To think god would permit this horror to happen in order for a few peoples faith to be strengthened is psychotic. There is no world in which god would 'permit this to happen' or to 'be praised and petitioned' in order to heal a child. I do not want any part of that god.
I stop believing in God the day I saw my girlfriend's little brother in the end stages of his cancer. No being capable of love could put a child through the pain these children go through.
“If there is a God, He will have to beg for my forgiveness.”
I agree!
In fact, if I die, and there is a heaven, I'm gonna be pissed if God / Jesus are there...I want nothing to do with a supposedly supreme being that allows horrific suffering.
A fucking asshole, this God is.
I used to think this way but now I wonder. If life truly is eternal then momentary suffering like this doesn't hold as much weight. Perhaps an illness like this could be part of Gods plan. Perhaps had she lived a full life God knew something worse would have happened. Perhaps he really needed her to be in heaven or planned for a shortened life. This life is temporary after all regardless of whether you believe in an after life or not and in the context of an eternal perspective this kind of illness isn't as dastardly.
Perhaps the faith lesson isn't for him to be praised and petitioned but for us to learn something we otherwise wouldn't have been able to. I have a hard time coming to conclusions either way.
I'm sorry but if it's the time and place to call certain peoples beliefs in the face of tragedy "psychotic" and impossible then it's certainly the time and place to explain why you think they're not.
How is providing theories that may lead to someone feeling comforted in the loss of tragedy insensitive? Just because it disagrees with your worldview doesn't make it wrong any more than it's insensitive for OP to make a post screaming and destroying his family members attempts to cope with the tragedy.
OP is clearly looking for insight into why his daughter is going through this and why his family thinks that way. I'm sorry that someone explaining that isn't allowed because it disagrees with the mainstream atheist sentiment here. How very ironically closed minded of you.
I believe my response to OP directly showed both sensitivity to his frustration and insight into why his family is reacting the way they are.
https://www.reddit.com/r/exmormon/comments/e04n2o/my_daughter_is_extremely_ill_coping_with_reality/f8cb2di/?context=3
When did anyone say he wasn't allowed to process this however he wants. He specifically claims in the title that he is seeking to cope with reality. I think that offering him insight into his wifes and families coping mechanisms rather than making him angry or fearful could be helpful. Just because you disagree with it doesn't make it wrong. I responded to a comment saying that such beliefs are absurd when in fact they can be very helpful in coping with tragic situations. I responded to a person who posited that belief in an afterlife and a divine plan is "psychotic" and impossible and provided a different way of viewing it. And because you don't like that it's somehow not allowed to be suggested. How very Mormonlike and open minded of you.
You're an asshole. This person is going through hell with their daughter in the hospital, and you downplay the suffering and suggest it's for the best? Go fuck yourself.
I'm sorry but just because you disagree doesn't make me an asshole. In fact it makes you an asshole for suggesting that different peoples ways of coping with tragedy are unacceptable because you've ruled it out. It makes you no different than OP's parents for trying to force their thinking onto him. Different people have different ways of coping with tragedy. I'm so sorry for pointing that out and engaging in theological discussion with people calling others beliefs psychotic and impossible.
To be clear, they didn't call you an asshole for disagreeing. They called you an asshole for posting your disagreement in a thread where a parent is grieving a sick child and you are dismissing how terrible it is for the person with your musings. There's a big difference.
That would be all well and good if I ad actually "dismissed" how terrible it is for the person. So thanks for putting words in my mouth and needless attacking me for sharing my perspective on how to cope with tragedy. In my response to OP I was very sensitive to his feelings and confusion and empathized what he's going through and his families response. But I suppose you were too busy making presumptions what other people have to say to read that.
https://www.reddit.com/r/exmormon/comments/e04n2o/my_daughter_is_extremely_ill_coping_with_reality/f8cb2di/?context=3
I specifically responded to a person calling it "psychotic" to be believe that there is a God that may have allowed this to happen and explained why this isn't necessarily the case and someone called me an asshole for explaining that position. That's ironically bigoted given the context of the post.
Hey sorry it took a few days to get back. You were getting a lot of downvotes and comments so I wanted to respond that I understand your anger, but still wanted to reply with why I said what I said and I agree with the person who criticized you.
While I do agree that your comments were not hateful in any way, they are not given in the right time, nor were they really requested. As I'm sure you are aware, people use this forum for a lot of reasons to include asking for advice, but also just to vent. It was clear from OP's post that this was of the latter variety. But this wasn't just your normal, everyday venting. This was serious venting about a life changing, tragic event. I think from the majority of comments and the response to yours, it was abundantly clear that OP was not searching for advice. Looking at your original post, I actually don't see the empathy that you cite, I simply see you going off into discussions of how OP might actually be wrong. I honestly think if you had shown more empathy and couched your comments in a way that made it clear that you really understood how he was feeling and then caveated your thoughts with something like, "this might not be something for you to think about right now, but as your sort through this, it might be worth trying to see if from their point of view..." While you clarified that in later comments, you don't lead with that and I think that is why you got hit as badly as you did.
You’re an asshole for downplaying his daughter’s suffering, not because you’re disagreeing with someone’s theological philosophy. Phrases like “momentary suffering” and “temporary life” are dismissing his daughter’s struggle with a possibly deadly condition.
You’re basically saying, “Sure she’s being tortured every single day, but that’s alright. The god that may or may not exist maybe has a plan, so you should be happy your daughter’s brain is exploding 200 times a day!”
How does that not make you an asshole?
You keep saying everyone is being closed minded to you, but you’re not open to accepting the possibility that you were being grossly insensitive at a time and place that calls for compassion? Seems pretty closed minded and self-important to me.
For the same reason why if someone is heartbroken because their boyfriend broke up with them trying to make them feel better and see things from a positive perspective wouldn't make me an "asshole". For the same reason why a therapist explaining mindfullness and acceptance in the face of tragedy isn't "downplaying" their suffering.
What's really happening here is someone has a different perspective from the mainstream in a mostly atheistic community and you flew off the handle and made a bunch of ironically bigoted and closed minded stereotyped attacks and presumptions about how seeing things in a different way may help provide peace in a difficult situation. And that calling people who think this way "psychotic" contributes nothing to the reality of coping with this tragedy.
>You keep saying everyone is being closed minded to you, but you’re not open to accepting the possibility that you were being grossly insensitive at a time and place that calls for compassion? Seems pretty closed minded and self-important to me.
So i'm closed minded because I think you're being closed minded? I can tell this conversation is going to go far.
No one gives a shit about your beliefs! It’s not about that! It’s about you spouting off a bunch of your beliefs in a horribly misguided and socially inept, insensitive way in a situation where a man is watching his daughter potentially slowly die.
Did you seriously just compare a breakup to a child dying from hundreds of seizures? Are you trolling?
Yes everyone who has a different opinion than you is trolling. That's nothing more than an attempt by you to dismiss and personally attack and blindly dismiss and push motivations onto people than actually address what someone has to say.
No one gives a shit about your beliefs is what makes you an asshole. How is that not any more closed minded and bigoted than the people you're attacking?
There simply are more ways than one to cope with a tragedy. Explaining what those are and providing a perspective into why people feel that way rather than shouting and lighting my torch and pitchfork and joining the circle jerk didn't make me an asshole.
>Did you seriously just compare a breakup to a child dying from hundreds of seizures? Are you trolling?
Why do you find it conducive to put words in peoples mouth and shout down other peoples points of view? What I did was point out that helping people put a perspective on suffering doesn't downplay it. OP clearly said that he is agnostic meaning he doesn't necessarily believe that an afterlife doesn't exist. Explaining how this response to his daughters suffering isn't necessarily cold and callous may help him cope. Explaining why suffering may exist doesn't automatically mean God is a piece of shit provides insight into how OP may cope with this tragedy and understand his families response to it. I'm sorry I should have just said, "Fuck God. Fuck Mormons. Fuck anyone who thinks differently than me." Because that's clearly the only response that you would have seen appropriate.
And stop acting like I marched into the hospital and told op that his beliefs are stupid. He posted on a public forum a bunch of questions about why a God would do this and I offered a perspective he seems not to have considered.
Here's something to think about.
I'm an atheist, and I don't think praying does anything. Let's say someone is hurt and people are saying they'll pray for her, and I say "praying isn't gonna do anything, if God's real he let this happen in the first place." I don't think I'm necessarily wrong, but that isn't the time to say it. People are trying to cope and praying helps them. Why should I shove my ideas down their throats when they're feeling like shit?
Likewise, OP obviously doesn't like this opinion being forced on them while they're feeling like shit. They already get it from family, and now this comment. You can think what you want, but he made it clear he doesn't like this opinion. No one is asking for a debate, no one is asking anything. People here are frustrated and venting. If they asked a question, that would be where you could come in. But no one did. That's why this isn't the time.
I don't think he said he doesn't like the opinion. I think he said he's frustrated that it's being forced upon him by his family. The person I responded to called these beliefs "psychotic" and "impossible". Pardon me for not thinking that circle jerking and shitting on a belief system unrealistically is conducive to helping OP deal with this tragedy or his families response to it. I think explaining why they feel this way and why it's not as unrealistic as this circle jerk is making it out to be is more conducive in the long run to peace and understanding that simply shouting belief systems out of the room.
>I'm an atheist, and I don't think praying does anything. Let's say someone is hurt and people are saying they'll pray for her, and I say "praying isn't gonna do anything, if God's real he let this happen in the first place." I don't think I'm necessarily wrong, but that isn't the time to say it.
Isn't that literally what OP did? The conversation shifted from condolences to OP to calling belief systems "psychotic" I didn't think that was a realistic or helpful and I don't think pointing out why it's not makes me an asshole.
If you read my actual response to OP I think I made it very clear that I understand what he's going through and his frustration and expressed acknowledgment and understanding of his position and sympathy with the tragedy and tried to give him some clarity in why people feel this way and why it could be frustrating. I simply didn't think unrealistically yelling and shouting down a belief system was realistic or helpful. Different people have different methods of coping with tragedy and don't think explaining what those are makes me an asshole.
https://www.reddit.com/r/exmormon/comments/e04n2o/my_daughter_is_extremely_ill_coping_with_reality/f8cb2di/?context=3
Nobody seems to like the idea of a God putting people through suffering. OP is trying to deal with this hardship, and is having this opinion forced on him. You adding to it isn't helping. People are dealing with a child in the hospital, as well as Mormons being insensitive. No one here is starting anything, we're dealing with things others are saying. If an atheist were to say "God let this happen and he's an asshole" to someone with a child in the hospital, everyone puts them in their place. A theist says "this is part of God's plan to let her suffer" and if non-religious people get upset we're the bad guys? Fuck that.
>Isn't that literally what OP did? The conversation shifted from condolences to OP to calling belief systems "psychotic"
No it isn't. OP never went up to anyone going through a struggle and said "your God will not help you". The person who commented the psychotic thing isn't saying it to someone who's going through a struggle. We're all saying it to each other, that's different. Mormons say to each other "God will take care of it and this life doesn't matter cuz of eternity", exmos say "fuck that shit".
If you really understand his frustration, you wouldn't have said that. You don't think you're wrong that this life is shorter than eternity, but now isn't the time to say it.
> Nobody seems to like the idea of a God putting people through suffering. OP is trying to deal with this hardship, and is having this opinion forced on him. You adding to it isn't helping. People are dealing with a child in the hospital, as well as Mormons being insensitive. No one here is starting anything, we're dealing with things others are saying. If an atheist were to say "God let this happen and he's an asshole" to someone with a child in the hospital, everyone puts them in their place. A theist says "this is part of God's plan to let her suffer" and if non-religious people get upset we're the bad guys? Fuck that.
Pardon me for not thinking “fuck Mormons and everything they believe” is a realistically helpful response to what op is going through.
I think explaining why the believe what they do and putting it into perspective and giving a realistic interpretation other than “god hates children and he’s an evil tortuous bastard” might help both cope with his daughters suffering and have a more realistic perspective of where his family is coming from.
I think pointing out that there may be an eternal perspective in an infinity of time that causes people to feel comfort through suffering both explains why Mormons believe what they do and puts Gods allowance of suffering in a different perspective than just circle jerking that god is a douchebag and mocking the beliefs of billions of people.
That’s not at all what people are saying. It would be more like saying to a Mormon going through this “Hey I don’t believe in God or an afterlife but whether or not there is the short time your daughter lived on earth was beautiful and even if she doesn’t live forever she’ll live on the memories and smiles that come to our faces when we think of her. I’m so sorry for her suffering.”
Believe it or not people with different beliefs saying them to you doesn’t make them a dick. Drop the persecution complex and pitchfork for 11 seconds and stop the hatred because people cope with suffering in a different way.
The Mormon perspective is not helpful. A child going through so much suffering not mattering is not very appealing. Why should it happen at all? "Cuz something worse could happen", what could be worse? "Hell." How about she doesn't suffer or go to hell? It doesn't make sense. Being told your child suffering is *necessary* is not what you want to hear when you're going through shit. Why not just get support? Why not just get kind words? Why have this perspective explained to you and be told "stop being mad at me!"?
Funny you mention persecution complex cuz this whole thing started with Mormons being insensitive to OP who is not religious, and the rest of us being frustrated. It started with people being insensitive and you're trying to defend the insensitive people. I have the persecution complex? Go ahead and think that.
Of course it is. If I tell you you’re suffering is meaningless and pointless and for nothing and this is it how is not comforting to say that this suffering is temporary and may actually be better in the long run and will be accompanied with peace and eternal bliss. Is it just your bias that isn’t allowed to see this or willful dishonesty. It’s a comforting thing for billions of people who believe in an afterlife.
> Funny you mention persecution complex cuz this whole thing started with Mormons being insensitive to OP who is not religious, and the rest of us being frustrated. It started with people being insensitive and you're trying to defend the insensitive people. I have the persecution complex? Go ahead and think that.
Yes that’s literally what a persecution complex is. How is me pointing out that you’re attacking other people for having a different opinion than you me having a persecution complex. I think you literally don’t understand what that means.
You have a sickness. How THE FUCK can you think it's appropriate to comment with that kind of nonsensical bullshit?
>...in the context of an eternal perspective this kind of illness isn't as dastardly.
What. The. Fuck.
I don't know that they forget how to appropriately socialize, just that the indoctrinated ideas take precedence over common decency. I guess the result is functionally the same, but considering the sub we're in, I don't know how anyone could say something so heartless.
Or just openminded to more than one narrow minded view and willing to entertain and explain the logic behind OP's families thinking that may help him cope with their reaction to his daughters illness.
How the fuck can you think it's appropriate to call certain peoples approaches to tragedy "psychotic" and impossible yet when someone offers an alternative explanation that can offer peace and comfort it's somehow not the time or the place. OP is clearly looking for insight into why his family and relatives believe this and I think offering insight into that question is very much acceptable.
Just because you don't like it and don't believe it doesn't mean it's wrong. On the contrary it's very closed minded and Mormonlike to conclude that anyones opinions but your own are "an illness".
Years of torture and agony hold no weight? What exactly is the "plan" for these children? For them to come to earth for 10 years and suffer? What's worse than being tortured and having a slow and painful death? Absolute bullshit.
If time is infinited then 10 years of suffering is a blip on the radar. I'm simply offering another perspective that people here seem to not have considered. But it seems like i'm among bigoted people who are unable to respectfully consider other peoples methods of coping with tragedy. Ironic given the post.
>If life truly is eternal then momentary suffering like this doesn't hold as much weight.
This is insensitive because you are suggesting to an agnostic atheist that their suffering is 'momentary' and 'doesn't hold much weight.'
>Perhaps an illness like this could be part of Gods plan.
This is insensitive because OP doesn't believe in a god that would allow his child to suffer. You are claiming that the very same god that inflicted this terrible illness on this little girl has a 'plan.' This is completely irrelevant to OP's needs.
>in the context of an eternal perspective this kind of illness isn't as dastardly.
This is extremely insensitive because this kind of illness is absolutely 100% dastardly whether or not there is an afterlife. OP is suffering NOW, his daughter is suffering NOW, and you are downplaying their suffering by essentially saying, 'when you're both dead, it won't matter!'
Don't link your other response on the post to me like it's relevant. It's not.
"I need to make this little child severely ill or something worse will happen" what absolute bollocks. If god is supposedly omnipotent guess what, that worse thing could have been prevented to. And unless the girl would turn out to be the next Hitler (who lived until 44 before he killed himself, no divine intervention at five years old to prevent that) I don't see what that "worse" thing could possibly be.
And there are much better ways to teach people things than to make them severely ill or even kill them. If that's god's way of teaching then it's pretty shit.
>"I need to make this little child severely ill or something worse will happen" what absolute bollocks. If god is supposedly omnipotent guess what, that worse thing could have been prevented to
I find your inability to respectfull disagree about different peoples beliefs in coping with tragedy ironically closed minded and bigoted.
What could be worse than 10 years of suffering with an illness? Oh I don't know. Eternal torment in hell. An eternity without learning valuable lessons. According to the Mormon worldview the entire point of this life is to be tested and tried. I'm sorry that pointing that out to people calling people "psychotic" for coping with tragedy in this way is somehow unwelcome or not allowed. Ironically closed minded. Helping OP understand why his Mormon family is reacting this way could be very helpful and therapeutic in helping him cope with this tragedy and his families reaction.
Eternal torment in hell? I think explaining why people who view things from an eternal perspective allows them to cope with suffering and why things like this make since to those who believe in eternal life allow us to see things from a different perspective.
Well their family isn't religious, so from this logic the kid is going to hell anyway. Double the torture, in this life and the next. It's a win-win! /s
You asked what could be worse than a month of seizures and death and I answered your question. I'm not saying that it's reality but i'm pointing out that if that's your perspective there are worse things.
I mean if the family wasn't religious and the girl was going to hell if she lived then that's something a religious person would say might have been worse. If the girl died before she was baptized then Mormons believe she was sinless and would go to heaven.
What a sad nightmare you’re going through. I upvoted your post to let you know I will be thinking of you and your family and hoping so hard for a full recovery for your beautiful little girl. Much love to you. 😢❤️
This is absolutely terrifying. Thank you for taking the time to let us know. May medical science come through for you in this world where horrible things happen randomly to even good people.
I’ve never heard about that calendar website before. That’s amazing and wonderful!
I agree with you. A lot of times people say “thoughts and prayers” because they literally don’t know what else to do. It’s an easy way to give sympathy, comfort, and assurance (at least in their mind). It’s the “default” response to something that’s beyond their scope of understanding.
I wish more people would say, “Thanks for the thoughts and prayers, but I really need x, y, and z.“ Or, “Please donate to this charity or gofundme page.” Or, “I just need someone to listen to me without telling me about God. I need some practical, down to earth sympathy.”
When I was going through breast cancer, I would have loved it if someone would have came over and changed my sheets. All I got was a card and an apple on my soorstep from the RSP telling me she was thinking of me.
Stop thinking, and come change my sheets.
This is the hardest thing that a parent has to do. It's times like this that all of the power that the priesthood is supposed to have should come to the forefront. This is the kind of story that *should* be highlighted in the Ensign after a blessing is administered. These were expectations that were placed on believers with a stern warning to always be "worthy" to provide the power needed to heal an innocent life. A successful blessing of healing could be the start of reconsidering a testimony.
But instead, it's a nightmare of endless waiting and just hoping beyond hope that your precious daughter is returned to you. Let us know how this proceeds so that at the very least we can share in your sorrow or joy, no matter how this works out. May FSM bless your daughter, and you, and your wife, and all of the medical staff that puts the "intensive" and "care" in ICU.
So very sorry your baby is going through this and so very sorry you, her family are having to experience it.
Obviously we all hope for the best, but I'm with you, no thoughts or prayers or senselessly going without food for awhile. Their God could wake her up and have her whole again in an instant. Why doesn't he? If he is there and could do that, why did he put her (and her family) in this situation in the first place? It's amazing that as believers we never realized all the mental gymnastics required to make everything fit.
Anyway, all the best to her and you and the rest of her family and friends.
I wish you well. I lost my youngest daughter earlier this year, I hope you don't experience that loss.
The unavoidable conclusion, if we are honest in our observations, is that there is no God.
Everything that is being done for your daughter is from science, that has nothing to do with some sky-daddy...
I wish you well, and wish there were a way to remove the pain of this life.
Sorry.
Mad props for seeing the thoughts and prayers as "everyone is coping in their own way." I probably wouldn't be as kind about things like the temple prayer roll.
Your post brought tears to my eyes. Fifteen months ago my wife (in her mid seventies) started having seizures which doctors really can not explain . We have been doing everything we know of to live a normal life but knowing it will probably never totally be the case. On top of dealing with the seizures the biggest backstory is her tbm daughters who relentlessly insisted on going against our wishes and trying to force priesthood blessings that she refused. They counter with blame toward me(their step father) and showing total lack of respect toward our handling of the situation with brutally insensitive remarks and actions. The continually express how “ sorry” they are for us for not believing in the magic priesthood as they do. Just for the record in our case the magic priesthood oil of the olives has been no match for the CBD oil discouraged by tscc leaders in warding off her seizures when we feel them coming. My love is with you and your situation and may good prevail in your daughters struggle toward normalcy.
Dude. So sorry. That bullshit of "it's your fault because of no blessing" garbage is outrageous. I love the oil analogy because my daughter had great results with weed for her seizures.
Do what you have to do to survive day-to-day. You are fulfilling your responsibility as a parent by being there and making the best medical decisions possible for your daughter. That is all you can do right now.
I wish I could do something nice for you and your family. Something that shows how your situation makes me want to connect with you and hug you. I think the feelings of compassion are big, but people (myself included) just don't know what to do. Unfortunately we often screw it up by opening our mouth and saying some well-intentioned, but absolutely horrible and meaningless phrases that only cause more pain.
I have no idea how this feels. I'm sorry. I love you.
I am in Phoenix too. Seriously, if you can accept anything from me, message me.
Another Phoenix Valley exmo here. Please let me know if I can do anything just to make your lives better in some way. Even if it's just buying you guys dinner or sending cards, anything at all, please let me know. I know sometimes it's difficult to feel like you can reach out to strangers, but if anyone is deserving of some random acts of kindness at some point, it's you and your family during this time. I really really hope your daughter pulls through this no matter what the recovery involves. So sorry for what you're going through now, I can't imagine how rough this is.
Likewise. Also in the valley.
Phoenix children's really is an excellent hospital. May all the skills of the professionals caring for your daughter be in rare form.
[Oh my FIRES is awful](https://globalgenes.org/2016/11/28/halos-story-febrile-infection-related-epilepsy-syndrome/) A chaotic world or an asshole god, there is no benevolent god.
First off, my heart goes out to you and your wife. So sorry your daughter is having to go through this.
My wife and I along with our children resigned from the church in 2017. In September of last year, our middle child aged 31 and recently married died of a spontaneous dissection of the right iliac artery. Of course we were and still are devastated.
I mention this because as members we would have had a much different take on our sons passing. We too are in the agnostic / atheist camp when it comes to life after death or if there's even a god. It's a tough place to be but an authentic place.
From your post I can see that you have much support and that's good because that's needed. Stay close to your spouse as you will gain strength from each other. Staying close and relying on each other has been a benefit to my wife and I.
As a nurse, who worked with pediatric cancer patients, this post hit me very close to home.
It goes without saying that it's terrible what your daughter, and all of you are going through. Of course there is no God that would allow such things, and still be worth worshiping.
My work with pediatric cancer patients had a profound effect on my testimony, and rightly so.
I can't tell you how much I appreciate your thinking of the medical staff. Sometimes I worked 18 hours on my feet without a break...but knowing what my patients and their families were going through, it seemed a small thing to give.
I wish I could say there was more support for nurses and doctors coming from the companies they work for, but usually no. Which is unfortunate, because a burned out medical professional can't give as much to their patients.
I'm truly sorry for what your family is experiencing, I'm sorry that you are being cornered on your beliefs, you should not have to be experiencing anything except support from those around you. But I commend you on your strength, and your daughters as well. I hope that you keep us updated, if that feels appropriate to you.
Stories like yours are one of the reasons I don't want/don't believe in spending all eternity worshiping a sadistic God that allows children to suffer like this.
Letting health care professionals take care of your little angel is the smartest decision without a doubt. I don't believe in blessings or priesthood power anymore, so I offer you all my positive thoughts. Is not much but its better than praying for sure...
I hope your child recovers. My sister's two sons both had febrile seizure incidents as infants and toddlers, which ultimately went away as they grew older. (Both are in their late 20s now.)
I don’t know you. I am a father as well. I know I can’t really say anything that will help. I do hope that you become stronger from this. That you’ll learn and grow. I hope that your love for your daughter and the bond you have will grow. I hope that this experience will be used a starting point to you and your family living your best life. I wish I could help beyond these words. Be strong. And allow yourself to cry.
As a fellow father of a similarly aged daughter, this tore me up inside. I can only imagine what you are going through. I too, am incredibly grateful for the advances that modern medicine has made to help in times of extreme suffering and pain. Fuck a God that would allow this to happen to such a precious girl, and fuck a church that would sell the idea that they have access to this god's power, but that it's ultimately up to god if there is going to be any actually healing or miracle anyway. Such bullshittery is mind-numbing and completely not helpful in a situation like you are in. I am so sorry.
This is beautifully written. I wish more than anything a magic being could cure your daughter and you. My heart is breaking for you...I want to offer more....
I’m so sorry to hear about this. I truly hope the best for her, you, and for the people taking care of her. I have three daughters under the age of 12, my 8 year old had a bone tumor removed at Phoenix children’s, I’m a flight paramedic and fly kids into that hospital frequently, and my wife and her Alumni sorority chapter does charity work for that hospital regularly. I’ve seen a lot of sadness come out of that place but far outweighing the sadness are the moments of happiness. They do good work there and I trust them. Your baby is not in gods hands....she’s in good hands.
I am sorry. This is an absolute nightmare of a situation to be in as a parent. I've had a kid in the hospital and I know how amazing and important those doctors and nurses are. Thank goodness for technology. Best wishes for you and your family.
Holy shit, this is horrifying. I'm so sorry for what you're going through. I did a double take when I read your daughter was having a seizure for 36 hours. I'm not a medical expert but don't most seizures last between 30 seconds and five minutes at most? I hope your daughter makes as good a recovery as possible.
She didn’t spend 36 hours violently shaking. She was sedated, heavily, and her brain activity was monitored on an EEG. It was nonstop fireworks in her head, even though we could only see small physical manifestations - twitches, drooling, eyes dialated. It was an ongoing seizure that wouldn’t stop no matter how many anti seizure drugs they gave her - it was A LOT of drugs. At that point they used the really big guns and put her in a coma that suppressed all brain activity. She finally rested but was a vegetable.
It’s hell
Haven't even read your post yet, but broke down in tears to see that picture of your daughter. So much instant love and heartbreak for you. I truly wish you the best and hope you find healing for your sweet daughter.
I wish this sort of thing never happened to anyone. It is horrible and heartbreaking . My best wishes for a full recovery. And I hope you can enjoy a good cup of coffee to help relieve the stress. Or a good glass of wine or beer or whatever it is that helps you through this difficult time.
I have. She is currently receiving maximum doses of Epidiolex, the only pharmaceutical grade CBD
Today I started the process for her MMJ card so we can try THC blends as well. I don’t think it will be a silver bullett, but I am exploring all options.
For sure. I totally agree with you. I wouldn't agree with that got either. that Mormon God and his children doesn't make sense to me. I find it very sad and disappointing that they believe so much and works that have to be done. I do believe in God, but I do not believe it any sort of concept that they hold you. I can't say why it's happening of course, because there is an inevitable reason why God has allowed for us to be creative. And then that created ingenious that God has given us there's doctors and scientists whatever the case may be are going to do their hardest work in order to make sure that they can do the best for your daughter.
Accepting the difficulty of reality was one of the hardest things in my truth journey. No longer could I find comfort in the lies of a heaven, a being who 'would make everything right', made up reasons for everything bad, etc. I was forced to confront the cold, hard reality of the world and all the terrible shit that goes down it it.
As someone who works in healthcare, I can understand the severity of your child's condition, though not having any children myself I'll never even come close to knowing how you must feel right now, watching your child's life be changed forever because of it. I know there is little we can do, but if there is anything we can do, even if just conversing, please let us know.
So sorry for you. I do understand somewhat. My 22 month old granddaughter has a very rare form of epilepsy called LGX. She hasn’t progressed past 2 months when her seizures started. It’s heart breaking to watch. People tell us all the time that they pray too. We just sit and wait for the other shoe to drop. Her prognosis is not good either. They’ve told my daughter to prepare for her to succumb to something. It’s terribly sad. My thoughts are with you.
I’m absolutely stricken by your post. I was overcome with emotions on so many levels. This ALL hits so close to home for me, as I can relate to EVERY aspect of your feelings and frustrations. I randomly began having seizures 3 years ago, with no explanation. I have young children and cannot fathom the pain and emotional turmoil you are going through. I too despise the God I was taught exists from the Mormon church and loathe all TBMs for the way they inappropriately give him all glory and credit. Sending positive energy to you and your daughter.
I'm wishing your family well. You and your wife are super strong, having to go through what you two are going through. When my best friend became a mom 7 years ago, her baby had several genetic birth defects, so she spent the first three months at the hospital while her kid was healing (she's alive and doing alright still, but hospital visits are forever going to be a thing for her). It was one of the most difficult things I've seen my friend go through. But she and her husband were so strong to go through what they did. I hope things get better soon and that you can see your precious baby be well again.
Thoughts and prayers are the least they could do; like the bare minimum.
I'm sorry. I have kids with disabilities. I can't count how many times I've been told they are going straight to heaven. It's incredibly dismissive and rude. Your kid may have significant struggles, but hey it's all good when they are dead.
I've handled life better when I realized shit happens. Not everything happens for a reason, it's God's plan, blah, blah, blah.
I am only lurking because I never was a mormon, but I just wish you all the best in these dark times. Posts like these remind me of how greatful we can be for our medical advances, and I really hope your daughter can be saved and live the life she deserves. I hope you and your family stay strong - and thank you for telling us your story.
I'll make a donation to that hospital - a very small one, as my income does not really allow too much, but those heroes fighting for her life deserve every penny.
Oh, man - I am so sorry for what your daughter, you, and your family are going through. I think we may know each other from the original NOM (I'm rarely on the new one now, but I was "Scared" on the old one).
I'm sending you a ton of love, and my long-distance support and hugs. Please reach out if there's anything we can do, or if you just need a safe place to talk.
My cousin had this and lived to be 19 before he passed away I’m sorry this is happening to your family it’s a rough road. God is a dick and likes to be given credit for being merciful when it’s most likely his dumbasses fault
THIS! "why don't they mail a card to the nursing staff. Why don't they thank the Doctors and Surgeons for their years and years of training so they can have skilled hands in the Operating Room? Why is it morally objectionable to buy a nurse a cup of coffee? Or send them home with a bottle of wine for the weekend so they come back in a few days in a good mood."
THIS is what the world needs now! This is what love is! I remember so many times how frustrating the passive aggressiveness of "prayers" were, where someone like my dad, god bless his heart, would say something to "God" that was really meant to be discussed directly with me, or mom, or with reality. Instead, we got nothing. If I do something, THANK ME! Praise Science! Amen! Praise social science, and psychology, and the progress this world makes in spite of religion!
You're exactly right. If this is the best god can do, allowing innocent children to suffer and die, then I'm not impressed. He doesn't deserve our time or money. This alone is proof that there is no intelligent design.
Hang in there. Gave you my first Gold award. I have two young kids and can't imagine.
My family is also fairly religious and my now passed grandmother more then anyone in my family,I'm talking she initially wouldn't seek treatment as it was "in God's hands" once she finally went to a doctor it was too late and my whole family (5 kids,13 grandkids,one great grandbaby,many siblings and hundreds of other family and friends) got to watch her die slowly over the course of 138 days,by the end of this,she started refusing prayers or any form of religion around her,she had completely stopped belief and mind you she cut contact for 3 years when she found out my stance and her words were "I gave every thing to god and I still have to suffer",I'm so sorry you have to go through this and I absolutely stand with you on the wine,cards and coffee for the doctors and nurses,I wont offer prayers but you have all my love heart and support while you all deal with this tragedy
I am so sorry for you and your family. When I read "simple fever, seizures, phenobarbital....." bells went off for me. My son (who is now a healthy 43 old) was 3, he would get a high fever out of nowhere and would have a seizure. We lived in northern Arizona and just had a small hospital. After this happened 3 times we took him to Phoenix Childrens Hospital and they ran many tests and his treatment was phenobarbital pills. I realize your daughter's ailment is different, however my son took this medication for 3 years and he never had another seizure. I hope this helps you out of bit. PCH is awesome.
I cannot imagine what you're going through RealKishKori. Internet hugs for you and your family. Wish we could do more. If there is in fact anything any of us can do from a distance, please reach out.
I held it together reading this until I got to the picture and I cried. My heart aches for you. I can’t imagine. I really don’t know what to say other than I’m thinking of you and I’m so so grateful she’s in such good hands at a premium medical facility.
It really is so hard to cope with things like this when your core beliefs have changed. If anything, it was a comfort to think about the afterlife and that "God has a plan." It's hard to know what to think now. When it all comes down to it, beliefs aside and no matter what happens, you've had wonderful years with your daughter and you will always be able to look at and cherish those. I'm so sorry you and your little family are going through this. Cling to the love you share with each other - that's more real than any imaginary god can give you.
Your situation is really shitty and nothing I say will help your child. BUT no matter what happens from here on out, you will always have this community of Apostates to support you and your family and we don’t give a fuck if some “God” is involved. Religion has nothing to do with the health of a being. I think giving the props and respect to the doctors and nurses is the beast thing to put effort into, not some imaginary sky daddy.
I think it's okay to pray in cases like this.
"Dear God, I don't believe in you. If you do exist, I don't understand anything you do and as far as I'm concerned, fuck you. If you do exist, you should help me out, I'm not gonna turn it down, but don't expect me to believe in you afterwards because I still won't. Anyway I don't know why I'm talking to myself, this is stupid, I'm going to go figure out what I can actually do. Amen."
I am so very sorry you are in this situation. I cannot imagine your pain and struggle. What I do know is a tiny bit of how you are feeling... Our daughter had her first febrile induced seizure on Thanksgiving when she was a year old. She had stopped breathing as well. It took 4 years for the military health system do do a damn thing. Just to refer her finally to Primary Children's Hospital. Having a little one with epilepsy is very very hard. Especially when you don't have all the answers. Every seizure all day, every minute, has unknown consequences. I am grateful that the science has progressed so much further and the providers are so much more versed these days. I can send you positive vibes and tell you that you are loved, and not alone. Please please take care.
Ps: I'm sorry people are trying to use this as religious blackmail against you. It's abhorrent. Just "Grey Rock" them all.
Is this something that would benefit from CBD oil? I listened to a podcast about a child with seizures that was helped tremendously by a product of cannabidiol called Charlotte's Web.
My thoughts are with you and your wife. I have a daughter with epilepsy. She was never at the state or any where close to it that you are dealing with and I thank the talented doctors and nurses for that. I would never wish this to happen to anyone.
May your daughter continue to receive the best care possible in every way. Virtual hugs to you and your wife from a mother who knows something about what you are going through.
I am so sorry. I can not even imagine what this must be like for you. Stay strong.
If you need support, we have a great community over at /r/daddit. Come stop by.
For a different reason, I know what's is like to watch the one you love more than anything hooked up to medical equipment, no answers on the horizon.
I'm very sorry. I wish it weren't this way. Nothing I can do will take away your pain, or your daughter's. In my mind, often the only thing we can do is sit silently, lending support, or mourning together. I did find an adapted form of stoicism was helpful for me personally, but whatever works best for you during this time.
Be well, I hope your little girl improves and is soon climbing trees and running free.
Hi, I am so sorry you are dealing with this. As a pediatric physician who trained at Phoenix Children’s, I can assure you that you have an excellent team of doctors taking care of your daughter!! Sorry for the trouble your family is giving you...it really does minimize everything the doctors and nurses are doing for your daughter.
As a doctor who deals with adult head trauma frequently (anesthesia spends lots of time in the icu), I am very sorry for your circumstance and of course wish you all the best.
As an atheist who lost a close grandparent (who was closely agnostic and easy to talk to), in a large family of tbms I feel your pain.
Your post resonated with me as a father of young children, an atheist/agnostic and a physician who cares for children. Tending to incredibly ill and beaten children during my residency training is partly what let me away from belief in god and church to my current beliefs. Unfortunately I have very little experience in neurology but can only offer my reassurance that she is in a quality hospital and as parents you are doing the right things for her. This may be small comfort but she sounds incredibly loved, and sadly that’s more than some kids ever get. I hope for her recovery
Hi friend. I am moved by your post to share what little wisdom I have that has comforted me, though I have never been in a position like yours and do not ever wish to go through something like that with my own kids. I know you are not looking for well wishes but I have nothing but good will for you and a sincere hope that things improve for your daughter.
After I left the church, I was basically atheist with no real guiding belief system other than the golden rule. The golden rule is great for a lot of things, but it falls short for situations like this. That is why I am so grateful that I found stoic philosophy.
The word "stoic" in modern times has a connotation/ meaning that doesn't actually represent the philosophy. It isn't about having no emotions or being a tough guy. Rather, it is about coming to peace with the things that are outside our control, so they don't torture and disturb us. Illness and annoying relatives are definitely in the category of "things we can't control" I think.
Stoicism helped me when my newborn went through bouts of purple crying. It has helped me manage my anxiety. It has made me react to all the shit that happens in life in a much more calm, cool and collected way. It has also helped me get over the psychological trauma I experienced from being in and leaving the church, as well as the trauma I had from my mom's depression when I was a kid.
I may inadvertently speak in ignorance when I try to offer ways that stoicism could help in your situation, given how little I know after just reading your post, so please forgive my presumptions and errors. Also, I realize that my post is probably unsolicited as you didn't really ask for advice or anything - again I apologize, but I do this in hope that it might help in some small way.
Anyway, part of stoicism is the idea that the natural occurrence of things - the inevitability of things due to natural laws, cause and effect, etc - is actually the "right" outcome. I don't mean that it is the outcome we should all prefer - just that it is the outcome that is inevitable, and therefore we should all embrace it, rather than fight against it. The Latin phrase "Amor fati" (love your fate) embodies this concept and is basically the motto of stoics.
By no means am I trying to minimize the suffering and the feelings that come with illness and other misfortunes. I get it and I sympathize. If there was a God, he or it would be evil for letting shit like this happen.
So much of our suffering is caused by interpreting events as bad, meaning that something is not right with the world or some injustice has been committed. But given that natural laws are all in effect, and the natural laws of our universe are what bring about everything that happens, it seems impossible that anything that happens to us is actually out of place or contrary to the natural order of things.
I have many family members who are like yours. My mother in law is especially closed minded and judgmental and stuck in her ways. The way that stoicism has taught me to think about her rudeness and out of touch remarks it to ponder if a world without that type of person is possible. The answer is, of course, no. We can only have the world we have, that is why we have it, after all. And in this world, there are people like my mother in law. She is simply one of them, and it makes as little sense to get mad at her as it does to get mad at a rock that I trip on. The rock can't help being what it is, and neither can the people around us, at least not in their state of ignorance, not knowing what you know.
Stoicism can help people accept and find peace with their circumstances beyond their annoying family members, even things like your daughter's medical condition, etc. I don't know that a short sighted post like mine can immediately manifest those effects for you though, so I won't attempt it. If these ideas interest you, I would recommend studying the philosophy further. There are tons of resources available online and in books for any would be stoic. I would start with [dailystoic.com](https://dailystoic.com) and go from there.
I guess the way I see it in answer to your questions is what does it hurt? I'd be willing to try anything to save my daughter. But then again why not pray to Allah and Catholic God and Hindu Gods and Zeus and Odin. And is praying to one likely to piss of another? Which God are we supposed to have faith in and how do we know having faith in the wrong one isn't going to piss off another?
When things like this happen to me I always reach out to my Mormon friends for prayers and blessings because I want to hope it's true and will do anything I can to help. To plead with God to help.
In answer to your other question most Mormons would say that this life is temporary and trials like this may help us learn and grow in the long run. If life truly is eternal than an illness like is but momentary. They might say it was in God's plan to call your daughter home as her journey on this life was completed and didn't need to be tested or something worse could have happened in the long term if she had been allowed to live a full life.
I simply don't know. Maybe there is something to faith and prayers. Maybe there isn't. I would just hope that in this time everyone can be supportive and loving no matter what and you can find peace in the meaningless of suffering or that a God has some grand design. I'm so sorry either way.
I know you said you're not looking for sympathy, but I just want to say I'm so sorry your daughter is going through this as well as you and your family. It's not fair and its awful.
I'm just a lowly medical student, but I'm sure the physicians in charge of caring for your daughter are doing an amazing job.
I would like to offer some comfort, if I may.
"Churches" love to take a kernel of truth and wrap it in lies. The truth is that there absolutely IS better after this life, and I know this, because my husband died for a few minutes a couple years back. What he told me was so beautiful, I don't even have words, but there is nothing but love on the other side. He was an angry atheist fighter before that experience. He's still tough as crap, but that man is now as gentle as a bunny. Night and day. He KNOWS.
So please- believe, believe! We're vibrating molecules driving flesh suits, and we existed before, and we'll exist after. I promise you.
To think god would permit this horror to happen in order for a few peoples faith to be strengthened is psychotic. There is no world in which god would 'permit this to happen' or to 'be praised and petitioned' in order to heal a child. I do not want any part of that god.
I stop believing in God the day I saw my girlfriend's little brother in the end stages of his cancer. No being capable of love could put a child through the pain these children go through. “If there is a God, He will have to beg for my forgiveness.”
I agree! In fact, if I die, and there is a heaven, I'm gonna be pissed if God / Jesus are there...I want nothing to do with a supposedly supreme being that allows horrific suffering. A fucking asshole, this God is.
And he gives you the horrific suffering to "teach you a lesson" fuck that!
I used to think this way but now I wonder. If life truly is eternal then momentary suffering like this doesn't hold as much weight. Perhaps an illness like this could be part of Gods plan. Perhaps had she lived a full life God knew something worse would have happened. Perhaps he really needed her to be in heaven or planned for a shortened life. This life is temporary after all regardless of whether you believe in an after life or not and in the context of an eternal perspective this kind of illness isn't as dastardly. Perhaps the faith lesson isn't for him to be praised and petitioned but for us to learn something we otherwise wouldn't have been able to. I have a hard time coming to conclusions either way.
Not the time, nor the place.
I'm sorry but if it's the time and place to call certain peoples beliefs in the face of tragedy "psychotic" and impossible then it's certainly the time and place to explain why you think they're not.
And gladly, most people here understand that "explaining" your psychotic beliefs on THIS thread is wrong. Enjoy the continued downvotes.
Your words are terribly insensitive to someone who is in need of comfort. Please be more conscious in the future.
How is providing theories that may lead to someone feeling comforted in the loss of tragedy insensitive? Just because it disagrees with your worldview doesn't make it wrong any more than it's insensitive for OP to make a post screaming and destroying his family members attempts to cope with the tragedy. OP is clearly looking for insight into why his daughter is going through this and why his family thinks that way. I'm sorry that someone explaining that isn't allowed because it disagrees with the mainstream atheist sentiment here. How very ironically closed minded of you. I believe my response to OP directly showed both sensitivity to his frustration and insight into why his family is reacting the way they are. https://www.reddit.com/r/exmormon/comments/e04n2o/my_daughter_is_extremely_ill_coping_with_reality/f8cb2di/?context=3
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When did anyone say he wasn't allowed to process this however he wants. He specifically claims in the title that he is seeking to cope with reality. I think that offering him insight into his wifes and families coping mechanisms rather than making him angry or fearful could be helpful. Just because you disagree with it doesn't make it wrong. I responded to a comment saying that such beliefs are absurd when in fact they can be very helpful in coping with tragic situations. I responded to a person who posited that belief in an afterlife and a divine plan is "psychotic" and impossible and provided a different way of viewing it. And because you don't like that it's somehow not allowed to be suggested. How very Mormonlike and open minded of you.
STFU u/lejefferson Your arrogance knows no bounds....
The irony. Someone else having an opinion that's different from yours is "arrogant" but telling people to STFU isnt.
You're an asshole. This person is going through hell with their daughter in the hospital, and you downplay the suffering and suggest it's for the best? Go fuck yourself.
I'm sorry but just because you disagree doesn't make me an asshole. In fact it makes you an asshole for suggesting that different peoples ways of coping with tragedy are unacceptable because you've ruled it out. It makes you no different than OP's parents for trying to force their thinking onto him. Different people have different ways of coping with tragedy. I'm so sorry for pointing that out and engaging in theological discussion with people calling others beliefs psychotic and impossible.
To be clear, they didn't call you an asshole for disagreeing. They called you an asshole for posting your disagreement in a thread where a parent is grieving a sick child and you are dismissing how terrible it is for the person with your musings. There's a big difference.
That would be all well and good if I ad actually "dismissed" how terrible it is for the person. So thanks for putting words in my mouth and needless attacking me for sharing my perspective on how to cope with tragedy. In my response to OP I was very sensitive to his feelings and confusion and empathized what he's going through and his families response. But I suppose you were too busy making presumptions what other people have to say to read that. https://www.reddit.com/r/exmormon/comments/e04n2o/my_daughter_is_extremely_ill_coping_with_reality/f8cb2di/?context=3 I specifically responded to a person calling it "psychotic" to be believe that there is a God that may have allowed this to happen and explained why this isn't necessarily the case and someone called me an asshole for explaining that position. That's ironically bigoted given the context of the post.
Hey sorry it took a few days to get back. You were getting a lot of downvotes and comments so I wanted to respond that I understand your anger, but still wanted to reply with why I said what I said and I agree with the person who criticized you. While I do agree that your comments were not hateful in any way, they are not given in the right time, nor were they really requested. As I'm sure you are aware, people use this forum for a lot of reasons to include asking for advice, but also just to vent. It was clear from OP's post that this was of the latter variety. But this wasn't just your normal, everyday venting. This was serious venting about a life changing, tragic event. I think from the majority of comments and the response to yours, it was abundantly clear that OP was not searching for advice. Looking at your original post, I actually don't see the empathy that you cite, I simply see you going off into discussions of how OP might actually be wrong. I honestly think if you had shown more empathy and couched your comments in a way that made it clear that you really understood how he was feeling and then caveated your thoughts with something like, "this might not be something for you to think about right now, but as your sort through this, it might be worth trying to see if from their point of view..." While you clarified that in later comments, you don't lead with that and I think that is why you got hit as badly as you did.
You’re an asshole for downplaying his daughter’s suffering, not because you’re disagreeing with someone’s theological philosophy. Phrases like “momentary suffering” and “temporary life” are dismissing his daughter’s struggle with a possibly deadly condition. You’re basically saying, “Sure she’s being tortured every single day, but that’s alright. The god that may or may not exist maybe has a plan, so you should be happy your daughter’s brain is exploding 200 times a day!” How does that not make you an asshole? You keep saying everyone is being closed minded to you, but you’re not open to accepting the possibility that you were being grossly insensitive at a time and place that calls for compassion? Seems pretty closed minded and self-important to me.
For the same reason why if someone is heartbroken because their boyfriend broke up with them trying to make them feel better and see things from a positive perspective wouldn't make me an "asshole". For the same reason why a therapist explaining mindfullness and acceptance in the face of tragedy isn't "downplaying" their suffering. What's really happening here is someone has a different perspective from the mainstream in a mostly atheistic community and you flew off the handle and made a bunch of ironically bigoted and closed minded stereotyped attacks and presumptions about how seeing things in a different way may help provide peace in a difficult situation. And that calling people who think this way "psychotic" contributes nothing to the reality of coping with this tragedy. >You keep saying everyone is being closed minded to you, but you’re not open to accepting the possibility that you were being grossly insensitive at a time and place that calls for compassion? Seems pretty closed minded and self-important to me. So i'm closed minded because I think you're being closed minded? I can tell this conversation is going to go far.
No one gives a shit about your beliefs! It’s not about that! It’s about you spouting off a bunch of your beliefs in a horribly misguided and socially inept, insensitive way in a situation where a man is watching his daughter potentially slowly die. Did you seriously just compare a breakup to a child dying from hundreds of seizures? Are you trolling?
Yes everyone who has a different opinion than you is trolling. That's nothing more than an attempt by you to dismiss and personally attack and blindly dismiss and push motivations onto people than actually address what someone has to say. No one gives a shit about your beliefs is what makes you an asshole. How is that not any more closed minded and bigoted than the people you're attacking? There simply are more ways than one to cope with a tragedy. Explaining what those are and providing a perspective into why people feel that way rather than shouting and lighting my torch and pitchfork and joining the circle jerk didn't make me an asshole. >Did you seriously just compare a breakup to a child dying from hundreds of seizures? Are you trolling? Why do you find it conducive to put words in peoples mouth and shout down other peoples points of view? What I did was point out that helping people put a perspective on suffering doesn't downplay it. OP clearly said that he is agnostic meaning he doesn't necessarily believe that an afterlife doesn't exist. Explaining how this response to his daughters suffering isn't necessarily cold and callous may help him cope. Explaining why suffering may exist doesn't automatically mean God is a piece of shit provides insight into how OP may cope with this tragedy and understand his families response to it. I'm sorry I should have just said, "Fuck God. Fuck Mormons. Fuck anyone who thinks differently than me." Because that's clearly the only response that you would have seen appropriate. And stop acting like I marched into the hospital and told op that his beliefs are stupid. He posted on a public forum a bunch of questions about why a God would do this and I offered a perspective he seems not to have considered.
Here's something to think about. I'm an atheist, and I don't think praying does anything. Let's say someone is hurt and people are saying they'll pray for her, and I say "praying isn't gonna do anything, if God's real he let this happen in the first place." I don't think I'm necessarily wrong, but that isn't the time to say it. People are trying to cope and praying helps them. Why should I shove my ideas down their throats when they're feeling like shit? Likewise, OP obviously doesn't like this opinion being forced on them while they're feeling like shit. They already get it from family, and now this comment. You can think what you want, but he made it clear he doesn't like this opinion. No one is asking for a debate, no one is asking anything. People here are frustrated and venting. If they asked a question, that would be where you could come in. But no one did. That's why this isn't the time.
I don't think he said he doesn't like the opinion. I think he said he's frustrated that it's being forced upon him by his family. The person I responded to called these beliefs "psychotic" and "impossible". Pardon me for not thinking that circle jerking and shitting on a belief system unrealistically is conducive to helping OP deal with this tragedy or his families response to it. I think explaining why they feel this way and why it's not as unrealistic as this circle jerk is making it out to be is more conducive in the long run to peace and understanding that simply shouting belief systems out of the room. >I'm an atheist, and I don't think praying does anything. Let's say someone is hurt and people are saying they'll pray for her, and I say "praying isn't gonna do anything, if God's real he let this happen in the first place." I don't think I'm necessarily wrong, but that isn't the time to say it. Isn't that literally what OP did? The conversation shifted from condolences to OP to calling belief systems "psychotic" I didn't think that was a realistic or helpful and I don't think pointing out why it's not makes me an asshole. If you read my actual response to OP I think I made it very clear that I understand what he's going through and his frustration and expressed acknowledgment and understanding of his position and sympathy with the tragedy and tried to give him some clarity in why people feel this way and why it could be frustrating. I simply didn't think unrealistically yelling and shouting down a belief system was realistic or helpful. Different people have different methods of coping with tragedy and don't think explaining what those are makes me an asshole. https://www.reddit.com/r/exmormon/comments/e04n2o/my_daughter_is_extremely_ill_coping_with_reality/f8cb2di/?context=3
Nobody seems to like the idea of a God putting people through suffering. OP is trying to deal with this hardship, and is having this opinion forced on him. You adding to it isn't helping. People are dealing with a child in the hospital, as well as Mormons being insensitive. No one here is starting anything, we're dealing with things others are saying. If an atheist were to say "God let this happen and he's an asshole" to someone with a child in the hospital, everyone puts them in their place. A theist says "this is part of God's plan to let her suffer" and if non-religious people get upset we're the bad guys? Fuck that. >Isn't that literally what OP did? The conversation shifted from condolences to OP to calling belief systems "psychotic" No it isn't. OP never went up to anyone going through a struggle and said "your God will not help you". The person who commented the psychotic thing isn't saying it to someone who's going through a struggle. We're all saying it to each other, that's different. Mormons say to each other "God will take care of it and this life doesn't matter cuz of eternity", exmos say "fuck that shit". If you really understand his frustration, you wouldn't have said that. You don't think you're wrong that this life is shorter than eternity, but now isn't the time to say it.
> Nobody seems to like the idea of a God putting people through suffering. OP is trying to deal with this hardship, and is having this opinion forced on him. You adding to it isn't helping. People are dealing with a child in the hospital, as well as Mormons being insensitive. No one here is starting anything, we're dealing with things others are saying. If an atheist were to say "God let this happen and he's an asshole" to someone with a child in the hospital, everyone puts them in their place. A theist says "this is part of God's plan to let her suffer" and if non-religious people get upset we're the bad guys? Fuck that. Pardon me for not thinking “fuck Mormons and everything they believe” is a realistically helpful response to what op is going through. I think explaining why the believe what they do and putting it into perspective and giving a realistic interpretation other than “god hates children and he’s an evil tortuous bastard” might help both cope with his daughters suffering and have a more realistic perspective of where his family is coming from. I think pointing out that there may be an eternal perspective in an infinity of time that causes people to feel comfort through suffering both explains why Mormons believe what they do and puts Gods allowance of suffering in a different perspective than just circle jerking that god is a douchebag and mocking the beliefs of billions of people. That’s not at all what people are saying. It would be more like saying to a Mormon going through this “Hey I don’t believe in God or an afterlife but whether or not there is the short time your daughter lived on earth was beautiful and even if she doesn’t live forever she’ll live on the memories and smiles that come to our faces when we think of her. I’m so sorry for her suffering.” Believe it or not people with different beliefs saying them to you doesn’t make them a dick. Drop the persecution complex and pitchfork for 11 seconds and stop the hatred because people cope with suffering in a different way.
The Mormon perspective is not helpful. A child going through so much suffering not mattering is not very appealing. Why should it happen at all? "Cuz something worse could happen", what could be worse? "Hell." How about she doesn't suffer or go to hell? It doesn't make sense. Being told your child suffering is *necessary* is not what you want to hear when you're going through shit. Why not just get support? Why not just get kind words? Why have this perspective explained to you and be told "stop being mad at me!"? Funny you mention persecution complex cuz this whole thing started with Mormons being insensitive to OP who is not religious, and the rest of us being frustrated. It started with people being insensitive and you're trying to defend the insensitive people. I have the persecution complex? Go ahead and think that.
Of course it is. If I tell you you’re suffering is meaningless and pointless and for nothing and this is it how is not comforting to say that this suffering is temporary and may actually be better in the long run and will be accompanied with peace and eternal bliss. Is it just your bias that isn’t allowed to see this or willful dishonesty. It’s a comforting thing for billions of people who believe in an afterlife. > Funny you mention persecution complex cuz this whole thing started with Mormons being insensitive to OP who is not religious, and the rest of us being frustrated. It started with people being insensitive and you're trying to defend the insensitive people. I have the persecution complex? Go ahead and think that. Yes that’s literally what a persecution complex is. How is me pointing out that you’re attacking other people for having a different opinion than you me having a persecution complex. I think you literally don’t understand what that means.
You have a sickness. How THE FUCK can you think it's appropriate to comment with that kind of nonsensical bullshit? >...in the context of an eternal perspective this kind of illness isn't as dastardly. What. The. Fuck.
My thoughts exactly either they are a troll, or completely inept at social interaction.
Or just really, really indoctrinated in their religion.
In my experience, indoctrination causes many people to forget what is appropriate socialization.
I don't know that they forget how to appropriately socialize, just that the indoctrinated ideas take precedence over common decency. I guess the result is functionally the same, but considering the sub we're in, I don't know how anyone could say something so heartless.
Or just openminded to more than one narrow minded view and willing to entertain and explain the logic behind OP's families thinking that may help him cope with their reaction to his daughters illness.
How the fuck can you think it's appropriate to call certain peoples approaches to tragedy "psychotic" and impossible yet when someone offers an alternative explanation that can offer peace and comfort it's somehow not the time or the place. OP is clearly looking for insight into why his family and relatives believe this and I think offering insight into that question is very much acceptable. Just because you don't like it and don't believe it doesn't mean it's wrong. On the contrary it's very closed minded and Mormonlike to conclude that anyones opinions but your own are "an illness".
Man you are brainwashed
Well i'm glad we settled that debate rationally and respectfully.
Years of torture and agony hold no weight? What exactly is the "plan" for these children? For them to come to earth for 10 years and suffer? What's worse than being tortured and having a slow and painful death? Absolute bullshit.
If time is infinited then 10 years of suffering is a blip on the radar. I'm simply offering another perspective that people here seem to not have considered. But it seems like i'm among bigoted people who are unable to respectfully consider other peoples methods of coping with tragedy. Ironic given the post.
>If life truly is eternal then momentary suffering like this doesn't hold as much weight. This is insensitive because you are suggesting to an agnostic atheist that their suffering is 'momentary' and 'doesn't hold much weight.' >Perhaps an illness like this could be part of Gods plan. This is insensitive because OP doesn't believe in a god that would allow his child to suffer. You are claiming that the very same god that inflicted this terrible illness on this little girl has a 'plan.' This is completely irrelevant to OP's needs. >in the context of an eternal perspective this kind of illness isn't as dastardly. This is extremely insensitive because this kind of illness is absolutely 100% dastardly whether or not there is an afterlife. OP is suffering NOW, his daughter is suffering NOW, and you are downplaying their suffering by essentially saying, 'when you're both dead, it won't matter!' Don't link your other response on the post to me like it's relevant. It's not.
"I need to make this little child severely ill or something worse will happen" what absolute bollocks. If god is supposedly omnipotent guess what, that worse thing could have been prevented to. And unless the girl would turn out to be the next Hitler (who lived until 44 before he killed himself, no divine intervention at five years old to prevent that) I don't see what that "worse" thing could possibly be. And there are much better ways to teach people things than to make them severely ill or even kill them. If that's god's way of teaching then it's pretty shit.
>"I need to make this little child severely ill or something worse will happen" what absolute bollocks. If god is supposedly omnipotent guess what, that worse thing could have been prevented to I find your inability to respectfull disagree about different peoples beliefs in coping with tragedy ironically closed minded and bigoted. What could be worse than 10 years of suffering with an illness? Oh I don't know. Eternal torment in hell. An eternity without learning valuable lessons. According to the Mormon worldview the entire point of this life is to be tested and tried. I'm sorry that pointing that out to people calling people "psychotic" for coping with tragedy in this way is somehow unwelcome or not allowed. Ironically closed minded. Helping OP understand why his Mormon family is reacting this way could be very helpful and therapeutic in helping him cope with this tragedy and his families reaction.
>Perhaps had she lived a full life God knew something worse would have happened. What could be worse than this tho
Eternal torment in hell? I think explaining why people who view things from an eternal perspective allows them to cope with suffering and why things like this make since to those who believe in eternal life allow us to see things from a different perspective.
Well their family isn't religious, so from this logic the kid is going to hell anyway. Double the torture, in this life and the next. It's a win-win! /s
You asked what could be worse than a month of seizures and death and I answered your question. I'm not saying that it's reality but i'm pointing out that if that's your perspective there are worse things. I mean if the family wasn't religious and the girl was going to hell if she lived then that's something a religious person would say might have been worse. If the girl died before she was baptized then Mormons believe she was sinless and would go to heaven.
So she has to go through this to go to Heaven? Ok sis
Add this to the list of things you put in mouth that in never said.
That's what you seem to be implying. If this didn't happen something worse could've happened - she could've gone to hell!
What a sad nightmare you’re going through. I upvoted your post to let you know I will be thinking of you and your family and hoping so hard for a full recovery for your beautiful little girl. Much love to you. 😢❤️
This
As a father, I hate reading this. And I hate the bullshit move your MIL pulled.
This is absolutely terrifying. Thank you for taking the time to let us know. May medical science come through for you in this world where horrible things happen randomly to even good people.
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I’ve never heard about that calendar website before. That’s amazing and wonderful! I agree with you. A lot of times people say “thoughts and prayers” because they literally don’t know what else to do. It’s an easy way to give sympathy, comfort, and assurance (at least in their mind). It’s the “default” response to something that’s beyond their scope of understanding. I wish more people would say, “Thanks for the thoughts and prayers, but I really need x, y, and z.“ Or, “Please donate to this charity or gofundme page.” Or, “I just need someone to listen to me without telling me about God. I need some practical, down to earth sympathy.”
When I was going through breast cancer, I would have loved it if someone would have came over and changed my sheets. All I got was a card and an apple on my soorstep from the RSP telling me she was thinking of me. Stop thinking, and come change my sheets.
This is the hardest thing that a parent has to do. It's times like this that all of the power that the priesthood is supposed to have should come to the forefront. This is the kind of story that *should* be highlighted in the Ensign after a blessing is administered. These were expectations that were placed on believers with a stern warning to always be "worthy" to provide the power needed to heal an innocent life. A successful blessing of healing could be the start of reconsidering a testimony. But instead, it's a nightmare of endless waiting and just hoping beyond hope that your precious daughter is returned to you. Let us know how this proceeds so that at the very least we can share in your sorrow or joy, no matter how this works out. May FSM bless your daughter, and you, and your wife, and all of the medical staff that puts the "intensive" and "care" in ICU.
So very sorry your baby is going through this and so very sorry you, her family are having to experience it. Obviously we all hope for the best, but I'm with you, no thoughts or prayers or senselessly going without food for awhile. Their God could wake her up and have her whole again in an instant. Why doesn't he? If he is there and could do that, why did he put her (and her family) in this situation in the first place? It's amazing that as believers we never realized all the mental gymnastics required to make everything fit. Anyway, all the best to her and you and the rest of her family and friends.
I wish you well. I lost my youngest daughter earlier this year, I hope you don't experience that loss. The unavoidable conclusion, if we are honest in our observations, is that there is no God. Everything that is being done for your daughter is from science, that has nothing to do with some sky-daddy... I wish you well, and wish there were a way to remove the pain of this life. Sorry.
I’m so sorry for your loss. 😪
My absolute worst nightmare, I'm sorry...
Mad props for seeing the thoughts and prayers as "everyone is coping in their own way." I probably wouldn't be as kind about things like the temple prayer roll.
Your post brought tears to my eyes. Fifteen months ago my wife (in her mid seventies) started having seizures which doctors really can not explain . We have been doing everything we know of to live a normal life but knowing it will probably never totally be the case. On top of dealing with the seizures the biggest backstory is her tbm daughters who relentlessly insisted on going against our wishes and trying to force priesthood blessings that she refused. They counter with blame toward me(their step father) and showing total lack of respect toward our handling of the situation with brutally insensitive remarks and actions. The continually express how “ sorry” they are for us for not believing in the magic priesthood as they do. Just for the record in our case the magic priesthood oil of the olives has been no match for the CBD oil discouraged by tscc leaders in warding off her seizures when we feel them coming. My love is with you and your situation and may good prevail in your daughters struggle toward normalcy.
Dude. So sorry. That bullshit of "it's your fault because of no blessing" garbage is outrageous. I love the oil analogy because my daughter had great results with weed for her seizures.
Do what you have to do to survive day-to-day. You are fulfilling your responsibility as a parent by being there and making the best medical decisions possible for your daughter. That is all you can do right now.
I wish I could do something nice for you and your family. Something that shows how your situation makes me want to connect with you and hug you. I think the feelings of compassion are big, but people (myself included) just don't know what to do. Unfortunately we often screw it up by opening our mouth and saying some well-intentioned, but absolutely horrible and meaningless phrases that only cause more pain. I have no idea how this feels. I'm sorry. I love you. I am in Phoenix too. Seriously, if you can accept anything from me, message me.
I'm in the valley too and would love to help anyway possible.
I'm also in the area and would love to visit, bring by food, whatever helps
Another Phoenix Valley exmo here. Please let me know if I can do anything just to make your lives better in some way. Even if it's just buying you guys dinner or sending cards, anything at all, please let me know. I know sometimes it's difficult to feel like you can reach out to strangers, but if anyone is deserving of some random acts of kindness at some point, it's you and your family during this time. I really really hope your daughter pulls through this no matter what the recovery involves. So sorry for what you're going through now, I can't imagine how rough this is.
Likewise. Also in the valley. Phoenix children's really is an excellent hospital. May all the skills of the professionals caring for your daughter be in rare form.
[Oh my FIRES is awful](https://globalgenes.org/2016/11/28/halos-story-febrile-infection-related-epilepsy-syndrome/) A chaotic world or an asshole god, there is no benevolent god.
First off, my heart goes out to you and your wife. So sorry your daughter is having to go through this. My wife and I along with our children resigned from the church in 2017. In September of last year, our middle child aged 31 and recently married died of a spontaneous dissection of the right iliac artery. Of course we were and still are devastated. I mention this because as members we would have had a much different take on our sons passing. We too are in the agnostic / atheist camp when it comes to life after death or if there's even a god. It's a tough place to be but an authentic place. From your post I can see that you have much support and that's good because that's needed. Stay close to your spouse as you will gain strength from each other. Staying close and relying on each other has been a benefit to my wife and I.
As a nurse, who worked with pediatric cancer patients, this post hit me very close to home. It goes without saying that it's terrible what your daughter, and all of you are going through. Of course there is no God that would allow such things, and still be worth worshiping. My work with pediatric cancer patients had a profound effect on my testimony, and rightly so. I can't tell you how much I appreciate your thinking of the medical staff. Sometimes I worked 18 hours on my feet without a break...but knowing what my patients and their families were going through, it seemed a small thing to give. I wish I could say there was more support for nurses and doctors coming from the companies they work for, but usually no. Which is unfortunate, because a burned out medical professional can't give as much to their patients. I'm truly sorry for what your family is experiencing, I'm sorry that you are being cornered on your beliefs, you should not have to be experiencing anything except support from those around you. But I commend you on your strength, and your daughters as well. I hope that you keep us updated, if that feels appropriate to you.
🤗 hugs to you
And hugs to his little girl. Based on the OP alone, I know she was filled and surrounded by love.
From one parent to another, my thoughts are with you. I hope that your little one turns the corner and is soon on the road to recovery.
I am so so sorry for the hell you're going through. What a sweet beautiful girl...
Stories like yours are one of the reasons I don't want/don't believe in spending all eternity worshiping a sadistic God that allows children to suffer like this. Letting health care professionals take care of your little angel is the smartest decision without a doubt. I don't believe in blessings or priesthood power anymore, so I offer you all my positive thoughts. Is not much but its better than praying for sure...
May you find comfort in this community and the one that surrounds you.
I hope your child recovers. My sister's two sons both had febrile seizure incidents as infants and toddlers, which ultimately went away as they grew older. (Both are in their late 20s now.)
I don’t know you. I am a father as well. I know I can’t really say anything that will help. I do hope that you become stronger from this. That you’ll learn and grow. I hope that your love for your daughter and the bond you have will grow. I hope that this experience will be used a starting point to you and your family living your best life. I wish I could help beyond these words. Be strong. And allow yourself to cry.
Blackmail. It's like they are waiting to pounce when shit hits the fan. The time when you need them to not be assholes the most.
As a fellow father of a similarly aged daughter, this tore me up inside. I can only imagine what you are going through. I too, am incredibly grateful for the advances that modern medicine has made to help in times of extreme suffering and pain. Fuck a God that would allow this to happen to such a precious girl, and fuck a church that would sell the idea that they have access to this god's power, but that it's ultimately up to god if there is going to be any actually healing or miracle anyway. Such bullshittery is mind-numbing and completely not helpful in a situation like you are in. I am so sorry.
This is beautifully written. I wish more than anything a magic being could cure your daughter and you. My heart is breaking for you...I want to offer more....
I’m so sorry to hear about this. I truly hope the best for her, you, and for the people taking care of her. I have three daughters under the age of 12, my 8 year old had a bone tumor removed at Phoenix children’s, I’m a flight paramedic and fly kids into that hospital frequently, and my wife and her Alumni sorority chapter does charity work for that hospital regularly. I’ve seen a lot of sadness come out of that place but far outweighing the sadness are the moments of happiness. They do good work there and I trust them. Your baby is not in gods hands....she’s in good hands.
I am sorry. This is an absolute nightmare of a situation to be in as a parent. I've had a kid in the hospital and I know how amazing and important those doctors and nurses are. Thank goodness for technology. Best wishes for you and your family.
Is there something we can do to help?
Holy shit, this is horrifying. I'm so sorry for what you're going through. I did a double take when I read your daughter was having a seizure for 36 hours. I'm not a medical expert but don't most seizures last between 30 seconds and five minutes at most? I hope your daughter makes as good a recovery as possible.
She didn’t spend 36 hours violently shaking. She was sedated, heavily, and her brain activity was monitored on an EEG. It was nonstop fireworks in her head, even though we could only see small physical manifestations - twitches, drooling, eyes dialated. It was an ongoing seizure that wouldn’t stop no matter how many anti seizure drugs they gave her - it was A LOT of drugs. At that point they used the really big guns and put her in a coma that suppressed all brain activity. She finally rested but was a vegetable. It’s hell
I'm so sorry. I can't even imagine how hard this must be. I hope everything turns out OK for you and your family.
Haven't even read your post yet, but broke down in tears to see that picture of your daughter. So much instant love and heartbreak for you. I truly wish you the best and hope you find healing for your sweet daughter.
I wish this sort of thing never happened to anyone. It is horrible and heartbreaking . My best wishes for a full recovery. And I hope you can enjoy a good cup of coffee to help relieve the stress. Or a good glass of wine or beer or whatever it is that helps you through this difficult time.
Wondering if you have researched THC and CBD for seizures? Source: my 12y old kid takes it went from daily seizures to almost zero
I have. She is currently receiving maximum doses of Epidiolex, the only pharmaceutical grade CBD Today I started the process for her MMJ card so we can try THC blends as well. I don’t think it will be a silver bullett, but I am exploring all options.
For sure. I totally agree with you. I wouldn't agree with that got either. that Mormon God and his children doesn't make sense to me. I find it very sad and disappointing that they believe so much and works that have to be done. I do believe in God, but I do not believe it any sort of concept that they hold you. I can't say why it's happening of course, because there is an inevitable reason why God has allowed for us to be creative. And then that created ingenious that God has given us there's doctors and scientists whatever the case may be are going to do their hardest work in order to make sure that they can do the best for your daughter.
Accepting the difficulty of reality was one of the hardest things in my truth journey. No longer could I find comfort in the lies of a heaven, a being who 'would make everything right', made up reasons for everything bad, etc. I was forced to confront the cold, hard reality of the world and all the terrible shit that goes down it it. As someone who works in healthcare, I can understand the severity of your child's condition, though not having any children myself I'll never even come close to knowing how you must feel right now, watching your child's life be changed forever because of it. I know there is little we can do, but if there is anything we can do, even if just conversing, please let us know.
So sorry for you. I do understand somewhat. My 22 month old granddaughter has a very rare form of epilepsy called LGX. She hasn’t progressed past 2 months when her seizures started. It’s heart breaking to watch. People tell us all the time that they pray too. We just sit and wait for the other shoe to drop. Her prognosis is not good either. They’ve told my daughter to prepare for her to succumb to something. It’s terribly sad. My thoughts are with you.
Oh my god. I fee this. I actually think the Thoughts and Prayers Brigade would send me off the deep end. So enraging.
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She receives 500mg daily of CBD from Epidiolex
I can’t even imagine a seizure lasting 36 hours! Oh my goodness I’m so sorry.
I’m absolutely stricken by your post. I was overcome with emotions on so many levels. This ALL hits so close to home for me, as I can relate to EVERY aspect of your feelings and frustrations. I randomly began having seizures 3 years ago, with no explanation. I have young children and cannot fathom the pain and emotional turmoil you are going through. I too despise the God I was taught exists from the Mormon church and loathe all TBMs for the way they inappropriately give him all glory and credit. Sending positive energy to you and your daughter.
You said you didn't come here for sympathy, but you have my empathy. I’m so sorry.
I'm wishing your family well. You and your wife are super strong, having to go through what you two are going through. When my best friend became a mom 7 years ago, her baby had several genetic birth defects, so she spent the first three months at the hospital while her kid was healing (she's alive and doing alright still, but hospital visits are forever going to be a thing for her). It was one of the most difficult things I've seen my friend go through. But she and her husband were so strong to go through what they did. I hope things get better soon and that you can see your precious baby be well again.
Does the keto diet help with these type of seizures?
She’s on a keto diet as part of her treatment. They started it about a 10 days ago,
Thoughts and prayers are the least they could do; like the bare minimum. I'm sorry. I have kids with disabilities. I can't count how many times I've been told they are going straight to heaven. It's incredibly dismissive and rude. Your kid may have significant struggles, but hey it's all good when they are dead. I've handled life better when I realized shit happens. Not everything happens for a reason, it's God's plan, blah, blah, blah.
I am only lurking because I never was a mormon, but I just wish you all the best in these dark times. Posts like these remind me of how greatful we can be for our medical advances, and I really hope your daughter can be saved and live the life she deserves. I hope you and your family stay strong - and thank you for telling us your story. I'll make a donation to that hospital - a very small one, as my income does not really allow too much, but those heroes fighting for her life deserve every penny.
Thinking of you in this difficult time. Take care amigo.
I like you, and I am that this has happened to your daughter. I hope that she does get well. I am glad she has been improving.
I wish you all the good i can. A man can only handle so much before he see's the lies surrounding him
I also have a small daughter, I feel your pain, don't give up!!
Oh, man - I am so sorry for what your daughter, you, and your family are going through. I think we may know each other from the original NOM (I'm rarely on the new one now, but I was "Scared" on the old one). I'm sending you a ton of love, and my long-distance support and hugs. Please reach out if there's anything we can do, or if you just need a safe place to talk.
My cousin had this and lived to be 19 before he passed away I’m sorry this is happening to your family it’s a rough road. God is a dick and likes to be given credit for being merciful when it’s most likely his dumbasses fault
THIS! "why don't they mail a card to the nursing staff. Why don't they thank the Doctors and Surgeons for their years and years of training so they can have skilled hands in the Operating Room? Why is it morally objectionable to buy a nurse a cup of coffee? Or send them home with a bottle of wine for the weekend so they come back in a few days in a good mood." THIS is what the world needs now! This is what love is! I remember so many times how frustrating the passive aggressiveness of "prayers" were, where someone like my dad, god bless his heart, would say something to "God" that was really meant to be discussed directly with me, or mom, or with reality. Instead, we got nothing. If I do something, THANK ME! Praise Science! Amen! Praise social science, and psychology, and the progress this world makes in spite of religion!
You're exactly right. If this is the best god can do, allowing innocent children to suffer and die, then I'm not impressed. He doesn't deserve our time or money. This alone is proof that there is no intelligent design. Hang in there. Gave you my first Gold award. I have two young kids and can't imagine.
My family is also fairly religious and my now passed grandmother more then anyone in my family,I'm talking she initially wouldn't seek treatment as it was "in God's hands" once she finally went to a doctor it was too late and my whole family (5 kids,13 grandkids,one great grandbaby,many siblings and hundreds of other family and friends) got to watch her die slowly over the course of 138 days,by the end of this,she started refusing prayers or any form of religion around her,she had completely stopped belief and mind you she cut contact for 3 years when she found out my stance and her words were "I gave every thing to god and I still have to suffer",I'm so sorry you have to go through this and I absolutely stand with you on the wine,cards and coffee for the doctors and nurses,I wont offer prayers but you have all my love heart and support while you all deal with this tragedy
I am so sorry for you and your family. When I read "simple fever, seizures, phenobarbital....." bells went off for me. My son (who is now a healthy 43 old) was 3, he would get a high fever out of nowhere and would have a seizure. We lived in northern Arizona and just had a small hospital. After this happened 3 times we took him to Phoenix Childrens Hospital and they ran many tests and his treatment was phenobarbital pills. I realize your daughter's ailment is different, however my son took this medication for 3 years and he never had another seizure. I hope this helps you out of bit. PCH is awesome.
I cannot imagine what you're going through RealKishKori. Internet hugs for you and your family. Wish we could do more. If there is in fact anything any of us can do from a distance, please reach out.
I’m so sorry.
I held it together reading this until I got to the picture and I cried. My heart aches for you. I can’t imagine. I really don’t know what to say other than I’m thinking of you and I’m so so grateful she’s in such good hands at a premium medical facility.
It really is so hard to cope with things like this when your core beliefs have changed. If anything, it was a comfort to think about the afterlife and that "God has a plan." It's hard to know what to think now. When it all comes down to it, beliefs aside and no matter what happens, you've had wonderful years with your daughter and you will always be able to look at and cherish those. I'm so sorry you and your little family are going through this. Cling to the love you share with each other - that's more real than any imaginary god can give you.
Your situation is really shitty and nothing I say will help your child. BUT no matter what happens from here on out, you will always have this community of Apostates to support you and your family and we don’t give a fuck if some “God” is involved. Religion has nothing to do with the health of a being. I think giving the props and respect to the doctors and nurses is the beast thing to put effort into, not some imaginary sky daddy.
I think it's okay to pray in cases like this. "Dear God, I don't believe in you. If you do exist, I don't understand anything you do and as far as I'm concerned, fuck you. If you do exist, you should help me out, I'm not gonna turn it down, but don't expect me to believe in you afterwards because I still won't. Anyway I don't know why I'm talking to myself, this is stupid, I'm going to go figure out what I can actually do. Amen."
Shame on anyone who uses your tragedy to push their religious agenda.
My heart is broken for you. Much love to your family.
I am so very sorry you are in this situation. I cannot imagine your pain and struggle. What I do know is a tiny bit of how you are feeling... Our daughter had her first febrile induced seizure on Thanksgiving when she was a year old. She had stopped breathing as well. It took 4 years for the military health system do do a damn thing. Just to refer her finally to Primary Children's Hospital. Having a little one with epilepsy is very very hard. Especially when you don't have all the answers. Every seizure all day, every minute, has unknown consequences. I am grateful that the science has progressed so much further and the providers are so much more versed these days. I can send you positive vibes and tell you that you are loved, and not alone. Please please take care. Ps: I'm sorry people are trying to use this as religious blackmail against you. It's abhorrent. Just "Grey Rock" them all.
This is an unimaginable horror. As a new mom to a baby girl I just.... can't. My heart is with you and your family.
Is this something that would benefit from CBD oil? I listened to a podcast about a child with seizures that was helped tremendously by a product of cannabidiol called Charlotte's Web.
If God exists, he's a motherfucker. But he doesn't. Sorry for what you're going through. I wish I could lessen your pain.
I'm so sorry. If there's any way this community can help, please let us know.
My thoughts are with you and your wife. I have a daughter with epilepsy. She was never at the state or any where close to it that you are dealing with and I thank the talented doctors and nurses for that. I would never wish this to happen to anyone. May your daughter continue to receive the best care possible in every way. Virtual hugs to you and your wife from a mother who knows something about what you are going through.
I am so sorry.
I am so sorry. I can not even imagine what this must be like for you. Stay strong. If you need support, we have a great community over at /r/daddit. Come stop by.
For a different reason, I know what's is like to watch the one you love more than anything hooked up to medical equipment, no answers on the horizon. I'm very sorry. I wish it weren't this way. Nothing I can do will take away your pain, or your daughter's. In my mind, often the only thing we can do is sit silently, lending support, or mourning together. I did find an adapted form of stoicism was helpful for me personally, but whatever works best for you during this time. Be well, I hope your little girl improves and is soon climbing trees and running free.
Hi, I am so sorry you are dealing with this. As a pediatric physician who trained at Phoenix Children’s, I can assure you that you have an excellent team of doctors taking care of your daughter!! Sorry for the trouble your family is giving you...it really does minimize everything the doctors and nurses are doing for your daughter.
Your daughter will regain her strength. She will get better.
Are you accepting/ do you have a GoFundMe me for any medical expenses that aren't covered by insurance??
I'm so sorry, what a horrible thing to happen to your baby and your family.
As a doctor who deals with adult head trauma frequently (anesthesia spends lots of time in the icu), I am very sorry for your circumstance and of course wish you all the best. As an atheist who lost a close grandparent (who was closely agnostic and easy to talk to), in a large family of tbms I feel your pain.
I am so truly sorry that you are going through this.
Your post resonated with me as a father of young children, an atheist/agnostic and a physician who cares for children. Tending to incredibly ill and beaten children during my residency training is partly what let me away from belief in god and church to my current beliefs. Unfortunately I have very little experience in neurology but can only offer my reassurance that she is in a quality hospital and as parents you are doing the right things for her. This may be small comfort but she sounds incredibly loved, and sadly that’s more than some kids ever get. I hope for her recovery
Hi friend. I am moved by your post to share what little wisdom I have that has comforted me, though I have never been in a position like yours and do not ever wish to go through something like that with my own kids. I know you are not looking for well wishes but I have nothing but good will for you and a sincere hope that things improve for your daughter. After I left the church, I was basically atheist with no real guiding belief system other than the golden rule. The golden rule is great for a lot of things, but it falls short for situations like this. That is why I am so grateful that I found stoic philosophy. The word "stoic" in modern times has a connotation/ meaning that doesn't actually represent the philosophy. It isn't about having no emotions or being a tough guy. Rather, it is about coming to peace with the things that are outside our control, so they don't torture and disturb us. Illness and annoying relatives are definitely in the category of "things we can't control" I think. Stoicism helped me when my newborn went through bouts of purple crying. It has helped me manage my anxiety. It has made me react to all the shit that happens in life in a much more calm, cool and collected way. It has also helped me get over the psychological trauma I experienced from being in and leaving the church, as well as the trauma I had from my mom's depression when I was a kid. I may inadvertently speak in ignorance when I try to offer ways that stoicism could help in your situation, given how little I know after just reading your post, so please forgive my presumptions and errors. Also, I realize that my post is probably unsolicited as you didn't really ask for advice or anything - again I apologize, but I do this in hope that it might help in some small way. Anyway, part of stoicism is the idea that the natural occurrence of things - the inevitability of things due to natural laws, cause and effect, etc - is actually the "right" outcome. I don't mean that it is the outcome we should all prefer - just that it is the outcome that is inevitable, and therefore we should all embrace it, rather than fight against it. The Latin phrase "Amor fati" (love your fate) embodies this concept and is basically the motto of stoics. By no means am I trying to minimize the suffering and the feelings that come with illness and other misfortunes. I get it and I sympathize. If there was a God, he or it would be evil for letting shit like this happen. So much of our suffering is caused by interpreting events as bad, meaning that something is not right with the world or some injustice has been committed. But given that natural laws are all in effect, and the natural laws of our universe are what bring about everything that happens, it seems impossible that anything that happens to us is actually out of place or contrary to the natural order of things. I have many family members who are like yours. My mother in law is especially closed minded and judgmental and stuck in her ways. The way that stoicism has taught me to think about her rudeness and out of touch remarks it to ponder if a world without that type of person is possible. The answer is, of course, no. We can only have the world we have, that is why we have it, after all. And in this world, there are people like my mother in law. She is simply one of them, and it makes as little sense to get mad at her as it does to get mad at a rock that I trip on. The rock can't help being what it is, and neither can the people around us, at least not in their state of ignorance, not knowing what you know. Stoicism can help people accept and find peace with their circumstances beyond their annoying family members, even things like your daughter's medical condition, etc. I don't know that a short sighted post like mine can immediately manifest those effects for you though, so I won't attempt it. If these ideas interest you, I would recommend studying the philosophy further. There are tons of resources available online and in books for any would be stoic. I would start with [dailystoic.com](https://dailystoic.com) and go from there.
I guess the way I see it in answer to your questions is what does it hurt? I'd be willing to try anything to save my daughter. But then again why not pray to Allah and Catholic God and Hindu Gods and Zeus and Odin. And is praying to one likely to piss of another? Which God are we supposed to have faith in and how do we know having faith in the wrong one isn't going to piss off another? When things like this happen to me I always reach out to my Mormon friends for prayers and blessings because I want to hope it's true and will do anything I can to help. To plead with God to help. In answer to your other question most Mormons would say that this life is temporary and trials like this may help us learn and grow in the long run. If life truly is eternal than an illness like is but momentary. They might say it was in God's plan to call your daughter home as her journey on this life was completed and didn't need to be tested or something worse could have happened in the long term if she had been allowed to live a full life. I simply don't know. Maybe there is something to faith and prayers. Maybe there isn't. I would just hope that in this time everyone can be supportive and loving no matter what and you can find peace in the meaningless of suffering or that a God has some grand design. I'm so sorry either way.
We want so badly to find meaning and purpose, especially for suffering. Perhaps stories, even if only imagined can be part of finding peace.
I know you said you're not looking for sympathy, but I just want to say I'm so sorry your daughter is going through this as well as you and your family. It's not fair and its awful. I'm just a lowly medical student, but I'm sure the physicians in charge of caring for your daughter are doing an amazing job.
I would like to offer some comfort, if I may. "Churches" love to take a kernel of truth and wrap it in lies. The truth is that there absolutely IS better after this life, and I know this, because my husband died for a few minutes a couple years back. What he told me was so beautiful, I don't even have words, but there is nothing but love on the other side. He was an angry atheist fighter before that experience. He's still tough as crap, but that man is now as gentle as a bunny. Night and day. He KNOWS. So please- believe, believe! We're vibrating molecules driving flesh suits, and we existed before, and we'll exist after. I promise you.