and that my symptoms either weren't real or much less severe than they really were.

My dad being autistic never really dealt with my health stuff very much. He just isn't knowledgeable in it and has no clue what to do so my mom was the one who did that. Though she pawned off a lot of my more serious issues on it all being on my head she was always there for me. She took me to the hospital if it was needed and knew I didn't say I needed to go to the hospital unless I really felt like death. There have been several times where doctors have tried to say nothing is wrong and send me home where she has literally refused to take me home or argued with doctors but this was mostly after my diagnosis. I kind of wish she would have done this and pushed harder when I was a kid as she very much has, I guess you would call it brand loyalty but it went further than only grocery shopping at Meijer, literally fighting with me for years about leaving Verizon because in her mind Verizon was the only company that was any good, only allowing one person to cut her hair even if it meant following her to a new job, she had a doctor she liked and stayed with him for most of my life and denied he wasn't a good doctor after an incident in high school which caused me to switch. It's hard for her to move on even if there is no progress or things start to get worse so one thing I wish is she would have done a little more doctor shopping when I was a kid.

Doctor shopping is oftentimes frowned upon at and when most people hear of doctor shopping they tend to think of it as someone who goes from doctor to doctor looking for drugs or or to sign disability papers so they can get a free ride at life but when you have a rare disease doctor shopping means something totally different and can even be so vitally important your life and future depends on it. I had so many doctors who simply invalidated my symptoms saying I was making them up for attention or had a mental illness. Many of these doctors did nothing at all but the majority of them did the exact same tests over and over. If it was a doctor outside of the hospital they did a CBC, Chem. and a 7 (Basic Metabolic Panel) which always came back normal or borderline normal therefore they deemed me healthy, slapped a psychiatric disorder on me or simply said there's nothing wrong and sent me on my way,

If I went to the hospital, they would do the CBC, Chem. 7, accuse me of doing drugs or being pregnant or when I was really little bring in case managers making accusations of child abuse that wasn't happening, then do a drug test, pregnancy test and STD testing, say the CBC and Chem. 7 were normal or near normal, congratulate me on not being pregnant, having any illegal substances in my system or STD’s, slap a psychiatric disorder on me saying they tested everything and sent me home. When I got older, lucky me, I got two drug tests, the urinalysis drug test and when it came back normal, they would come in and draw my blood assuming if I was having seizures, passing out or having heart palpitations I must be on drugs and tampered with the urine test. I wish prior to my diagnosis my dad would have had a computer and learned to use it and both my parents would have done more research. I also wish they had advocated for me better and if one doctor said they didn't know or didn't believe me, they would have moved on to another doctor because if I could have gotten diagnosed sponsor it would have saved me some permanent damage to my body that I have now and possibly spared me some of the medical abuse and neglect though even with a diagnosis you can't avoid it, especially when it comes to the hospital.

Doctors and nurses are just as lazy as everyone else. It's just like every other job where 5% of the employees do 90% of the work and 90% of the employees do 5% of the work. The ones who actually take their jobs seriously are used to the max by their coworkers and like me when I was a nurse, didn’t believe the patients deserved to suffer or pay for their staffs laziness and neglect and those are the ones who try to play superman taking on their patients and everyone else's, answering call lights that aren't theirs, bringing food to others patients, making sure they are turned or their catheters have been emptied and generally running around like a chicken with their head cut off and I can always tell who falls into the 90% who uses the 5%, carrying less about the patient as long as they get a paycheck and the 5% who look like they are about to fall over yet still giving what they don't have to make sure the patient doesn't pay for their lazy staff member.

It's very easy to tell when you have spent a large portion of your life in doctors offices and hospitals and learn how rare it is to get one of the people in the 5% as your medical personnel and watching the lazy staff you have out your door at the nurses station sitting with other lazy staff in front a computer laughing at a YouTube video their watching, gossiping and talking badly about another patient loud enough for you to hear, playing pranks on each other, one nurse who drops her pants moons another in a room of 9-11 year old little boys, The nurse who has the pediatric patient who flat lines, on bad days, it's not uncommon for this to happen 20 times in one day and at their best, at the very least multiple times a week. The patient's vitals are linked to a pager the nurse carries so if the patient's heart stops the pager will alert them yet they consistently leave the pager in the patient's bed, on their night stand, at one of the computer kiosks where nurses chart, in another patients room, in the activity room or god knows where. I've found it in the bathroom on the toilet paper mount, in the linen closet on top of some towels, you name it then this same nurse who is buddy buddy with the nurse slips away with a coworker to the activity room or to the nurses lounge for you to later walk in on them playing cards and talking bad about patients or other staff. The two nurses going through a wedding magazine, looking at dresses and hear one say “That's my room”, and the other one say “Just ignore it and let Janett get it” Yes these are true stories down to the name used for the poor nurse who was running around like a chicken with her head cut off. All experiences I have seen either in the roll of the nurse and in the roll of the patient.

I was mostly around nurses and of course you don't see doctors very often but being in a chair I have been forced to use a bedpan before and seen examples similar to this with doctors as well. Once I was taken downstairs for a cardiac ultrasound, asking to go to the bathroom before they took me down because I had my call light on to go before transport even came in my room. They told me I would only be down there 10 or 15 minutes and asked me if I could wait. They took me down there to beds of people lining the halls and I had 18 people in front of me. Well, 15 minutes turned into 4 hours. I asked multiple times to go to the bathroom and they said they don't have a wheelchair down there and if I can't walk to the bathroom I have to hold it. I even asked if they could call up to my room and have my mom bring my chair down and as gross as it sounds, I even got desperate, breaking into a sweat I had to pee so bad and asked them to wheel my bed outside the bathroom and lower it as low as it goes, and I would put my blanket and pillows on the floor and slide out of my bed onto the floor myself and they can pull me on the blanket to the toilet or I could army crawl and use my arms to pull myself up onto the toilet. They still said no. I asked earlier on if they could take me back to my room or bring a wheelchair, still no.

Eventually I told one of the nurses that I had to pee for 3.5 hours, she saw that I was all sweaty and shaking. I said if they don’t get me somewhere to pee within the next few minutes they were going to have a huge mess to clean up. She grabbed two bedpans, a small one and a bit one, said you're tiny and I told her no, use the big one, I have EDS so my bladder can stretch really far and I can easily pee 22 oz. so she rolled me into a doctor's personal office, he was in there watching a movie on Netflix on his computer, yes a full blown Netflix movie. He tried to flip the screen back to an ultrasound image really quick when the nurse stormed in with me to make it look like that's what he was doing but he fumbled around a little bit and wasn't fast enough. The nurse told him to get out so he left and I had to pee in a bed pan in his office… then spent the next few weeks having to wear diapers for bladder leaks because they let me hold my bladder so long my bladder stretched out too much from hypermobility and it folded on top of itself resulting in bladder leaks until it shrink back down. Thank you OSU. Doctors can also be extremely lazy and I wish this was something my parents acknowledged more or took more notice of and fought more for me, looked more into my rights, such as being able to call a patient advocate or fire doctors and nurses which is something I had to find out myself.

I found out I had EDS before I was even diagnosed which is what made me fight so hard to find a doctor who has heard of it. I got desperate being sick and spent years learning how to find and read medical journals. When Facebook started having groups I started joining groups to ask questions, I started going to doctors and no longer letting them call the shots. If they said they wanted to do a Chem. 7 and CBC I would say that's fine if they want to but it will come back normal and start requesting tests that aren't considered standard and that are used to test for specific conditions rather than just evaluating me for acute conditions. I started walking in and telling doctors how I felt and when they either said well we will see you in a year to see if things change or wanting to run just the basic CBC and Chem. 7 I would start saying “Could you run a 24 hour Tryptase Urinalysis”, “Could you run a gastric emptying study”, “could you run a 24 hour urine for Cortisol levels”, “could you run an ELISA”, “would you write for a flexion/extension MRI with contrast”, “What about a rotational CT” “Everyone wants to do a colonoscopy but instead of ordering that can you order an Endoscopy this time?” “I would like to get an “ATCH Stem test”, “I know you have never heard of one but if I email you the information will you order a Tilt Table Test”, “You’re doing that Aortic Ultrasound without contrast? It’s supposed to be done with contrast. Could you call up to the doctor and ask him to add contrast before you start?”

Sure a lot of doctors would downright refuse. I have gone in 5 and 6 times asking for a test and being told no, only to go in the 7th time and be told “It will come back negative but if I order this will you quit bugging me about it?” for them to order it and the test to come back positive for the condition I wanted it ordered for then they treat me like total crap to the point the office staff is mentioning about how bad he is treating me to find out he’s doing it on purpose to try to get rid of me as a patient, probably because he realized what he said was really wrong and he made himself look bad. I have learned that if a doctor isn't willing to listen to move on and find someone who will. You need to find one who is willing to run the test or even just ask if I can email them some medical journals or information about the test or showing the importance of it or why I believe it needs done, willing to learn and if I can prove my case they will order it no problem.

I wish I had someone who started this for me as a child who did the research or helped me do the research to know what tests to ask for and to find a new doctor for me if one was either trying to slap a psychiatric label on me or acted interested but simply refused to run any tests so my care went stagnant. I still wish my parents knew the ins and outs of EDS like I do and really researched it because it makes me a little nervous when a squad is called and they are stumbling over my diagnosis or saying “She has oh, that one heart thing that makes it go really fast. Oh what's it called or only naming like two of my conditions. It also scares me that one day I will be rushed in internally bleeding since things like Aortic Dissection, Carotid Dissection, Mesenteric Dissection, Iliac Dissection or Femoral Dissection as well as uterine and bowel rupture are common and can happen very suddenly in EDS that my parents may not know the common areas for bleeds or know them from most to least common so they may not know where to look or may not realize its actually internal bleeding at all until it's too late.

With all of the craniocervical manifestations I also fear I will be sent in for respiratory distress a or something else emergent relating to my craniocervical instability and my family family won’t realize its from the instability and if they do they wont know where to find information to prove this to a doctor or who the five surgeons in the US are who can operate on it so I will either end up on life support until someone gives up on finding the root of the problem which I knew all along what it was but couldn't tell anyone and pulls the plug, unable to tell anyone what is happening and advocate for myself, die before they even get a chance to hook me up to life support or end up under the knife of a surgeon who has absolutely no clue how to do the surgery I need and what modifications and special precautions need to be made for someone with EDS and I will die on the table like a few others I know or the last scenario, where I will have the surgery, wake up from it and it will be so botched that I’m one of the ones walking around with broken hardware, screws drilled into my spinal cord and paralyzed from the neck down, in more pain than I am now and the damage is too extensive to be repaired.

It's so important for the patient and their family to have very extensive knowledge of the condition since it's very complex and there are a lot of things that can go wrong at any given time. It's important to know what symptoms you are experiencing at any given time are associated with or at least the ability to know what medical emergencies are more common in EDS patients and the ability to narrow it down to 2 or 3 possibilities because most medical professionals don't learn about EDS or learn very little.

Just to put the complexity of the condition into perspective let's say you wanted to buy a book that taught you about diabetes and it was 500 pages long but you wanted to also buy a book on Ehlers Danlos Syndrome and be just as knowledgeable by the time you finish about EDS as you are when you finish the book on diabetes, there are about 15 common comorbidities of diabetes and about 250 common comorbidities of EDS. Diabetes can affect a handful of other organ systems however EDS effects every single part of the body so if you wanted to be just as knowledgeable about EDS as you would about Diabetes after reading a 500 page book about it and its comorbidities, given they were only allowed to give you more basic knowledge of comorbidities, say 10-15 pages per comorbidity, depending on its complexity and the rest on Diabetes you would have to read about 4,573 pages and that's only for hypermobile form of EDS which is broken down into trifecta so I gave 15 pages to each comorbidity of diabetes, were going to assume this book is on type 1 diabetes given there are 2 types of diabetes and 13+ types of EDS so after giving 15 pages to the comorbidities the remaining was for the condition itself. Since hypermobile is usually seen in the trifecta I had to multiple the remaining pages by three then add 15 pages for each comorbidity to get the total number of pages and even this is a very rough estimate since we need to consider how many organ systems are involved in each and how complex the comorbidity.

In most medical textbooks EDS is not listed at all or is only condensed into a few paragraphs at the very most while learning about collagen and connective tissue so if anyone in the medical field learns about it at all its very very little, so little that they can easily forget those one or two paragraphs they read our of the thousands of pages they read during medical school.

Now I know it sounds like I’m talking bad about my parents but that's not the case at all. My parents are incredible and so much better with my condition than a lot of others. They may not know the ins and outs of this but they know I am not faking anything, I’m not exaggerating, they know, especially with my PTSD, that if I go to the hospital I am pretty darn sick and know when to make me go if I continue refusing to go to the hospital. They don't want to talk about it or admit it so will often downplay the fact that death can happen very easily and at any time and I am not going to live an average life expectancy. They may avoid talking about it or downplay it but I know they know just how serious this is but they already lost their son and don't want to lose their daughter so avoid the topic.

They refused to let me be sent to a nursing home or long term care facility when we were told I could no longer live alone and brought me into their house. They help me with a lot of my needs. Heck, my mom has given me baths as an adult because I have been too sick to do so. My mom helped with training Maggie to be a service animal, making sure I made it to all of her classes, helping me teach tasks I struggled with due to being in a chair, using her commands so she gets practice and doesn’t forget what she has learned. My dad not so much. He's a softie that has let every animal we have ever owned, own him. If it were up to him to do the training, Maggie probably wouldn't even be house broken yet if I’m totally honest lol. They have taken on so much with me and though I appreciate it more than they could ever know I also feel terrible guilt surrounding all that they do.

They have to drive me everywhere. The safety of public transportation in America for people on Medicare is downright deplorable. Only one agency contracted by Medicare has seat belts for wheelchair users, most of the vans are from the 90s and not up to code. They are actually so old that someone who is disabled isn't even allowed to buy one for personal at the age the ones the state provides transportation in here in Ohio because they don't meet the safety requirements even for the minimum amount of insurance yet a cab company is allowed to purchase and insure them to transport the disabled in. Its one of those things where it's illegal for the members of the state but the rule doesn't apply to the government kind of things. Their extremely dangerous, I have been in ones in my 425 lb. wheelchair, with my112 lb. self my 17 lb. service dog in her one or two pounds of gear and a backpack on the back of my chair with my meds and maybe some food and a drink in it to take to a doctors appointment so maybe another 10 or so lbs. of weight, riding in a van and staring through the rust holes in the floor looking at t the rusty parts under the van and the pavement of the highway underneath me, hoping to god the floor doesn't give way to all of this weight so I don't fall through.

I've been in two accidents with drivers, most of these drivers smell of mamajuana when they come and one of them had a rink that had a little tiny canister on it (If I remember I’ll post a picture I secretly took of it” at a stop light he opened the little can, poured white powder into his hand, used his other finger to brush it into a pile in his palm and then snorted it up his nose. I have ridden in vans someone threw up all over, one that the door to the wheelchair lift had 3 of its 4 hinges rusted all the way through so when the driver opened the door he had to hold it with one hand because it was hanging on there sideways like a broken cabinet door with only the bottom hinge still attached, got me up the lift then shut the door, came inside and used a bungie, hooking it in a hole that it looked like was drilled into the door and then a natural hole where the raised roof of the van and the bottom of the van attaches in a hole that didn't have a bolt. It was a really windy day and on the way back, we were driving down my road, a gust of wind blew, the bungee snapped, almost hitting me in the face, the door flew open and the last hinge snapped with the door flying off and into the gutter along the side of the road. We were right down the road from my house and the driver casually said “I'll go ahead and drop you off first and grab that on my way back.” like that kind of thing happens every day or something.

I have had a driver ask to stop at a gas station and I told him that was fine thinking he needed gas. He pulled up beside the end pump and instead of getting gas we sat there for about 3 minutes when another guy in a red truck pulled up along the side of the building. The driver got out of the van and went around the side of the building where the truck was. All I could see was the back of the truck sticking, about a minute later my driver came out from behind the truck, sticking something in his front pocket, the truck left and then we left. I was hoping to god it was just his brother or roommate or someone giving him some money for lunch or something but for real, a wallet goes in the back pocket and what he had was smaller than a wallet since you couldn't see what was in his hand and most people carry plastic these days so I’m pretty sure I was just hoping it was lunch money out of wishful thinking because with along the side of the building out of view of most of the public and all it seemed pretty sketchy to me.

Anyhow my parents do a lot, they drive me to appointments when they can to try to keep me out of the appalling care of the state, they let me live with them, they provide a lot of care, cooking, doing my laundry, vacuuming and doing a lot of the things that I feel like I should be doing for them at their age. It really does make me feel extremely guilty and like a terrible person. They help with Maggie taking her out just to help me out even though I can usually take her out myself unless it's icy or snowy since she basically takes herself out lol. I can go in the yard with her in the late spring to early fall when it's warm and dry out so my power chair won't sink into the mud. They will pick up food at the store or meds for me they do a lot and with my mom having EDS too, I have seen my mom go down hill a lot since her botched surgery that left her on life support so I hate asking either of them to do anything or for help. My dad is almost 66 and my mom, though 8 years younger gets around worse than my dad does so it's really hard to need so much care and feel like I put it on them, especially when my home health aid was taken away when the pandemic started but of course most of the home health aids I had were so English incompetent's and fresh out of countries where they didn't have stoves or washers and dryers and what not, living in huts that they don't know how to use modern appliances or understand me when I relay my needs which actually made things oftentimes harder with a home health and than without one as my parents were always coming home to fixing messes the aids made too.

With all that being said, here is my advice to parents of kids with suspected EDS. Get them diagnosed as early on as possible. Do lots of research, I know it's a pain and may be a lot of work but the more you know about the condition the better. Don't stop there, learn your rights and laws around medical care and disability rights as well as techniques for advocating for your child. Get them on a 504 plan at their school so they can get the accommodations they need. Learning disabilities aren’t uncommon and the prevalence of high functioning autism is incredibly high in EDS patients so if you suspect they may have a learning disability fight for a diagnosis and have that added to the 504 plan. A 504 plan isn't just for learning disabilities, it can be for physical disabilities as well.

You don't want to caudle you child of course and many don't have a lot of severe symptoms as kids but make sure the plan accommodates for things such as food allergies, if they have POTS or low blood sugar make sure they have it in their plan to be able to bring their own food, be able to eat in class. I know on mine, I was allowed to use the teachers lounge microwave during lunch to heat food brought from home and they allowed me to use the bathroom in the nurse's office if I needed it. You can ask for things like that they not be punished for arriving to class after the bell within reason, especially if the school is large and they may have several classes on the opposite side of the building as their locker so they aren't forced to carry books for multiple classes or for them to have two sets of books, one that they keep at home and one that is in each classroom they attend class in so they aren't having to carry heavy books around or teased for having a backpack on wheels. This is one thing I would have really liked to have written into my IEP as a kid if I had been lucky enough to get diagnosed sooner. If they are more symptomatic, more prone to injury or have VEDS they may have more needs.

Again you don't want to be a helicopter parent and want them to do as much stuff for themselves as it is safe for them to do and want them to have all the experiences other children do but if gym is an issue you can request they don't participate in high contact sports or even have it put into their IEP that they can swap gym out for another elective like music, art or home economics class or in the lower grades where they may not have options for alternative electives you can ask if they have any teachers or aids available during that time frame who can create somewhat of a study hall for the younger child, helping them with their homework, studying for tests, able to sit there and let the child read a book to them and help them with any words they struggle with or even just play some educational games with them or let them play an educational game on the computer.

Some schools also offer physical therapy for kids, especially the ones with developmental delays who may not be mainstreamed and the therapy replaces gym for them. Even if your child has cognitive abilities cohesive with their age, you could see if they are allowed to join therapy with those children. With being able to do so much online now, I have heard of some requesting that on their bad days the teachers live stream them into their classroom so they can participate in class from home when needed or if the child needs a surgery or has a doctors appointment they can live stream in instead of going to school or live stream in part of the day before or after an appointment, going to school the other half of the time. You may also request extended time on homework like instead of turning it all in the next day, ask that they have the week, for example, they have to have all homework turned in from that week by the following Monday so say they are having a really bad day Wednesday and in a lot of pain or very fatigued and can only get their math homework done but not their English, science and history. They will be able to work on that homework throughout the week possibly adding the English to their Thursday homework, the science to their Friday homework and catch up on the history over the weekend so they at least aren’t failing or losing credit on homework if there are a few days a month where they are really struggling or not feeling well.

Another reason I suggest learning everything you can and really fighting for a diagnosis early is because if you work you are more likely to have a PPO insurance plan which covers a lot more than Medicare. You can get some things that Medicare won't cover out of the way in case the child has a possibility of being disabled as an adult. Genetic testing is one thing you really want to try to get done as a child as hospitals in some states like my own will not do genetic testing for EDS on adults unless they have another family member who has tested positive for one of the rarer forms of EDS.

You don't want to be in the situation I am where you have four doctors sure you have Vascular form and have been fighting to get you tested, your brother died before he had any testing, your uncle had an aortic aneurysm and died never getting diagnosed, you were referred to a geneticist who won't test you because you are under 21 and no one in you family has tested positive on genetic testing for VEDS, your mom is referred to genetic testing after coming out of a coma and being on life support after a major organ rupture that almost took her life and turned away for the same reason and your grandfather is referred and turned away leaving multiple members of the family suspected of having EDS but no one able to be tested because we are all over the age of 21 and I can’t have children nor would I want to because of the fear of passing this down to them there will not be anyone under the age of 21 to get tested in order for us to get tested so your stuck without a diagnosis. This is why you need at least a hypermobile diagnosis so you have time to fight for the genetic testing to ensure it isn’t a more serious type, especially if a doctor suspects it.

If your child has severe enough symptoms you can also get them listed as disabled under the state in order to get extra financial aid to cover medical needs not covered or special equipment like gait trainers or possibly a power chair for school and a manual chair at home It can cover the cost of tutoring and several other things insurance may not cover. If they grow up and work for so many years and end up getting worse, needing to go onto SSDI their SSDI it will also make it so that their payout will be higher if its on record that they were disabled before the age of 18.

Having a child with a complex health condition, especially when the condition is rare can be a lot of work and very stressful at times. Definitely learn everything you can and fight for a diagnosis for your child. If you suspect you may have the condition fight for a diagnosis for yourself as well. The sooner anyone starts treatment and can get regular screenings such as those for aortic dissection the more they can prevent damage early on and also prevent life threatening complications so that’s my advice to any parent out there.