#CHD

[osokasstuff]

people with congenital heart defects are expected to be either miserable or inspiration porn.

CHD(s) = congenital heart defect(s)

it's not unique experience for CHDs. lots of, if not all, disabilities are treated like that. are shown, seen, and expected to be either tragedy (tm) or inspiration porn. but it hugely affects people with CHDs and frames our experience a lot.

we're either presumed physically and mentally incapable, fragile, incompetent, expected to struggle constantly, expected to die early, expected to be miserable and pity (in a derogatory way).

or expected to be perfectly healthy after surgery/treatment/confirmation that we wouldn't be given surgery in the near future, expected to be fixed (tm), expected to achieve everything and more because look at these sportsmen/celebrities/other famous people, they made it through and you have to. expected to have no more symptoms, no complications, no after-effects, no problems.

when the reality is that our lives can vary widely. our support needs, problems, abilities, and experiences vary widely.

from the very beginning, there is no single condition called CHD, there are lots of conditions called CHDs (plural!), and their effects, presentation, symptoms, treatment options, and everything else do vary widely. and even the same CHD may present very differently, have different severity, there often are different treatment options (conservative and/or surgical depend on specific CHD) that will have different outcomes. making any assumptions based on *umbrella term*, on *subgroup of diagnoses*, is extremely misguided.

some people with CHDs do have huge limitations in physical activity. some people with CHDs do have neurological/cognitive/mental disabilities. due to comorbidities (CHDs are often comorbid with developmental disabilities and other disabilities), due to effects of surgery (anesthesia may cause brain damage, long recovery with lots of limitations may alter gaining skills and learning things and more), due to low oxygenation that may cause brain damage. some people with CHDs may have other disabilities unrelated (or seemingly unrelated) with their CHDs and have limitations/support needs/struggles because of them.

some people with CHDs can successfully recover with little-to-no after-effects and complications. some CHDs may even disappear on their own! (like patent foramen ovale or small septal defects may close without intervention).

some people with CHDs can and want to achieve lots of things. some people with CHDs can't and/or don't want to.

people with CHDs can have *any* support needs, *any* quality of life, *any* challenges & achievements & difficulties & everything. our experiences vary *widely*.

we shouldn't be presumed incapable and/or incompetent just by our *umbrella diagnosis*. and if we actually *can't* do something and *need* support, we deserve our needs to be met and deserve being treated with respect. we don't deserve to get unwanted pity, unwanted infantilization, all this shit.

we shouldn't be expected to achieve whatever people want us to achieve for being good inspiration (tm). our discomfort shouldn't be ignored. our needs shouldn't be brushed off. our struggles should be taken seriously. and we should be informed about possible struggles, possible symptoms, warning signs, etc!

we are neither tragedy story nor inspiration porn. we are diverse group of people with diverse experiences. and we should be treated as individuals, in every sense.

[alaydabug2]

I'm in the car and I'm bored en

SO HERES A LIST OF MY MEDICAL ISSUES IVE HAD THROUGHOUT LIFE 😃

Vaugly related to my fanfic

Tetrology of Fallot (tof): congenital (born with it) heart defect that is basically 4 defects in 1 (I do not have the energy to look up or type all those scientific words rn so sorry)

I've had 3 open heart surgeries to fix it o e at 8 days 10 months and 5 years

Died 6 times on the second one 😃

Ngl life isn't too different with it

If you don't count the yearly doctor visits and can't play contact sports

I mean there's more to it that that obviously but it's mainly small things like getting out of breath quicker and I bruise easy because of having to take baby asprin

BUT the doctors ORIGINALLY said I was never gonna be able to walk or talk or do anything for myself

God vetoed that decision 😌

NOW I NEVER SHUT UP 😁

Got a nifty battle scar down my chest as a souvenir ☺️

And I used to be called smurf baby cause I turned blue alot

I make jokes about it now (hush I'm allowed to )

Ngl pretty sure I'm short cause failure to thrive as a baby cause of that 😭

Don't think there's any scientific backing on that tho for tof patients

Imperferated anus + colostomy bag: basically means I was born without a butthole

Not even joking on that i wasnt

But had to have three gastrointestinal surgeries from that

Don't know the ages or many details but I'm pretty sure I was two for the last one

And I had to have a colostomy bag

Thankfully don't remember it

Buy my waste went into a bag that had to be changed out

Ik it got infected so the scar is bugger than it should be

Seizures: if you've read my fanfic that's explained in detail for how it feels

But that was from aged 5-10

We never found the specific reasons for it

But we do hypothesize it has something tk do with possible scar tissue on my brain

Either from a heart attack/stroke/lack of oxygen from my second heart surgery is what we think it could be from

During a seizure my heart would start beating weird (not good description ik but idk how to describe it really) and my vision would start to tunnel out my tongue would tingle and then I'd black out

During a seizure I couldn't hear anything or see anything but my head would completely start to tingle

From my parents I was told during them I would stiffen up and lock my joints and almost seem to hyperventilate

It was control moderately well by medicine but I thankfully do not have them anymore

Hard hearing: im not like deaf or anything nor do I use hearing aids but my hearing isn't what it should be for a normal teenager lol

This is because during one of my heart surgeries they gave me a drug used on horses and a little too much if it at that (ketamine?)

Legally blind: yeah come to find out last year found out my eye sight is actual crap

Without my glasses I am legally blind

I've got 20/200 vision 😭

So I've got these crazy thick glasses now

Tourretts: neurological disorder where I make these random noises and movents

Got diagnosed back in sixth grade

My tics ate ill make various sounding noises (all kinda of variations of a hiccup for visualization) and my head will jerk back

It was awful before we found out what it was

Got picked on for it quite a bit and a certain teacher of mine essentially told me "just stop bro lol" and I'd get sent out of class for it even after we had doctor notes for it

Just get up out of that wheel chair then then buddy ☺️

They'd get set off my certain things

Music being one of them so I would carry around these earbuds when there was music around so it didn't get set off

I'm on medicine now for it and it's a LOT better

And a recent development (in the past 6 months) I've been able to listen to music again!

The tourretts aren't going away tho

If over been without medicine for more than 2 days it's BAD

Ovarian cyst (possible pcos?) : this has happened over this summer so you already got some rants on that lol

Buy I've got an 8cm cyst on my left ovary

Hurts like a beach 😃

In fact this Friday I was holed up in my room hyped up on narcotics cause of it

Fun stuff 🙂

Surgery is supposed to be on October 5th so we'll see how that goes

Yeah so medical history of mine 😃

That's fine

We'll see what comes next to the collection I can add

Also here's some pics of a couple of my scars (that I can show several are in places I'm not keen of people seeing 😅)

That's my colostomy scar

And near the top you can see a scar from a chest tube from my third heart surgery

And here's a really good picture of my heart surgery scar that I have (goes down to under the ribcage)

On my neck you can see a breathing tube scar

At least I think that's what it is

Also the corner of my lip I have a scar from some sort of tube from surgery (can't see it well on camera

Tbh idk what half these tiny scars are from

I just know they're remnants of surgery

Any way I do know kw I have a couple of other chest tube scars

But they are not in places to be shown

Same with a few dimples near my tail bone from gastrointestinal surgery

But those are there too

[yaz-the-spaz]

[zyjecichokrwawiaclol]

bilans z wczoraj.

zmienilam ze teraz jem do 900 kcal.

cos dzieje się z apką więc mimo wpisywania dalej mam inny deificyt ale ok.

wypiłam 2 l wody i zrobiłam zimną kąpiel wiec git!!

[hurricanehiatus]

[lakeofbl00d]

I absolutely adore disability awareness art and any disabled related art... I just wish there was more art for heart disease/congenital heart disease too. Sometimes makes me feel even more alone when I can't find anything.

All I can do is find the spoons to make some eventually [and when my back isn't hurting], and continue to draw myself with my open heart surgery scar.

[marysuehospital]

Character Bios pt. 1

Marigold Bloom – Hanahaki trope. Pulmonary specialist.

Marigold was born with a Congenital Diaphragmatic Hernia (CDH) which weakened her respiratory system to the point where doctors were afraid that the hanahaki flowers would put enough undue strain on her lungs to kill her instantly. Marigold does anything she can to avoid catching hanahaki. She avoids all possible meet cute locations, tries not to form close friendships, and intends to never fall in love to stay alive.

Inspired by the many doctors and surgeons whose hard work let Marigold live an almost normal life, and out of a “know your enemy” mentality so she can more closely study both her conditions, she became a Pulmonary Specialist. Past her wit, sarcasm, and social independence is a phenomenal doctor willing to do whatever keeps her patients alive.  

Elias Frankenstein – Color blind soulmate trope. Pediatrician. Elias wants badly to find his soulmate, not only to gain full color spectrum sight but also to find his forever partner and other half. He is open to falling in love with anyone but knows the only truly lasting romantic relationship will be his soulmate one. Despite this quest he spends most of his time at work around young patients and their parents, aka. Non-potential candidates, and work friends. His friendly energy was even able to melt Marigold’s guarded exterior though she’ll cite the safety in knowing he’s already tied to a soulmate as reason for their friendship.

Dove Sinclair – Unknown trope. Mortician.Dove doesn’t give a shit about other living people's feelings or what they might get squeamish by. She’s an open book and won’t sugar coat anything to the point where most are terrified of her. Good thing the hospital morgue is in the basement so she’s only around if she wants to be.She began her career much later than most, and has real world experience the young adult hospital staff seem to lack. Her only secret is what her trope is, but there's lots of speculation.

[ziamln]

Long ramble post. [1D]

I’m feeling nostalgic, overanalysing shit, and bored on a Thursday night with nothing to do. You can read this or skip over it, especially if you disagree, I’m not looking for drama. This will probably be messy and incoherent with 0 structure. For those of you who weren’t there during the 1D era, this may be confusing, particularly if you weren’t there during the shit storm that was 2015/16. Again, feel free to skip this, as it will be long and probably won't make sense, but this is my blog so you don’t necessarily have to agree with me. Before I go into this I feel like I need to clarify, I am proud of all 5 boys and their solo careers, I support them all wholeheartedly, and my saying I miss OT5 doesn’t mean I don’t. some things are facts stated by the boys others are merely a speculation or my own deduction from what has been implied or reading between the lines, just to put that out there. Bear in mind I am a Ziam blog, Liam and Zayn have always been my focal point, and always will be and I also have a Louis [& slight Larry] bias so, do what you will with that information. Basically feel free to skip!

It was so good to see Zayn in an interview after so long [I can't lie it's so weird hearing people commenting on his talking voice as something new and unusual], but hopefully, he’ll actually get better promo for this upcoming album, I’m super excited either way, his music is rarely short of anything but a masterpiece. But there’s a line in Zayn’s recent podcast which stuck out to me.

Personally, I found this intriguing, because at least to me, I feel as though it explains quite a few things. Particularly regarding Zouiam [Zayn, Louis and Liam], I’m not saying it didn’t apply to Niall or Harry but, I feel like it provides some sort of perspective on things others have speculated on, and also some things I have speculated on. Again, this is merely a speculation on my part, you don’t have to agree [scrolling is very easy]. I will not claim to know as much as I may have known about all 5 of them as I did 8 years ago, admittedly, though I support most of the boys through listening to their music, I don’t pay much attention beyond that to anyone other than Zayn, Liam and sometimes Louis, this isn’t to say I don’t like Niall, I enjoy his music or Harry, I have always been a Ziam/ Zouiam account and have always stuck to them, and as solo artists, I prefer their music, even during their time as a band. [As I’m sure many have a preference for the other boys. I don’t see an issue with it unless it is purposefully disrespectful or hateful to others.]

I know a lot of people are stuck on the line of how after ‘5 years together they all got sick of one another’, which is understandable and perhaps almost inevitable. [Personally, as someone with a sibling I definitely understand the sentiment] I don’t see any malice or drama in it, it would naturally happen to anyone after so many years of constantly being together, with barely any breaks and performing together non-stop for almost 5 years. It would catch up to even the most patient of people, especially considering how they were literally teenagers/ young adults the whole time. Nothing he said in that interview was hateful at all.

Also not to dismiss his line about how he said "I completely selfishly wanted to be the first person to go and make my own record." with this, whilst I’m not saying it’s untrue because it could be true that that's what happened. But I can’t deny its a little confusing because of the number of times the story of his reasoning for leaving the band has been changed throughout the years, initially, it started as him citing stress and saying he wanted to be a ‘normal 22-year-old’, then it was that he said there was ‘never any room for me to experiment creatively’ made sense as it was rumoured that his writing had been snubbed on Four and it could possibly be a mixture of all the reasons combined. But my point is we have been given many different reasons, but we will probably never know the full truth, so at this point, it's anyone’s guess as to what the actual reasoning was.

Of course, there is no doubt that behind the scenes of the entire One Direction era was a complete shit show, as has been stated/ hinted at by most if not all members at this point in some way, shape or form. So we can only begin to imagine the stress and pressure they were constantly put through. There is a lot we don’t know about that time, and probably never will. Some things are perhaps even traumatic for the boys who had to go through it, all we can do is speculate and be as supportive as possible as fans. 

I mean I feel like this trauma has presented itself in different ways with each member, perhaps in ways we will never know, Zayn himself has stated that we could never understand that time as it is something only they would get. 

In terms of image and what they show; Niall is quiet, unproblematic and as far as I’m aware he seems pretty much like, other than his music and tours, he keeps to himself. Harry from my impression, is a loudly quiet person, by this I mean, he comes across as loud as though he divulges a lot, people may claim he is the one who people have the most knowledge of, which is true to an extent. But in terms of his personal life, there are limitations, understandable of course, but it seems to me we only know what we are shown and the rest is left to be read between the lines. 

Louis, I feel as though we learn more about him through his music, his private life is fairly private, other than what he talks about and what we are shown, [side note: not everything that we are shown is necessarily how it is/true, this applies to all 5 boys] Louis is also quite an interesting case, we saw him get progressively quieter as time went on, especially in comparison to how he was in 2010/11, [many fans who believe in Larry attribute this to him being pushed into the closet and having to hide his more ‘flamboyant nature’] or it could be a simple case of all the stress and difficult life events taking its toll, or even [I think it's likely] a combination of all of this. Either way, it has been disheartening to witness.

Zayn has always been the most misunderstood I think. As Zayn himself said, they were all given personas and that has stuck with them from their time in the band, even until this present day I would say, [I wish some would consider this in Liam's case but that's for another post]. If you saw Zayn from 2010/11 he wasn’t particularly ‘mysterious’ or such, in fact, he was quite boisterous and funny if my memory serves me correctly, but again If the management wanted them to have a certain persona they were going to make sure it stuck. Zayn has always kept his private life exactly that, private. Typically in the case of his relationships [I would say this applies to some of Liam's also] but the main times we would hear about Zayn's relationships is if it was to make Zayn out to be a bad guy or to benefit the woman he was dating at the time through PR or some way as such, which is quite telling in itself.

Liam, again, people would think Liam is quite public and we know a lot about him but if you pay close attention, it's not the case at all. We don't know anything other than what we are told by the press or what we see. This is the case for all of them but as we know, from recent videos that Liam has done, there are a lot of other factors at play and a lot of distortion of stories and such that happens that we will never truly understand, we can only look out for it.  [another side note: IMO Liam is the full package he’s got the vocal range, the lyrical range, the melodies the dance moves, the fashion but he got so sabotaged and that pisses me off so much.]  Liam had always been the spokesperson for One Direction whilst in the band. Some people, particularly some groups of ‘fans’ or newer fans think that all his talking about 1D is him ‘trying too hard’ or whatever else to bash him. But the truth is, if you look closer, he never really stopped being the spokesperson for the band. He speaks on all of their solo endeavours, all of their achievements, indulges the nostalgic fans and is the one who most openly shows his support, he still holds the role of the spokesperson, just in a different manner. 

At a point you would seldom hear them talk about their One Direction days, unless you are the spokesperson... [it has become more frequent now], which is understandable as they are now Solo artists and perhaps wanting away from that image, but it is also quite curious in a way. But that is best left for another ramble. However, up until recently, I feel like the boys who have spoken the most about the band have been, in a sense, allocated to speak more on the topic than others [Personally I link this to the Politics comment, I’ll explain a little later on] But I find it interesting as to the different reactions we get from certain groups about each member when they do speak about their time in One Direction. Typically, Harry and Niall are met with positive reactions, with a few exceptions of course. Zayn sits in between, some of it gets regarded with nostalgia, other reactions are positive and hopeful and then the outright negativity too. Louis again sits in the middle. Liam however, you do of course get nostalgia and of course positive reactions from his fans and some OT5 fans. However, this is severely outweighed by the negativity he receives for it from *certain* ‘fans’ and some newer fans and just general people who like to jump on the hate bandwagon [side note: my god I miss 2013/2014 1D Twitter].

I’m not sure how many remember ‘Weed Gate’, how this was in a way at the time ‘damaging’ to the clean image they had and how much shit it was speculated to have caused behind the scenes, involving Zayn and Louis. 

Louis and Zayn take a video doing weed in a car in one of the Peru (where weed isn’t illegal) on tour, there started some articles that make it sound like Zayn was sick or addicted to drugs. I feel like this was also a big player in how things turned out, Zayn took most of the heat from this and from our end it looked like no one did a thing to help. [We don't know what happened BTS]. Particularly interesting from this headline was the reiterating of the ‘squeaky clean image’, not long after this there were articles about 1D not getting along that came out of nowhere, particularly about how Harry was really angry with them and such. Even more interestingly disgustingly, Zayn took on most of the heat from this despite Louis also being in the video. 

Not long after this, Zayn missed some promo interviews and the album release in Orlando because of 'illness’, they get asked on the Today show if it’s actually because of drugs [entirely inappropriate] Liam, [looking pissed] reiterated it was a stomach bug. it would also be poignant to point out that Zayn looked very unwell at the time [I would think this would be regarding the eating disorder he previously mentioned] but many thought and press stated it as being related to drugs. At the time he was also, as he did throughout his time in the band, until this very day in fact, received disgusting prejudice and hate based on his religion and ethnicity. 

To touch lightly on the politics comment: obviously, we won't know the full extent. But if one were to speculate on the matter; we know certain people had been trying to pinch Harry since pretty early on in the band, so it would make sense that some of the comments Zayn made about the contracts make a lot of sense, I feel like it also links well with what Louis said about Harry calling the Hiatus. 

‘Certain people didn’t want to sign contracts,’ This line is so vague, but at the same time, I feel like it could be linked to a number of things. It could have been Harry wanting to leave to go solo. If you believe in Larry and Ziam it could have been a harsher contract regarding keeping them hidden with more shit attached. It could have been regarding the music they make, ridiculous NDA’s or any number of things, the speculation could be endless. However, it further reiterates the point that we can never understand fully what was at play behind the scenes, as much as we would like. But one thing we did see was how the boys went from being seemingly happy, excited and relatively carefree to burdened, exhausted and jaded which is somewhat self-explanatory [fuck 1DHQ]. I was going to add a bit about their images regarding the politics but I believe that is best left for another post.

If you think the boys are free/ ever have been, I’m sorry to burst your bubble but I doubt that has ever been the case, be that within the band or as solo artists. Feel free to check out this post if you require more insight, https://www.tumblr.com/yaz-the-spaz/662781923367747584?source=share. I don't think we could ever understand, nor will we ever know the extent of what the boys were/ have been put through. Hence why they all say they have a special bond because only they understand. I feel as though villainizing any particular member is very harmful, because at the end of the day at the time they were kids doing something so amazing that hadn't really been done on that scale before. What I do find gross is the fact that some refuse to speak up about the unnecessary hate certain groups give to other members [that again is another post entirely]. At the same time, it is important to remember whilst it might seem like other members have more freedom than others, which could be the case, it doesn't mean any of them are entirely free.

I’d say back to my point, but I wasn't particularly trying to make one in this post, this was simply an info/ speculative ramble, you don't have to agree with what has been said. But if you did read through, I’d love to, respectfully, of course, hear your thoughts, and opinions on everything. I will make posts on everything I’ve said requires its own post because I feel as though there is a lot to talk about on a number of topics so they will come in due time. 

At the end of the day, as Zayn [and Liam in the past] said; “You know, we’ve done crazy things with each other and that nobody else in the world will ever understand or have them. Experiences that we've shared.”

But yeah, all in all, it was good to hear Zayn talk about his chickens and describe himself as a chill, funny and loving guy because it's so much more true to him than being painted as mysterious and I love that for him.

[lifeinkinder]

I'm going to do some rambling/processing of Little Man's second opinion and just general medical stuff.

His second opinion was wonderful. And I'm not just saying that because I needed it to be good because I didn't feel comfortable where he was supposed to have surgery.

He has had a ton of EKGs and echos. Like so so many. But the treatment of him during those procedures told me already we were in the right place. The person who did the EKG was so careful with him. She didn't want to touch him because her hands were cold and she didn't want him to get cold. She was so worried about pinching him with the leads. And she used an adhesive removal pad to take the stickies off. When I tell you that in all the times he's had an EKG that's never happened, I mean it. Usually, they just peel the stickies off and go about their life.

Then came the echo. The tech who did that was AMAZING. She pushed the stroller so I could carry little man instead of doing both. She was super mindful of making sure I knew where I could sit and making sure I was comfortable. She explained everything she was doing to me as she was doing it. Which, like again, he's had a LOT of echos, both pre and postnatally so wasn't necessary. She talked to him, soothed him when he seemed like he was going to fuss. I made a comment near the end, mostly to him, that it looked like he was getting upset. And she immediately stopped. She was like does he need a break and I said no, we've still got like 5-10 minutes. Sure enough near the end of that 10 minutes, he lost it and she immediately stopped. She was like you hold him, I'll go show the pictures to the doctor and see if we need anymore. She turned down the lights and left. Then when she came back in with another tech because more images were needed, they spoke in whispers because little man was asleep. And the 2nd tech sat on the bed so I could hold him while he slept and they got the images they needed. I've never...we've never...he's never been treated that way. Usually when he gets an echo, the tech doesn't interact with him at all. Unless I'm talking to him, the room is completely silent (because they don't even turn on the TV for him and not that I want him to have screen time, but I feel like it's a called for distraction when echos are an hour long and he has to be still and not cry).

When we saw the cardiologist, she addressed 80% of my questions before I even asked them.

I asked specifically about the stent he got in June. At his follow up for that stent, his cardiologist said they wanted to do the repair 6-8 weeks after it was placed because of how deep in his right ventricle it was. But that isn't what she put in her visit notes so I reached out to her about it and she basically said we didn't have that conversation and what she meant was repair at 6-8 months (which had always been the plan). The cardiologist at this second opinion said, no it's a concern. It's nearly touching his tricuspid valve. It hasn't caused damage yet, but if we leave it in and don't repair soon, damage could happen. And she validated my frustration with the conflicting info regarding that stent!

He's actually the perfect weight for repair. Waiting until he's 18 lbs (the original hospital's plan) doesn't change the risk level at all. In fact if we did wait, we might increase the risk because of the location of stent 3. Plus there is some neurodevelopment research that I don't even pretend to understand that supports earlier repair for complex congenital heart defects (which tetralogy is).

So we're switching hospitals for surgery. And he'll have his full repair by the end of October. He should be in patient for about 5 days if all goes well, but we'll talk about the risks at his pre-op appointment. They think the surgery will go well and that he'll recover well, but of course, I'm concerned because it's open heart surgery on my 6 month old.

I am so glad I got this second opinion. The drive was fine. I got lost once when we got to Chicago because my GPS decided to turn itself off. And then once leaving Lurie because my GPS kept refreshing my route like even when I was stopped at stop lights. So then I ended up on Lower Wacker which was awful. And more stressful because my GPS was like turn here, turn here, turn here. And like that's not an option because those streets aren't streets here in this underground road you led me to. Once we were out of Chicago, it was fine. Little Man was DONE and cried pretty much for an hour of the drive. He was overtired but wouldn't go to sleep and I couldn't do anything really because we'd already stopped 3 times.

[unapologeticallyzayn]

Whew! Alex really went there about the 2021 incident! I couldn't break this apart because of the weight of it.

Things of note said here are as follows:

Zayn didn't feel it was important for him to have a back and forth with someone he calls "her" online because a. he didn't want Khai to read about it later b. the situation and disagreement didn't need an entire audience c. it was a family matter and it was important and still remains so that he keeps it in the family.

Zayn says he doesn't get involved in discussions online whether they have something to do with him or not because the most valuable thing he has is time and he doesn't want to spend it in such a toxic environment. He doesn't want to spend that time explaining himself to people or to justify things.

He says he knows what the situation was, "I knew what happened" and the people involved knew what happened too and that's all he really cares about.

He also says that if "anybody of the same mind were to look at the situation' they would respect it for what it was. He just didn't want to bring attention to it. He believes that he eventually dealt with it in an amicable way.

Zayn has 50% per cent custody of his daughter. He doesn't need to be supervised to visit his daughter and he can hang out with Khai alone.

It is also HEAVILY IMPLIED IN THIS SECTION that some things were blown out of proportion and that some of the things that floated online/ in the media were untrue because if it were true those "things'" would have affected his chances of custody. I would like to repeat this part so there's no misunderstanding, it is HEAVILY IMPLIED!

Zayn also says here that if he could get 60% he would take it.

I also have to say here that this is where Alex pushed. She begins by saying that given the objective of her podcast, which is to empower women, she wouldn't be doing her job if she didn't ask these questions. Zayn doesn't giggle once in this section.

[pengumi12]

Congenital Heart Defect Awareness

[osokasstuff]

i want to have more representation of people with congenital heart defects.

i have a congenital heart defect, and i've known about it for my whole life, and i've never felt represented.

it's not rare (rare conditions deserve representation, too!), it's kinda 2% of children are born with congenital heart defects, but like. where we are? oh i forgot. we either die in early childhood or get surgery and become perfectly healthy (tm). /sarcasm

when i look for media about characters with congenital heart defects, it's either tragedy (tm) or inspiration porn. when i look for experiences of people with congenital heart defects, it's either parents of children with chd (i don't mind of caregivers being in disabled spaces, but a) i wanna see actual people with chd too; b) their discussions are from parents to parents, so they don't center living experiences of people with chd and it's not all what i looking for; c) some of them are ableist), or medical articles, or tragedy stories (tm) centering struggles of caregivers of people with chd, or inspiration porn, and very rarely actual people with chd being people and talking about their experiences.

like. i wanna awareness and acceptance. i wanna stuff like for some others disabilities, i wanna "nothing about us without us," i wanna pride, fuck, i even agree on discourse (/half-jokingly), i wanna something besides radio silence!

there is tons of info! there is tons of shit to debunk, there are tons of questions to consider, there are tons of overlaps and comorbidities and intersections! (what am i doing i'm literally promoting talks about chds to online community. here lack of representations can get you. /jokingly)

do you know that chds aren't rare? do you know that surgery (tm) doesn't make you perfectly healthy? do you know that surgery isn't always performed on infants/younger children? do you know that surgery isn't always necessary? do you know that lots of us have to undergo several surgeries, sometimes lots of surgeries? do you know that lots of us have other disabilities, congenital or acquired? do you know that surgeries (tm) cause complications (tm)? do you know that lots of chromosomal conditions are associated with/directly causing chds? everyone knows that autism often co-occures, if not causes, the digestive issues, but do you know about high comorbidity of autism and chds? (maybe i overestimate awareness about autism & digestive issues overlap. i'm sorry if it's so. it wasn't intended to erase someone's experience. i just often see talks about autism & digestive issues in popular autism advocacy and never see any mentions of chds. i don't know how to word it better. i recognize we still need to raise awareness about autism & digestive issues comorbidity, especially awareness that doesn't center lsn perspective. i appreciate work of autism & digestive issues comorbidity advocates. i simply mean that we need autism & chd awareness and advocacy too). do you know that anesthesia may cause brain damage? do you know that connective tissue disorders have a huge comorbidity with chds because the cardiovascular system contains lots of connective tissue?

do you know that infectious diseases are dangerous for us because we can get heart complications? do you know that we are often immunocompromised because of our chds?

do you know about ableism towards us? do you know about the idea that heart problems are something for elder people and not for children/teenagers/young adults? do you know how anti-fatness stereotypes and narratives affect us and frame our experiences? do you know that heart problems are often framed as personal fault and failure, as a result of having a "bad lifestyle?" do you know how extremely healthist the society attitude towards heart conditions is? do you know that, while heart conditions are often framed as something "extremely serious," our struggles are often overlooked, denied, and erased because of assumptions around this idea (children can't be disabled, children can't have something serious (tm), chds are only for children so adults can't have them (if you have chd, when you get 18 yo, you explode, i assume /sarcasm), surgery (tm) completely fixes us (tm), so if we have some symptoms after surgery, no we don't, and more more more).

i can elaborate endlessly. i think i'll make other posts about some experiences with having a chd. so stay with me if you wanna read more.

[alaydabug2]

Cute outfit and the perfect one to show off my scar ☺️

[copperphillips]

Hi my name is Copper Phillips and I was born with a congenital heart defect called Hypo plastic left heart syndrome I have just recently been wanting to learn more about it and the ways it effects me personally. I live a pretty normal life I have an amazing boyfriend and amazing friends and I am pretty lazy but that’s not because of the Hlhs that’s just me being a teenager, I just got a job and I would say I’m doing pretty well and I am so blessed and grateful to be doing so well. I have been getting pains recently, when I say recently I mean in the last month or two that I was to scared to tell my mom, I felt like I couldn’t tell her because it would make it real and I didn’t want that trama and horrible memories to come back but I have a best friend who I am so grateful for to give me that little bit of tough love and he definitely helped me tell my mom she reacted exactly how I imagined and my step dad kinda took over the convo but I still haven’t told my dad as In bio dad and I’m definitely not ready to tell him I don’t really know how to respond to him when he’s emotional but I will try to keep updating.

If you have any questions or things to tell me I would love to listen and answer

[y2ksnowglobe]

Having dextrocardia is weird for a lot of reasons, but my favorite one is that whenever I see representation of it in media I'm just "Oh...this person is gonna get shot or stabbed."

[hurricanehiatus]

Being chronically ill sucks ass.