Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial

[MirnaMinkoff]

Actually Rett is fucking terrifying because they are aware of how sad their situation is. It's better to think of it like an extreme form of Parkinsons than mental re.tardation.

Spoiler: Rett sperg

A hefty percentage of them have no mental impairment, in the sense that they can understand what is going on. They just can't coordinate meaningful movements so speaking, signing, writing, pointing, anything that looks like communication to most people is out of the question. Even breathing can be difficult and they have these crises where they can't coordinate the movement to breathe properly and will involuntarily hold their breath or hyperventilate.

However, it's been shown that if they're treated like other children their age and instead of like potatoes, they can understand spoken language as well as or almost as well as their non-Rett peers. Some of them even learn to "speak" through eye gaze computers, like this little girl, although these things are prohibitively expensive.

The exception is usually the girls who have comorbid problems that take their own toll on mental development. Most of the ones that are truly intellectually disabled present with microcephaly from birth or intractable epilepsy in infancy, whereas other girls will be born totally normal but their head growth will slow and seizures develop as they age.

The second terrifying thing about Rett is it is progressive and goes through stages. They start off normal and hit all their milestones, including learning to walk and speak, then start to decline sometime between their first and second birthday (some earlier). At first it looks like autism; they might wring their hands frequently and have difficulty with eye contact and they start to miss milestones. Sometime around age 3 they'll start to rapidly decline. Usually the first thing to happen is they lose all control of their hands. Their hands just do all sorts of crazy shit they can't control like they'll look like they're washing them over and over and over again or they'll clench their fists behind their back and not be able to move them. They lose language, they lose the ability to walk, the terrifying breathing crises start, they cry or scream inappropriately and uncontrollably, etc.

Then it levels out and, with seizure control and a lot of PT, can improve. This is the stage cute little Maggie up there is in. She has learned to balance and coordinatewell enough to surf and skateboard and is able to create increasingly complex sentences through her eye gaze computer. Her parents are kind of amazing human beings and I've been in contact with them a few times in the past through Rett events. When there's something she wants to do that isn't yet adapted for her impairments, her dad finds a way to make it happen.

However, barring some breakthrough (and there's some really promising shit happening in the research world right now so it could be on the horizon), even ones who make remarkable strides like girls with the Zapella Variant (who can regain language skills after the rapid destructive phase) don't live very long and continue to decline in age. They enter a slow regression stage after usually a prolonged stabilization/improvement phase. Most only live into their 30s, 40 at best. Many die very suddenly of cardiac arrest from arrhythmias or GI obstructions caused by failure of even involuntary movements.

And the third terrifying thing is it's a de novo mutation in almost every case, meaning it's not something parents can predict. On the plus side it means the odds of having two girls (and they're almost all girls because boys with the mutation tend to die instead) with Rett in the same family are slim. On the other hand, since the parents aren't carriers of the mutant gene it's not like they can decide not to have kids because they don't want to risk that they bring someone with this awful condition into the world.

Edit: Ah, fuck, I just checked out Maggie's dad and she's starting to regress again. Lost seizure control and can't coordinate eating and drinking anymore so she's schedule for a PEG. Fuck this disease in the eye socket.

I think the absolute cruelest diseases are the ones that strike babies after all seems well. Parents worry during pregnancy and birth about diseases but once they go home from the hospital with an infant given a clean bill of health they feel safe. They bond and fall in love with the baby and start watching it grow and learn and then find out something is horribly wrong and their child is going to suffer and start losing abilities? I really don’t know how some parents manage, it’s got to be the most gut wrenching pain imaginable.

I have all the empathy in the world for parents who are hit with a unexpected and tragic diagnosis of an infant or toddler. These parents had no warning, were hit with an unimaginably tragic diagnosis and now do the best they can for their suffering child.

It makes people who do find out about terrible diseases during early pregnancy, and chose to continue it, all the harder to understand. But ofc most of the people who make such choices are extremely religious. They package it now as “God’s plan” but last century they were more up front with the we are “born to suffer” shit that seems far more appropriate to these cases.

That's seriously one of the most terrifying disorders I've ever heard of.

Oh, there’s plenty of them. Ever hear of Tay Sachs disease?

Spoiler

A author named Emily Rapp Black wrote a book “The Still Point of the Turning World” about losing her son to Tay Sachs disease. Tay Sachs is one of the worst disease imaginable, always fatal, terrible pain and debilitation and only discovered after a healthy baby suddenly starts regressing. It’s associated with Jewish populations and there are genetic prenatal tests for it now. But Emily, who was mostly Irish as was her husband, even had the genetic screening but she had a rare mutation that wasn’t detected. The book is beautifully written but I couldn’t finish it - it was too painful to read about so I can’t fathom how parents live through it.

 

[AnOminous]

Oh, there’s plenty of them. Ever hear of Tay Sachs disease?

It's so closely associated with Ashkenazi Jews that Israeli Jews as well as American Jews maintain a database of carriers of the gene and those with it are careful not to reproduce offspring with the disease. As a result, the disease is now essentially eradicated in the Ashkenazi population, although it still turns up from time to time in populations where it is less frequent, like French Canadians and Cajuns.

 

[MirnaMinkoff]

It's so closely associated with Ashkenazi Jews that Israeli Jews as well as American Jews maintain a database of carriers of the gene and those with it are careful not to reproduce offspring with the disease. As a result, the disease is now essentially eradicated in the Ashkenazi population, although it still turns up from time to time in populations where it is less frequent, like French Canadians and Cajuns.

Yes, to this day during any early prenatal appt in the USA they ask if the mother or father has any known Jewish hertitage specifically because of TSD and then test for it anyway regardless of the answer.
It’s estimated 1 in every 27 Jew in the USA carries the gene but thanks to genetic testing TDS now almost always occurs in non-Jewish babies ( It crops up most of the time in French-Canadians and Irish people.)

I’ll give Jewish people major props, they found a horrible genetic disease cropping up within their ranks and once they had the scientific tools wiped it almost within a generation. They even have an organization dedicated to ensuring carriers of genetic diseases don’t marry by keeping an exhaustive genetic database. Interesting to watch how different things happen when a religious community embraces science instead of shits on it.

 

[John Merston]

It makes people who do find out about terrible diseases during early pregnancy, and chose to continue it, all the harder to understand. But ofc most of the people who make such choices are extremely religious. They package it now as “God’s plan” but last century they were more up front with the we are “born to suffer” shit that seems far more appropriate to these cases.

Both are just coping mechanisms to keep themselves from thinking that their "Loving God" may not be so loving after all.

 

[Crunchy Leaf]

I can understand people who are religiously opposed to abortion not aborting their potatoes, especially if their faith involves infant baptism as a necessity for salvation. I don't understand keeping them artificially alive on medical technologies. That's not God's plan--that's Man's plan to play God.

 

[John Merston]

I can understand people who are religiously opposed to abortion not aborting their potatoes, especially if their faith involves infant baptism as a necessity for salvation. I don't understand keeping them artificially alive on medical technologies. That's not God's plan--that's Man's plan to play God.

It's kind of disingenuous to say that it's only God's Will if he's acting directly.
This joke sums it up.

A fellow was stuck on his rooftop in a flood. He was praying to God for help.
Soon a man in a rowboat came by and the fellow shouted to the man on the roof, "Jump in, I can save you."
The stranded fellow shouted back, "No, it's OK, I'm praying to God and he is going to save me."
So the rowboat went on.
Then a motorboat came by. "The fellow in the motorboat shouted, "Jump in, I can save you."
To this the stranded man said, "No thanks, I'm praying to God and he is going to save me. I have faith."
So the motorboat went on.
Then a helicopter came by and the pilot shouted down, "Grab this rope and I will lift you to safety."
To this the stranded man again replied, "No thanks, I'm praying to God and he is going to save me. I have faith."
So the helicopter reluctantly flew away.
Soon the water rose above the rooftop and the man drowned. He went to Heaven. He finally got his chance to discuss this whole situation with God, at which point he exclaimed, "I had faith in you but you didn't save me, you let me drown. I don't understand why!"
To this God replied, "I sent you a rowboat and a motorboat and a helicopter, what more did you expect?"

 

[MirnaMinkoff]

It's kind of disingenuous to say that it's only God's Will if he's acting directly.
This joke sums it up.

To accurately compare it to these babies’ situation the guy needs to hop on the helicopter only to be dropped into the middle of the Pacific Ocean with a rubber lifeboat and pack of sharks following.

These situations are always out of the frying pan and into the frier. A quick natural death is easy compared to a long, slow one that simply extends suffering.

In the joke if the guy would have taken the help from rescuers he would have been saved and gone on with a normal life, that’s never going to be the result with the babies receiving help from hospitals.

 

[John Merston]

To accurately compare it to these babies’ situation the guy needs to hop on the helicopter only to be dropped into the middle of the Pacific Ocean with a rubber lifeboat and pack of sharks following.

These situations are always out of the frying pan and into the frier. A quick natural death is easy compared to a long, slow one that simply extends suffering.

In the joke if the guy would have taken the help from rescuers he would have been saved and gone on with a normal life, that’s never going to be the result with the babies receiving help from hospitals.

I wasn't defending these fools at all. I'm just saying that their logic makes more sense if you don't look at God as some kind of micromanager.

 

[Sugar Sweet]

This post on Reddit today really hit me hard

Text below in case it gets removed (long)

Spoiler

I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do.
I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind.
We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been.
And what he is, is nothing.
He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby.
He has never made an attempt to interact with anyone or his environment.
I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get a child.
I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him.
Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments.
The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!"
Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all.
He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings.
He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference.
And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone.
He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either.
He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out.
I just want to never think of him again and I'm not sorry. And for that, I'm sorry.
Thanks for reading.
Edit: Thanks /u/piconeeks, for calling me a liar. Are you a medical doctor? If your Google Fu was any good you would have stumbled on 3p mosaic deletion-duplication syndrome. That is the disorder my son has. I've basically identified myself by posting that but hey, it's better than the PMs telling me to kill myself. If you look at the features of 3p deletion syndromes they look like Downs. My insurance didn't cover AFP testing which would have told us it WASN'T Downs and I didn't think we needed it. I had a regular ultrasound and a 3D. Both Drs were "99% sure it was Downs".
This post was absolutely NOT fiction. Instead the mods and especially /u/piconeeks just "decided" it was.
If anyone would like I'll doxx myself. You can see my ID to verify my name, my marriage license, and my husband's death certificate. I will then link you to the news article of the "freak industrial accident" that ended his life so you can see it's the same person.
As for not choosing hospice for my son - I can't. About a year ago I myself was hospitalized with severe depression and C-PTSD (there is proof of that too). During that time my late husbands mother petitioned to get control as my son's medical proxy and got it. I'm fighting it but it's a long, complicated process. There are competency hearings. There are statements from doctors and evaluations. Unless SHE oks hospice, which she refuses, I cannot decide that. I have custody. I cannot ake medical decisions. She agreed to residential care which I feel is the second best option. So, he's going into residential care.
As for "mistaking" a child choking with hitting, I was downstairs. I couldn't hear what my older son was saying. I only knew he was speaking. Go punch a blanket or, idk, a person with weak muscle tone. Then ask said person with weak muscle done to cough. They don't cough normally/forcefully. It's more a "strong puff". Similar to, again.... idk... a muted punch. When you're used to jumping at every strange sound, it's difficult to discern what's what sometimes.
So, /u/piconeeks..... anything else you'd like to know? Care to admit I just might be telling the truth? There were identify details I left out but guess y'all need them.

That poor lady. And lol at all the fucking redditors criticising her for calling the disabled son a potato and cucumber. Her life has been hell for seven years and she’s obviously grieving. Maybe once the disabled son is in care and she starts to heal she won’t resent him so much anyway. This lady was incredibly brave to speak so candidly about her experience, I wish nothing but the best for her and her older son and hope that they will now be able to heal and move on with their lives. And I assume that euthanasia isn’t an option, so I hope at least that the vegetable isn’t in pain, and passes away sooner rather than later.

 

[AnOminous]

That poor lady. And lol at all the fucking redditors criticising her for calling the disabled son a potato and cucumber. Her life has been hell for seven years and she’s obviously grieving. Maybe once the disabled son is in care and she starts to heal she won’t resent him so much anyway. This lady was incredibly brave to speak so candidly about her experience, I wish nothing but the best for her and her older son and hope that they will now be able to heal and move on with their lives. And I assume that euthanasia isn’t an option, so I hope at least that the vegetable isn’t in pain, and passes away sooner rather than later.

I fucking hate reddit. Redditors are utter garbage.

 

[lamp shade]

This post on Reddit today really hit me hard

Text below in case it gets removed (long)

Spoiler

I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do.
I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind.
We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been.
And what he is, is nothing.
He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby.
He has never made an attempt to interact with anyone or his environment.
I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get a child.
I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him.
Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments.
The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!"
Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all.
He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings.
He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference.
And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone.
He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either.
He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out.
I just want to never think of him again and I'm not sorry. And for that, I'm sorry.
Thanks for reading.
Edit: Thanks /u/piconeeks, for calling me a liar. Are you a medical doctor? If your Google Fu was any good you would have stumbled on 3p mosaic deletion-duplication syndrome. That is the disorder my son has. I've basically identified myself by posting that but hey, it's better than the PMs telling me to kill myself. If you look at the features of 3p deletion syndromes they look like Downs. My insurance didn't cover AFP testing which would have told us it WASN'T Downs and I didn't think we needed it. I had a regular ultrasound and a 3D. Both Drs were "99% sure it was Downs".
This post was absolutely NOT fiction. Instead the mods and especially /u/piconeeks just "decided" it was.
If anyone would like I'll doxx myself. You can see my ID to verify my name, my marriage license, and my husband's death certificate. I will then link you to the news article of the "freak industrial accident" that ended his life so you can see it's the same person.
As for not choosing hospice for my son - I can't. About a year ago I myself was hospitalized with severe depression and C-PTSD (there is proof of that too). During that time my late husbands mother petitioned to get control as my son's medical proxy and got it. I'm fighting it but it's a long, complicated process. There are competency hearings. There are statements from doctors and evaluations. Unless SHE oks hospice, which she refuses, I cannot decide that. I have custody. I cannot ake medical decisions. She agreed to residential care which I feel is the second best option. So, he's going into residential care.
As for "mistaking" a child choking with hitting, I was downstairs. I couldn't hear what my older son was saying. I only knew he was speaking. Go punch a blanket or, idk, a person with weak muscle tone. Then ask said person with weak muscle done to cough. They don't cough normally/forcefully. It's more a "strong puff". Similar to, again.... idk... a muted punch. When you're used to jumping at every strange sound, it's difficult to discern what's what sometimes.
So, /u/piconeeks..... anything else you'd like to know? Care to admit I just might be telling the truth? There were identify details I left out but guess y'all need them.

That poor lady. And lol at all the fucking redditors criticising her for calling the disabled son a potato and cucumber. Her life has been hell for seven years and she’s obviously grieving. Maybe once the disabled son is in care and she starts to heal she won’t resent him so much anyway. This lady was incredibly brave to speak so candidly about her experience, I wish nothing but the best for her and her older son and hope that they will now be able to heal and move on with their lives. And I assume that euthanasia isn’t an option, so I hope at least that the vegetable isn’t in pain, and passes away sooner rather than later.

I think so many of these mothers feel the same way but feel too guilty to admit it. This woman is strong to admit this is how she feels. She’s honest, unlike the moms praising god for keeping their *abominations* miracles alive. I hope she doesn’t suffer more since she doxed herself.

Also, she should make the grandma watch over it since she won’t sign off on hospice care. See how quick she changes her mind.

 

[John Merston]

This post on Reddit today really hit me hard

Text below in case it gets removed (long)

Spoiler

I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do.
I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind.
We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been.
And what he is, is nothing.
He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby.
He has never made an attempt to interact with anyone or his environment.
I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get a child.
I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him.
Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments.
The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!"
Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all.
He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings.
He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference.
And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone.
He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either.
He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out.
I just want to never think of him again and I'm not sorry. And for that, I'm sorry.
Thanks for reading.
Edit: Thanks /u/piconeeks, for calling me a liar. Are you a medical doctor? If your Google Fu was any good you would have stumbled on 3p mosaic deletion-duplication syndrome. That is the disorder my son has. I've basically identified myself by posting that but hey, it's better than the PMs telling me to kill myself. If you look at the features of 3p deletion syndromes they look like Downs. My insurance didn't cover AFP testing which would have told us it WASN'T Downs and I didn't think we needed it. I had a regular ultrasound and a 3D. Both Drs were "99% sure it was Downs".
This post was absolutely NOT fiction. Instead the mods and especially /u/piconeeks just "decided" it was.
If anyone would like I'll doxx myself. You can see my ID to verify my name, my marriage license, and my husband's death certificate. I will then link you to the news article of the "freak industrial accident" that ended his life so you can see it's the same person.
As for not choosing hospice for my son - I can't. About a year ago I myself was hospitalized with severe depression and C-PTSD (there is proof of that too). During that time my late husbands mother petitioned to get control as my son's medical proxy and got it. I'm fighting it but it's a long, complicated process. There are competency hearings. There are statements from doctors and evaluations. Unless SHE oks hospice, which she refuses, I cannot decide that. I have custody. I cannot ake medical decisions. She agreed to residential care which I feel is the second best option. So, he's going into residential care.
As for "mistaking" a child choking with hitting, I was downstairs. I couldn't hear what my older son was saying. I only knew he was speaking. Go punch a blanket or, idk, a person with weak muscle tone. Then ask said person with weak muscle done to cough. They don't cough normally/forcefully. It's more a "strong puff". Similar to, again.... idk... a muted punch. When you're used to jumping at every strange sound, it's difficult to discern what's what sometimes.
So, /u/piconeeks..... anything else you'd like to know? Care to admit I just might be telling the truth? There were identify details I left out but guess y'all need them.

That poor lady. And lol at all the fucking redditors criticising her for calling the disabled son a potato and cucumber. Her life has been hell for seven years and she’s obviously grieving. Maybe once the disabled son is in care and she starts to heal she won’t resent him so much anyway. This lady was incredibly brave to speak so candidly about her experience, I wish nothing but the best for her and her older son and hope that they will now be able to heal and move on with their lives. And I assume that euthanasia isn’t an option, so I hope at least that the vegetable isn’t in pain, and passes away sooner rather than later.

I actually looked up 3p mosaic deletion-duplication syndrome.

Individuals with 3p deletion syndrome typically have severe to profound intellectual disability. Most have delayed development of language skills as well as motor skills such as crawling and walking. While affected individuals learn to walk in childhood, their language ability usually remains limited. Some individuals with 3p deletion syndrome have obsessive-compulsive disorder (OCD) or features of autism spectrum disorders, which are conditions characterized by impaired communication and social interaction.

Either this kid got a really severe form of the disorder, or he suffered brain damage in utero or shortly after birth like our dear friend Kayli Whistler.

 

[MirnaMinkoff]

I think so many of these mothers feel the same way but feel too guilty to admit it. This woman is strong to admit this is how she feels. She’s honest, unlike the moms praising god for keeping their *abominations* miracles alive. I hope she doesn’t suffer more since she doxed herself.

Also, she should make the grandma watch over it since she won’t sign off on hospice care. See how quick she changes her mind.

They do, the fundie fairly tales online are mostly BS and it does a lot of harm to families who are struggling and think they must be bad or evil for not being joyous about giving up their lives to care for a child who is a lifelong potato. Even kids with less severe disabilities are extremely taxing and overwhelming for parents.

I used to know ppl who worked at homes to care for teens and adults with severe development delays. Divorce in families with such children was extremely high. The stress and difficulty of being a 24/7 caregiver destroyed many families. The snapshots you see online from fundies thanking god for their miracle are as realistic as Hallmark Movies are about dating and marriage. (Handsome young millionaire only needed a single mom of three to treat like a princess, and be the best dad to her kids, to be happy.)

You get none of the normal things that make the difficulties of parenting worth it with a potato kids, and you realize the struggles will never end and only get worse as the child ages and gets larger in size. It is very difficult, draining and depressing - to be shamed by ppl who aren’t in your shoes for having these totally normal feelings is toxic af. The people criticizing this woman should be ashamed.

 

[weaselhat]

This post on Reddit today really hit me hard

Text below in case it gets removed (long)

Spoiler

I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do.
I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind.
We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been.
And what he is, is nothing.
He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby.
He has never made an attempt to interact with anyone or his environment.
I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get a child.
I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him.
Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments.
The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!"
Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all.
He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings.
He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference.
And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone.
He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either.
He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out.
I just want to never think of him again and I'm not sorry. And for that, I'm sorry.
Thanks for reading.
Edit: Thanks /u/piconeeks, for calling me a liar. Are you a medical doctor? If your Google Fu was any good you would have stumbled on 3p mosaic deletion-duplication syndrome. That is the disorder my son has. I've basically identified myself by posting that but hey, it's better than the PMs telling me to kill myself. If you look at the features of 3p deletion syndromes they look like Downs. My insurance didn't cover AFP testing which would have told us it WASN'T Downs and I didn't think we needed it. I had a regular ultrasound and a 3D. Both Drs were "99% sure it was Downs".
This post was absolutely NOT fiction. Instead the mods and especially /u/piconeeks just "decided" it was.
If anyone would like I'll doxx myself. You can see my ID to verify my name, my marriage license, and my husband's death certificate. I will then link you to the news article of the "freak industrial accident" that ended his life so you can see it's the same person.
As for not choosing hospice for my son - I can't. About a year ago I myself was hospitalized with severe depression and C-PTSD (there is proof of that too). During that time my late husbands mother petitioned to get control as my son's medical proxy and got it. I'm fighting it but it's a long, complicated process. There are competency hearings. There are statements from doctors and evaluations. Unless SHE oks hospice, which she refuses, I cannot decide that. I have custody. I cannot ake medical decisions. She agreed to residential care which I feel is the second best option. So, he's going into residential care.
As for "mistaking" a child choking with hitting, I was downstairs. I couldn't hear what my older son was saying. I only knew he was speaking. Go punch a blanket or, idk, a person with weak muscle tone. Then ask said person with weak muscle done to cough. They don't cough normally/forcefully. It's more a "strong puff". Similar to, again.... idk... a muted punch. When you're used to jumping at every strange sound, it's difficult to discern what's what sometimes.
So, /u/piconeeks..... anything else you'd like to know? Care to admit I just might be telling the truth? There were identify details I left out but guess y'all need them.

That poor lady. And lol at all the fucking redditors criticising her for calling the disabled son a potato and cucumber. Her life has been hell for seven years and she’s obviously grieving. Maybe once the disabled son is in care and she starts to heal she won’t resent him so much anyway. This lady was incredibly brave to speak so candidly about her experience, I wish nothing but the best for her and her older son and hope that they will now be able to heal and move on with their lives. And I assume that euthanasia isn’t an option, so I hope at least that the vegetable isn’t in pain, and passes away sooner rather than later.

I know I would kill the kid myself and consider it a mercy killing. Am I a horrible person? Yes. I am. but I would know my suffering child was at peace.

 

[Peaches Demure]

I actually looked up 3p mosaic deletion-duplication syndrome.


Either this kid got a really severe form of the disorder, or he suffered brain damage in utero or shortly after birth like our dear friend Kayli Whistler.

It sounds like this 7-year-old is basically like a Hartley hooligan minus the severe dwarfism, which understandably makes it a lot more difficult to maintain. The hooligans (Lola especially) are/were small enough to basically be handled like a loaf of bread, and they did not have enough weight to develop pressure sores. If the kid featured in the Reddit post has a normal growth rate despite the obvious profound neurological impairment, he's likely at or over 50 pounds already, and while it might not sound like much, 50 pounds of deadweight is very cumbersome to manually manipulate and in the long run it's murder for your back and shoulders.

 

[John Merston]

I think so many of these mothers feel the same way but feel too guilty to admit it. This woman is strong to admit this is how she feels. She’s honest, unlike the moms praising god for keeping their *abominations* miracles alive. I hope she doesn’t suffer more since she doxed herself.

That's pretty much the standard fundie coping mechanism for when something bad happens to them-rationalize it as God's will.

What really gets my goat is how these parents go on to brag about how they're PERFECT COMPASSIONATE CHRISTIANS for bearing the burden of caring for their little abominations. That's exactly the sort of grandstanding about your faith that Jesus ridiculed the Pharisees for.

 

[AnOminous]

I know I would kill the kid myself and consider it a mercy killing. Am I a horrible person? Yes. I am. but I would know my suffering child was at peace.

With the descriptions of constant medical complications, the thing to do would be simply to disregard one of them and let nature take its course. Nobody would ask any questions.

 

[Pimpkin Pumpkin]

I actually looked up 3p mosaic deletion-duplication syndrome.


Either this kid got a really severe form of the disorder, or he suffered brain damage in utero or shortly after birth like our dear friend Kayli Whistler.

Looking it up is a bit confusing, as I think some of the results that come up are for different mutations of the same gene. I think Dr Google kept trying to suggest syndromes with extra chromosomal data, but I’m sure the lady said the kid’s condition was missing data.

I wish I knew what to search for in terms of relevant news articles; she mentioned potentially doxxing/powerlevelling herself because the situation was so unique. Either way, fingers crossed that she and her older boy can find some happiness. And that crazy fundies don’t try to mess with them.

 

[Crunchy Leaf]

Looking it up is a bit confusing, as I think some of the results that come up are for different mutations of the same gene. I think Dr Google kept trying to suggest syndromes with extra chromosomal data, but I’m sure the lady said the kid’s condition was missing data.

I wish I knew what to search for in terms of relevant news articles; she mentioned potentially doxxing/powerlevelling herself because the situation was so unique. Either way, fingers crossed that she and her older boy can find some happiness. And that crazy fundies don’t try to mess with them.

I think the only news article was the one about the husband's death, which presumably would not say anything about his children other than 'he is survived by...'
I hope the older son turns out alright. Good for her for giving up the potato. I've read a bunch of stories on r/AmITheAsshole from people whose parents expect them to care for their disabled sibling and they're always horrifying.

 

[Mrs Paul]

This post on Reddit today really hit me hard

Text below in case it gets removed (long)

Spoiler

I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do.
I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind.
We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been.
And what he is, is nothing.
He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby.
He has never made an attempt to interact with anyone or his environment.
I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get a child.
I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him.
Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments.
The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!"
Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all.
He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings.
He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference.
And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone.
He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either.
He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out.
I just want to never think of him again and I'm not sorry. And for that, I'm sorry.
Thanks for reading.
Edit: Thanks /u/piconeeks, for calling me a liar. Are you a medical doctor? If your Google Fu was any good you would have stumbled on 3p mosaic deletion-duplication syndrome. That is the disorder my son has. I've basically identified myself by posting that but hey, it's better than the PMs telling me to kill myself. If you look at the features of 3p deletion syndromes they look like Downs. My insurance didn't cover AFP testing which would have told us it WASN'T Downs and I didn't think we needed it. I had a regular ultrasound and a 3D. Both Drs were "99% sure it was Downs".
This post was absolutely NOT fiction. Instead the mods and especially /u/piconeeks just "decided" it was.
If anyone would like I'll doxx myself. You can see my ID to verify my name, my marriage license, and my husband's death certificate. I will then link you to the news article of the "freak industrial accident" that ended his life so you can see it's the same person.
As for not choosing hospice for my son - I can't. About a year ago I myself was hospitalized with severe depression and C-PTSD (there is proof of that too). During that time my late husbands mother petitioned to get control as my son's medical proxy and got it. I'm fighting it but it's a long, complicated process. There are competency hearings. There are statements from doctors and evaluations. Unless SHE oks hospice, which she refuses, I cannot decide that. I have custody. I cannot ake medical decisions. She agreed to residential care which I feel is the second best option. So, he's going into residential care.
As for "mistaking" a child choking with hitting, I was downstairs. I couldn't hear what my older son was saying. I only knew he was speaking. Go punch a blanket or, idk, a person with weak muscle tone. Then ask said person with weak muscle done to cough. They don't cough normally/forcefully. It's more a "strong puff". Similar to, again.... idk... a muted punch. When you're used to jumping at every strange sound, it's difficult to discern what's what sometimes.
So, /u/piconeeks..... anything else you'd like to know? Care to admit I just might be telling the truth? There were identify details I left out but guess y'all need them.

That poor lady. And lol at all the fucking redditors criticising her for calling the disabled son a potato and cucumber. Her life has been hell for seven years and she’s obviously grieving. Maybe once the disabled son is in care and she starts to heal she won’t resent him so much anyway. This lady was incredibly brave to speak so candidly about her experience, I wish nothing but the best for her and her older son and hope that they will now be able to heal and move on with their lives. And I assume that euthanasia isn’t an option, so I hope at least that the vegetable isn’t in pain, and passes away sooner rather than later.

I SWEAR though I read this before somewhere. I'm not saying she's lying, but the "you're why I don't have a father/mother" thing, it sounds so familiar.