#like!!!! she was neglected and ignored and she DIDN'T THINK IT WAS PERMANENT she DIDN'T THINK IT WAS PERMANENT

[sergeantsporks]

Sometimes I remember how everyone acted about Lilith and I get so mad. Lol.

[moonlit-positivity]

So theres this thing that can happen when you're growing up with abusive, controlling, invasive, neglectful, and otherwise just cruel parents and other adults around you. So when you're still a kid, a minor at least (under 18 in the US), there can be times when you start telling other people like your friends or teachers at school etc, the kinds of things you're going through at home. And sometimes there's this kind of conflict between outsiders giving you advice and information, vs the chaotic, abusive, and controlling reality that you live in, where if you were to actually do any of that advice it would actually just make the entire situation ten thousand times worse when your abusive parent finds out. Like for instance I once had a teacher tell me it might be better if I were to just run away, and so I did. It did not end well. I went to my gfs house and her mother told me she couldn't in good faith keep me there while I was underage, so she drove me back home and when I got home the cops were at my house waiting for me because my mother had called them. And because of that my mother would often times call the cops on me in college to do "wellness checks" if I didn't call her every hour on the hour. All the while, as a minor I'm getting beat and r*ped while my mother is drunk out of her mind 24/7. And I see this talked about sometimes, but the notion of mandated reporting didn't exist in my city in the early 2000's, and even if it did CPS & foster systems can be equally as abusive and fucked to go through. So if you're in that kind of position, the one thing I have learned from my 20+ years of abusive parenting ruining my life is that your intuition is gonna save you time and time again. Trust it. Sometimes advice from others can be good advice, like yeah you probably should run away. But can you realistically do that in a way that's gonna guarantee your safe and permanent escape? Probably not as a minor. It's not really a situation where outside advice may always be the best decision to make, even if it is in good faith. You know your home environment way better than anyone else. Your senses and your nervous system is already attuned perfectly to your chaos. And it SUCKS that there are no other options except "wait until you're 18 and then leave", because that is STILL problematic as fuck when your abusive parents already control every aspect to your life. Leaving abusive parents is one of the hardest mf things in this world and I don't think that is talked about enough! There is definitely not enough conversations on the minute details of, okay so HOW do I get out? Safely and permanently? Where do I go? Where do I live? How do I eat? And what do I do once the PTSD kicks in? Because no one ever talks about that either. And people who have never been in an abusive situation a day in their life think they may be doing well by giving advice, but unless them mfs are willing to either house you from the abuse themselves or help you find shelter and resources then many many times their advice comes from a place of ignorance and it shows.

[tadpolesonalgae]

i know i have too many thoughts about cbmthy but i just saw that ask where op said they wonder how long until the ic notices reader is gone and it made me think as well. i've been giving them the benefit of the doubt for the last chapters but this ask just made go back to my "the ic is being mean to her" bullshit. i love the ic but in this story i really feel like they need to step up with her and i hope they apologize when she comes back. i've seen you say you don't mean to make the ic neglect her but they do. and even if she herseld doesn't see it as being neglectful it is. just because she likes being alone it isn't enough reason for how isolated she is from them and i get that she doesn't wanna be a bother so she didn't want to say anything to them but her being comfortable going to eris just makes me not want her to go back to the ic permanently. i think the worst is that this is years after she got turned so she's been in this state for years and no one did anything, like i know they had their hands full with wars and nesta and nyx and koschei but it's not fair that they just ignored her in favor of those problems and even worse that she was always the one being left behind. with the way you've written her it wouldn't take more than a good look at her to see the mess she was in. i remembered the conversation between nesta and elain too so i know the ic or at least nesta want to do something about her but elain was wrong by not letting her. i'll stick with my opinion from the last chapter too though, her dipping on the ic is also bad on her part as well because it's a shitty thing to do to her family but that just makes me go back to the core issue which is her and the ic don't trust each other or even look like they care much for each other, they don't act like they're family.

i know this is a popular opinion but i really think that after she heals and grows it would make more sense for her to stay with eris than with azriel. she wasn't thriving at all in the night court and there's not really much of a reason or even tension between her and azriel, it just reads like she loves him out of habit, like she always had that crush on him and since she hates change she won't let go of it even if he hurts her. but i know you said you wanted her to stay in velaris and be with azriel so i just hope you take into account that these people couldn't help her when she was at her lowest and treated her like a second thought so when she comes back healed and stronger you kind of have to be careful of how you write things so it doesn't seem like they only care about her now that she's strong and useful. also with healing come a lot of realizations, the most important being the people who helped you and the ones that didn't so when she finally reaches that stage i hope she tells the ic exactly that. i also see the ic having some trust issues with her though, they don't trust eris (for good reason too, eris kind of makes sure of it) so when she comes back after hiding so much from them and from being with eris it's normal for the trust issues to come

im sorry if i talk too much about this series but i can see myself in some things and it kind of hits harder for it. also tell me if im being pushy because im genuinely just trying to get my opinions across not trying to make you feel like you have to write this or that a certain way - 🧶

‘i know i have too many thoughts about cbmthy’

You literally don’t, I love getting to hear all of them so it’s not too much 😭

‘i just saw that ask where op said they wonder how long until the ic notices reader is gone’

Honestly it’s going to be pretty promptly because of the whole magic and prophecy situation? With Azriel knowing what he does now about how her power hurts her, and that she’s going to kill him, it would be weird for him to not call a meeting with the rest of the IC, which then will lead to Azzie realising she isn’t in the HoW and going to search for her :)

In regards for how long it’ll take for him to find out she’s actually gone to the Autumn Court, I’m going to try and have it also happen in the next chapter because otherwise I feel like that could be the story beginning to drag again and I really do not want that 😭

‘i've been giving them the benefit of the doubt for the last chapters but this ask just made go back to my "the ic is being mean to her" bullshit.’

Okay this is so difficult to respond to (for spoiler reasons, not emotional ones) but there is some casual stuff going on in the background that’s keeping them a little away from her? Also since they trust Elain’s judgement on reader as the one who’s closest to her, because Elain made a bad call about what she needs, that’s also getting in the way and contributing to how the IC act around her?

‘i love the ic but in this story i really feel like they need to step up with her and i hope they apologize when she comes back.’

I have actually already begun to write this scene! The idea for the dialogue came probably around a month and a half ago and I’ve just been adding bits and pieces to it since then to help me try and prepare when the time comes for that part of the story to unfold? Either way it’s probably going to be quite taxing for everyone in that conversation so it’s a little stressful to write, but it’s got to happen eventually so things can start looking up after so long 🤦

‘but her being comfortable going to eris just makes me not want her to go back to the ic permanently.’

This is actually one of the few topics in cbmthy that I’m excited to write/discuss? There’s hopefully going to be a patch of dialogue where Eris brings up how messed up that is (satirically, of course🙄) and that will be touched on! I’m both hoping and not hoping that it’s something some other people will be able to understand since I think it’s kind of difficult to explain why it’s sometimes the case one doesn’t want/feel they deserve help?

‘i know they had their hands full with wars and nesta and nyx and koschei but it's not fair that they just ignored her in favor of those problems and even worse that she was always the one being left behind.’

With this theme it’s going to be kind of difficult, because for this particular issue to be resolved it’s going to take reader understanding that she didn’t deserve that, whether it was intentional or not, and that is going to be a big step for her.

I think it’s quite simple to be angry or upset on other people’s behalf, but standing up for yourself can be so difficult when you don’t want to be seen or cause a mess? When others are being treated badly it’s obvious that they don’t deserve it, but when you’re the one on the receiving end it’s so easy to slip into the mindset of “it didn’t hurt me that bad” or “I don’t want to overreact to something small” so reader has to first overcome that before she and the IC can have that talk?

Even if the IC were the ones to initiate that conversation, we’ve already seen in part 6 when Azriel tried to apologise that she just cuts it short because she doesn’t feel like she deserves that, which is why I think she needs to go spend some time with Eris for a little to get a blunter point of view! 🧡💛

‘i remembered the conversation between nesta and elain too so i know the ic or at least nesta want to do something about her but elain was wrong by not letting her.’

Honestly whoever suggested the multiple points of view really saved the day with that one 🫣

Elain didn’t make the right call with that, despite thinking it was what was best for her, which just adds to the pile of issues building between reader and the IC, so there’s a lot to deal with already without the mess of her magic, Eris, and some other things on the IC’s side. Also, while there is going to be a conversation discussing the whole Eris thing, obviously it’s not all going to be magically resolved after a single chat, no matter what? There’s still going to be a lot to sort through between her and Azriel after the Eris moment happens, so that’ll be a boat load of fun to tackle 🫠

‘i'll stick with my opinion from the last chapter too though, her dipping on the ic is also bad on her part as well because it's a shitty thing to do to her family’

I’m glad you’re keeping that stance because yes the IC hasn’t been great with her, but she also has just made a pretty bad decision to deliberately go straight to someone she knows they have bad blood with (and for good reason as far as we know from the books)

‘it just reads like she loves him out of habit, like she always had that crush on him and since she hates change she won't let go of it even if he hurts her.’

That is a big part of Can’t Bring Myself To Hate You—the whole doing things habitually without questioning it? Her beginning to make her own decisions and come to her own conclusions (and making mistakes in the process) is something I’m personally enjoying getting to write about (even if it isn’t the best)!

‘so when she comes back healed and stronger you kind of have to be careful of how you write things so it doesn't seem like they only care about her now that she's strong and useful.’

That’s something I’m worried about, but she does have a lot to work on and heal, which her and Az should get a chance to work together on and have some moments of realisation 🧡💛

‘im sorry if i talk too much about this series but i can see myself in some things and it kind of hits harder for it.’

I literally love getting to read your thoughts on this story. Not only is it helpful to hear things you like or things you’re concerned about (like the Eris mess, and fair enough) but it also makes me so happy that you’re so engaged with it? Like that you want to talk about this fic and are interested in it just makes me so happy to read and reply to 🧡💛

[yukidragon]

Hiya Dearie~! Congrats on 900 followers again btw!

Anyways I have this one headcanon of Joseph that I haven't noticeanyone else bring up.

Joseph having physical scars.

Now if this is too serious then you can skip this!

But back to it, Joseph ran away while in high school, he carried a knife and all that, now he's big and strong, there's no way he hasn't gotten into anything physical before. Making me think he has actual scars from said hardships, maybe even some from his home life before he left?

I just this the man would have physical and visible scars, mabe he kinda hides them or something? But ya, that's my personal headcanon...

What are your thoughts my dear?

Awww, thank you so much! You're so sweet! 💖

Don't worry about scars being too serious of a topic. I've dipped my toes into this sort of headcanon before. My MC Alice has one as well, with her Mafia AU counterpart having several.

While we haven't seen any scarring on Jack's naked body even on the teasers posted on the SnaccPop Studios Patreon, that doesn't necessarily mean that Joseph didn't have any scarring. After all, we don't see his tattoos when he's Jack, and he certainly had them as Joseph.

Aside from old sprites shown in the beta version of the demo, the only times we have seen Joseph out of makeup are in this tinted photo, and in teasers where he's dead and probably rotting. While the sprites from the beta show no signs of scarring, the game is still in development and we haven't seen what Joseph's new sprite looks like unclothed.

Obviously we see damage to his body where he's a ghost(?), but we see those same exposed parts in the photo of him out of makeup without any such damage. That isn't to say that there aren't any scars that he's able to hide underneath his clothes.

Now, the fact that Joseph carried a knife around with him does hint that he was prepared to fight, if nothing else. In a picture that Sauce drew and posted publicly on their old twitter, a (presumably) teenage Joseph was shown covered in scrapes and bandages.

While this is technically not canon unless it appears on the Sunny Day Jack twitter, tumblr, or another official game page it would make sense given we have hints that he was a troublemaker.

Credit for the art, as always, goes to the awesome Sauce. Remember, don't share and repost the privately posted content from the Snaccpop Studios Patreon. Let's support the team where we can.

Now... when it comes to Joseph's home life, the only solid hint we have is what the psyche consultant assessed about him. Assuming the consultant was correct, his parents might have said they loved him, but didn't mean it, even early in his life. I suspect that he was neglected, ignored and forgotten, which was why I think he acted up and turned into a punk. Even bad attention is still attention, you know?

That isn't to say that there couldn't have been some abuse going on in his house when he was growing up. It's entirely possible that he learned bad habits from his parents/guardians, which included lashing out at others weaker than them.

Then there was the period of time when Joseph was homeless. The sad truth is that people who have to live life on the streets are constantly in danger. Even if he escaped his hometown unscarred, that doesn't mean he couldn't have been scarred literally and metaphorically while he was struggling to survive on his own.

As for my own personal headcanon on the subject, I can't say that I have any strong inclination either way.

Typically when I add scars to a character, I like to attach a significant moment or change in their life that has affected them permanently. For example, Alice got her scar when Ian cheated on her, and in the Mafia AU her scars were from when she was trafficked.

If I were to give Joseph a scar in any of my writing/headcanons, it would be because I thought of an interesting incident to go with it that I wanted to write and/or mention.

As it is, I'm more inclined not to give Joseph scars, at least none significant enough to make mention of. From a narrative stance, the tattoos serve as scars, which, well, tattoos kind of are already. They are permanent markings made to his skin with a needle. They're scars that say a lot about him, ones he chose to have and regrets now.

Then of course there's the damage his body has taken due to his death, which is reflected in his putrefaction and blood. This state of decay draws far more attention than any scar would, and is a direct reflection of the trauma he faced from his death. So in this case, the zombie-like state would be another type of scarring Joseph suffers from.

These are pretty significant parts of his character. As a writer, I'm concerned that adding more scars might muddle the significance of how the tattoos and the rotting damage/alter his body and affect his mental state.

That isn't to discourage anyone from headcanoning Joseph with scars that he hides under his clothes. Hell, I might come up with an idea later on down the line that enamors me. At the moment though, I would rather keep focus on the mistakes of Joseph's past and his death that have left such a deep scar on him that he chooses to be someone else entirely in the present.

@channydraws @earthgirlaesthetic @sai-of-the-7-stars @cheriihoney @illary-kore @okamiliqueur 

[dohaerislykiri]

Why am I Team Green? Short answer, I support the tradition and customs of that time and respect the precedent that was set by the Great Council of 101. Westoros is not an absolute monarchy. If Viserys wanted to break from tradition he should have done more in codifying a law that allows for 1st born to rule regardless of gender across the kingdom. But he didn't do that. He was only thinking about Rhaenyra.

For me, it's not even about Rhaenrya vs Aegon, and who would be a better ruler. I think both would be/are terrible options mainly due the choices, poor judgment, and decisions they make. Neither were prepared to rule nor took duty seriously. Rhaenyra spent most of her years doing what she wanted on Dragonstone. During the times since being named heir, Rhaenyra did nothing to build or grow her relationships with the lords of the realm. She again used Viserys connections as a proxy instead of laying the groundwork for herself, especially since they were breaking precedent and changing the culture. Aegon was ignored and made to feel unworthy. He had a king for a father, but a father who showed little interest in grooming, raising, and teaching his 1st born son how to lead, politic, or rule. Viserys was a bad father who showed favoritism and exercised neglect. Both Aegon and Rhaenyra probably should have been skipped over with either Aemond or Daeron being the king (let Aegon abdicate and sail away or live his life wherever and Rhaenyra can stay at Dragonstone or go into exile with Daemon).

Being with the Greens does not mean I condone everything they do (because I dont), same if I were Team Black. Neither side are spotless.

I also, don't dislike all the Blacks. I like Jace, Luke, Corlys. Others, I'm indifferent towards at this point in the story.

Being for the Greens IS NOT about Aegon individually for me. He just happened to be the 1st son. It could literally be Aemond or Daeron in Aegon's spot and I'd feel the same.

Speaking of Aemond, he hadn't done anything wrong up until the last scene of episode 10. All the other times he was the one being picked on for not having a dragon, the pig dread incident, being spoken too rudely (it's him), he's the one he gets physically assaulted (by Rhaena and Baela 1st then it's Jace who punches Aemond at the dinner toast). At 10, he gets his eye sliced and permanently blinded, but his own father just ignores it. Viserys in all his weak leadership avoided confronting a problem yet again. Luke should have been punished...stripped of his titles, removed from inheritance, loss of his dragon...something instead of nothing. Viserys inaction solidified the division between the family. The Greens saw that their lives and safety is secondary and not important when it comes to Rhaenrya and the Blacks.

The Strong boys got dealt a crappy hand by their mother...and father... being born in time where bastardy had consequences. It absolutely matters. If it didn't matter Rhaenrya, Viserys, and Daemon wouldn't go out of their way to insist on torturing, mutilating, and killing people for speaking the truth. Those are not Laenor's biological children. It's obvious he wasn't that attached because he took the deal to fake his death then abandon the boys. Another selfish act on the behalf of Rhaenyra and Daemon. So the whole "he's the legal father" argument just doesn't hold water.

Same with Aegon, Aemond, and Daeron. Viserys sired Rhaenyra's direct competition. It's not their fault. Despite Viserys saying Rhaenyra is his heir, many in the realm just flat out don't agree with it. If Rhaenyra ascends, her challenge is still alive. Greens saw the problem and wanted to act, Blacks would do the same. With Rhaenyra being the elder sibling, she couldn't even be bothered with establishing a better connection with her younger siblings. She went as far as suggesting 10yo Aemond should be "questioned sharply", meaning tortured. Do I think she would have personally come for them? No. But there are certainly some close to her who would have no problem solving the problem...looking at you Daemon Killagain Targaryen.

Rhaenyra did not visit Viserys for years despite knowing he was sick. Six years she was gone, but returns only because she wanted him to back her in the Driftmark conversation. Then complains about Alicents redecorating. And then they looked at Viserys condition but concluded he didn't need to be on milk of the poppy.

Otto is a villain in a way that any feudal lord who is that close to power would see how much more he could get. Him pushing Alicent seems foul when looking at the situation through modern eyes, but given the time, it's not out of sync with the those customs. Children of nobilty were pawns used to marry for status, security, alliances. If Viserys intention were to not name his children heirs, then he shouldn't have even remarried. But Viserys is weak and passive. Otto saw the door open and went for it. Part of the game. He wasn't wrong to tell Alicent they would come for her sons if Aegon isn't king.

I like Alicent. I like her for her duty and doing what was asked of her. She was already an anxious and stressed young lady, then she becomes queen. She loses a most of her friends and has very few allies. She loves her children, and really has been the main advocate for their well-being when Viserys couldn't be bothered. Sure Otto wants the power, but he's limited in that regard. Criston trains them to be disciplined, effective fighters and warriors.

Criston broke his vows as member of the kings guard sleeping with Rhaenyra. If he got caught, that's death for him. He loses everything. He had to work for his achievements. Rhaenyra was simply born into it. Rhaenyra wouldn't suffer any consequences. He caught feelings, but she just wanted to use him as her f-boy. She broke his heart and part of him died inside and now he's cold and calculating. He was on the brink of death until Alicent saved him. Again, another example of Rhaenyra just being selfish in not caring about who she hurts.

If I step back, what I see happening is a battle of the 2nd sons: Otto vs Daemon; Aemond vs Luke; Daemon vs Aemond; Vaemond vs Luke. In each of those standoffs, I find myself identifying with the Greens more. I'm not blind to seeing the Blacks perspective either. Ultimately, these are all men with no inheritance in a time where inheritance is everything. So they will fight to the death to get it. 💚💚

[dearwysteria]

ignore this, I need to vent. maybe tw for suicide ideation if you actually decide to read though

feeling really exhausted rn from crying and having an argument with my mom...

i just wanna sleep and eat the baguette my dad handed me and the fast food stuff he got me a few days ago but neglected to eat because he got it for me at like 6 pm and I was just ready to pass out from doing homework. It's a bit stale at this point, but I don't really wanna get out of my room and make food.. the store bought baguette is pretty good though...

also my rug and desk is stained in soda right now since my mom decided to slap me twice in the face while I was holding my open bottle of soda. so there's that

she came into my room just a few moments ago and asked me who's fault it was we were having the argument. I said her cause I was not backing down after what she did and the fact she kept telling me to stop crying and that I'm acting like a child. she then gave me a terrible apology, which I just said okay. I did not accept her apology since she is not entitled to. she does this so many times to me when I was younger, it's not as frequent now as it was back then. I can't even remember much of my childhood because of how much I repressed of every single she's done this. I constantly flinched everytime she moved because of how scared I am of being hit. Back then she didn't even apologize.

She only started apologizing because of an incident during an argument last year where I threatened to run away or use a broken light bulb on myself. I didn't break the light bulb with hands, but it broke when she tried to get it out of my hands. I actually have a permanent scar on my finger after that.

we've only had arguments and moments where she hits me when it's about my grades. she holds me on a pedestal to always have high grades and have awards, since when I was younger I would get medals or little trophies. i would get certificates too. even being in a spelling bee as well, which she had me continuously writing a single word one thousand times on paper for me to remember. It was all the words on the list too. I remember she would start screaming at me if I stopped. this was for the Scripps spelling bee, I only made it to a point where I was in a competition against kids from schools nearby mine. for my school I placed 2nd I think, and for the one against other schools I placed 5th.

i haven't faced any ire from my dad, since he's a neutral party in every argument I have with my mom. though there was one time, and this was the only time. this was when I was in middle school, I spent money on books at a book fair without telling my parents. it was refunded when the situation was explained. when we got home though, my dad was angry. it was understandable. when we were inside the house, he grabbed me by the back of my shirt and started dragging me to the point where I was suffocating from my throat being cut off by my own shirt. he then threw me out onto the porch and told me I should just live on my own with the clothes I had on my body.

im not really in an abusive household i don't think so at least, i've been called spoiled before since I do get spoiled and be given things I want. a family member, my niece who's a year younger than me, says it's bribery as to keep me in check. also that I might be spoiled by my parents, but i'm still chained by restrictions. which is fair since even though I'm 17 I'm not allowed to be home alone if they're going someplace far. neither am I allowed to go walk somewhere alone, even if the grocery store is just a few blocks away from my house.

i think a lot about how I want to run away and possibly just die in a ditch somewhere. or how I shouldn't still be alive at this point and that I should have died when I was 13. or when i'm washing the dishes and while I'm cleaning a knife I would think about pressing it into my palm. I think about every time my mom says that if it wasn't for I wouldn't be alive, and how I wished she never gave birth to me.

the only reason I want to keep going on is my close friend who's stuck with me even when every other friend I've had has moved on and made other friends. I keep moving on with the support of the only one in my family who I'm close to, who knows me more than I understand myself, and knows how to keep my secrets. I still live because I want to experience life outside of my mom, I want to my freedom to choose what I want instead of being told of what i should do or how I should do something. I want to pursue my interests and not be told that "i'll grow out of it." I do not want my clothes chosen for me because "it'll look better than what you pick." I do not want to be constantly asked if I am not friends anymore with my one and only friend. I do not want to be told how my only friend will leave me someday. I do not want to be told "you can rely on me" by the very person who has argued against my ideals and has hit me several times before.

[traumasurvivorshelpingsurvivors]

Tw: detailed recounts of abuse/neglect, trauma anniversary, solitary confinement, slight poverty mention, survivors guilt, self doubt (this post might be very heavy)

Just looking to put this into the world somehow, maybe looking for validation? But if what I'm saying isn't valid there's no need.

It's coming up to the three year anniversary of when I left my moms house permanently, the three year anniversary of when I heard rage-screaming downstairs I started recording in case the police needed evidence if I didn't make it out. The three year anniversary of when we lost the house that had been falling apart for years at that point.

We're still in contact, she has another house at this point, and she makes sure to visit all the time and let me know how much she loves me. She brings gifts like new clothes and my favorite food, and it makes me feel so confused and guilty for having cptsd at all. She's like a different person from the one who pinned me against walls to scream at me and didn't allow me to go to school or the doctor or anywhere for years so they wouldn't find out what was happening, who made "outside" a sort of out-of-reach fantasy. The origin of why I'm so claustrophobic. I was hidden away for so long I ended up developing psychosis at age 12 or 13.

Why is she nice now? I'm almost an adult, so I figured maybe she just gets along with adults better than she does with kids. Maybe it's because I can count with my fingers the amount of times I've visited since she kicked me out at 3AM last year for having a medical emergency "she couldn't handle", maybe we're better apart? Or maybe I was just that terrible as a kid. I was a handful.

When I tell others about what happened they always say it sounds like torture and that they wouldn't survive, I've heard stories of other kids who got locked away who ended up succumbing to their circumstances. In my head I'm always thinking I'm lucky to be alive despite everything, but a part of me is also wondering why it had to be me who was one of the lucky ones. Someone who arguably deserved what happened. Someone who, even while locked away, experienced random bursts of kindness from my own abuser? It makes me feel guilty for even talking about this. I'd get banished to a storage room for asking a question while she's in a bad mood but then after a while she'd open the door with hot chocolate made just how I like it if she could afford it.

I don't know if what I experienced was kindness or abuse??? I don't know which one I actually even deserved. I wish she was awful to me all the time so I wouldn't feel awful talking about the bad things she did to me. She's a good person now and I love her but she deprived me of education and medical care for years and occasionally made me fear for my safety and life. But she's so kind? And loving? Im wondering if I was just so bad that I made a kind and loving person into someone who would do stuff like that. I don't know. I'm sorry this got so long.

(please just ignore this if its too long or heavy, I just wanted to get this out there. I'm also hoping I sent this to the right blog now oh god, I hope this is the trauma support blog and not some random person hahaha)

Hey there,

I'm so sorry you went through all of that. No one deserves to be treated like that.

I think that she is getting really worried and scared that she has lost control over you. Since you're almost an adult, you will have more independence and she is trying to keep you in her life.

It can also be an abuse tactic to gaslight you into thinking the abuse wasn't as bad or real at all. She may want to convince you that she's on your side and that you should continue to have contact with her, despite her abuse of you.

You deserve kindness, but you do not have to accept anything from your abuser. Remember that you are allowed to uphold your boundaries. You deserve a safe, healthy, happy life. Here is a page about setting boundaries.

You did not do anything to deserve abuse. Her treatment of you was not okay, at all. You absolutely are not to blame for the abuse she inflicted on you.

I know you're feeling a lot of mixed emotions and confusion. That makes sense. Her behavior is not consistent. Be patient with yourself while you're processing things. Journaling can help you process your thoughts and feelings.

Wishing you well.

- Misa

[itsclydebitches]

"I hate that a woman who didn't want to be a mother is never allowed to be anything other than what Yang sees her as." — excuse me anon? raven didn't Have to become a mother, you're telling me a technologically advanced world like remnant didn't have birth control or abortions? there were a million & one things raven could've done that didn't involve neglecting her newborn or abusing the adult yang grew into. stop with the raven apologism, yeesh.

Like taking the simple statement “But Raven was allowed to leave the Salem fight,” it’s not so much what she did but how she did it. The fact remains that we simply don’t know anything about Yang’s conception, Remnant health care, or the family dynamics involved (who might have wanted a kid straight out of school and who might not), which just leaves us with the action “Raven decided she didn’t want to raise Yang.” Which I have no problem with. That’s adoption. Mother carries a child to term (for whatever reason), decides she doesn’t want to be a mother (for whatever reason), and allows someone else to care for the child, in this case a very loving ex and his new girlfriend/wife. That’s all fine. 

The problem is how Raven treated Yang after that. She didn’t remove herself entirely from the family, which seems to have left Tai and Qrow in the awkward spot of telling Yang, “It’s complicated.” Is your mother coming back? Does she intend to be a part of your life? Does she care about you at all? We don’t know because she ran off with her horrible bandit tribe and only talks to us when she wants something (more on that below). It wasn’t a clean break with a hard, but equally clear story to tell a child: No, your biological mother isn’t a part of your life. Summer is your mother. So please don’t ever, say, go traversing very dangerous woods in an attempt to find her. A clean break would have allowed Yang’s family to definitively say that Raven wasn’t ready/willing/capable of being a part of the family, answering the, “Why did you leave me?” question. 

On the opposite end of the spectrum, Raven didn’t become a non-mother part of Yang’s life either. Which would have been really easy considering she has a portal semblance that takes her right to her family on a whim. She could have been the “complicated” family member who visits every few months, knowing Yang but not being close to her as a mom would. It still would have been hard, but at least it would have created opportunities for them to talk, providing that closure, and likewise given Yang an answer to that question, “Hey, why did you leave?” 

Instead, Raven tried to maintain this in-between status that (clearly) really messed with Yang. She’s not a mother who divorced her husband (or whatever relationship she and Tai had), permanently removing herself from that dynamic. Nor is she someone who divorced Tai but visits when she can, letting Yang have a relationship with both parents. She turned herself into a mystery, even more-so when she decided “Okay I’ll save you ONCE but never again.” How cruel is that? Not just the implication that Yang is only worth saving once, but the act of unexpectedly entering her life at the age of 16 and then leaving again via portal. There she absolutely abandoned Yang, leaving her with those same fears of, “Why aren’t I good enough for you to stick around?” We also know that she uses her family like chess pieces, only calling on them when she thinks it can be beneficial to her - “Can’t a girl just catch up with family?” 

Qrow: Did you know Yang lost her arm?

Raven: That’s not - 

Qrow: Rhetorical question. I know you know. It’s just obnoxious you’d bring up family and then carry on like your own daughter doesn’t exist. 

Raven: I saved her!

Qrow: Once. Because that was your rule, right? Real mom of the year material, sis. 

[Raven proceeds to grab Qrow and demands to know, again, whether Salem has the relic]

Does Yang losing her arm endanger Raven? No. Does it help Raven? No. So right now Raven doesn’t care. She’s going to turn the conversation back to herself: how much power does Salem have and how likely am I to feel the heat for it? 

Raven: I just want to know what we’re up against

Qrow: Which ‘we’ are you referring to? 

Qrow knows that ‘we’ doesn’t include him, or his allies, or the rest of his family - including Yang. The ‘we’ is Raven, first and foremost, and whatever bandits are willing to follow and (in Vernal/the maiden’s case) die for her. She might “lead her people” but so far we’ve only seen her use those people to help keep herself alive. Even if we work under the assumption that both women are outliers (which I don’t think we should), Raven’s people are “killers and thieves.” She leads a group that ransacks others to the extent that it draws grimm and leaves devastation in its wake. This is what Raven’s leadership looks like:  

Her justification? “The weak die. The strong live.” 

Raven thinks she should be supported because they’re family by blood, even though she hasn’t been there for them. Raven thinks she can save Yang once and then be rewarded for it, as if she hasn’t ignored her for the rest of her life. Hell, Raven could have even screwed up throughout Yang’s childhood (she’s human!) but then apologized later, admitting that she hasn’t done right by her. Instead, Raven has two significant conversations with Yang and in both she refuses to take any responsibility for her own actions. Ozpin wasn’t strong enough to beat Salem so she had to abandon everyone. The spring maiden wasn’t strong enough so she had to kill her. Even if Raven’s negligence had been completely unintentional (which I don’t think it was), she hasn’t demonstrated any true remorse for what she’s done to Yang, intentional or otherwise. When something bad happens it’s never her fault. 

If Raven had made a clean break from Yang that would have been fine. If she’d become a part of Yang’s life as something other than her mother that also would have been fine. But Raven uses Yang like a tool. She saves her so she can hold that over Qrow’s head later. She becomes interested in her only when she’s powerful, trying to tempt her into the tribe. Yang isn’t a daughter to Raven, she’s a potential weapon, a shield, or whatever else Raven might need her to be. In the vault, Yang becomes her new decoy target. And if Raven were to ever deem Yang “weak,” she’d abandon her completely, or even kill her as a “mercy.” Like she did with the spring maiden. Like she did with the people of Shion. Like she did with every hero in the story when she decided that supporting Salem had a better chance of resulting in her survival. Raven didn’t abandon Yang because she was a mother who decided she didn’t want a kid. Raven abandoned Yang because she’s stayed in her life just enough to treat her like a tool instead of like a daughter, or even just a stranger. There’s a lot that I don’t trust about Yang’s perspective, but when she says her mom is an abandoning coward? 100% agree. 

[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.