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Imagine what happens when it doesn't go right with children and you're in this situation. I have a daughter who caught bacterial meningitis at birth and had to

Imagine what happens when it doesn't go right with children and you're in this situation. I have a daughter who caught bacterial meningitis at birth and had to have a brain surgery to solve the infection. Her existence is tragic, she is with us but she is going to have a lifetime of challenges and we've already been through the ringer. Now ever day is like waking up with a mortal wound, and to have other kids who need our help and support, its not rewarding. Add in a job where the culture is toxic and you're being persecuted for doing your job well. its not worth it... none of its worth it.

bckr 5y ago
Thanks for expressing this. I think it gets left out of the conversation due to stigma. People are expected to say how happy they are to have disabled children because anything less is, I suppose, considered inhumane. However, it's very humane to bring to other people's attention that their prospective children might not be healthy.
- emodendroket 5y ago
  They might not, but is there any way you can live where you're free from the risk of terrible calamity? If you become close to another person, you don't know if they'll get hit by a car tomorrow and suddenly leave you grieving in a way you'd never be if you never met them in the first place.
  - bckr 5y ago
    > is there any way you can live where you're free from the risk of terrible calamity? No. > and suddenly leave you grieving in a way you'd never be And we should consider that when deciding to enter a relationship.
    - emodendroket 5y ago
      The notion of a life lived without any relationships with other people seems too grim to contemplate.
      - bckr 5y ago
        I find it helpful to contemplate just that. Helps me realize that I am in all of my relationships through choice and to appreciate them before their inevitable end.
sjtindell 5y ago
Thanks for sharing this. I hope you find a way through and wish your family the best.
nickd2001 5y ago
Very sorry to hear this. Its hugely challenging, in ways that IMHO most people can't comprehend /imagine. In my experience, sibling(s) of a severely disabled person, while they get things put on them that are unfair, also can emerge with great resilience, caring nature, and extra qualities they wouldn't have otherwise had. Perhaps leading to greater happiness. "What doesn't kill you makes you stronger" . IMHO there's no real problem caring for a severely disabled person, if the rest of society understood a bit more, and things were better resourced, high quality respite easily available etc, people were willing to pay a bit more tax to help others in need. But the world isn't like that. There are hacks though. Thank goodness for working in tech, where one can at least earn decent money and throw money at challenges. Could you and your partner work 4 days a week each and have a weekday off together? That may be an effective way to get respite and some time together. Best wishes :)

bckr 5y ago

Thanks for expressing this. I think it gets left out of the conversation due to stigma. People are expected to say how happy they are to have disabled children because anything less is, I suppose, considered inhumane. However, it's very humane to bring to other people's attention that their prospective children might not be healthy.

emodendroket 5y ago
They might not, but is there any way you can live where you're free from the risk of terrible calamity? If you become close to another person, you don't know if they'll get hit by a car tomorrow and suddenly leave you grieving in a way you'd never be if you never met them in the first place.
- bckr 5y ago
  > is there any way you can live where you're free from the risk of terrible calamity? No. > and suddenly leave you grieving in a way you'd never be And we should consider that when deciding to enter a relationship.
  - emodendroket 5y ago
    The notion of a life lived without any relationships with other people seems too grim to contemplate.
    - bckr 5y ago
      I find it helpful to contemplate just that. Helps me realize that I am in all of my relationships through choice and to appreciate them before their inevitable end.

sjtindell 5y ago

Thanks for sharing this. I hope you find a way through and wish your family the best.

nickd2001 5y ago

Very sorry to hear this. Its hugely challenging, in ways that IMHO most people can't comprehend /imagine. In my experience, sibling(s) of a severely disabled person, while they get things put on them that are unfair, also can emerge with great resilience, caring nature, and extra qualities they wouldn't have otherwise had. Perhaps leading to greater happiness. "What doesn't kill you makes you stronger" . IMHO there's no real problem caring for a severely disabled person, if the rest of society understood a bit more, and things were better resourced, high quality respite easily available etc, people were willing to pay a bit more tax to help others in need. But the world isn't like that. There are hacks though. Thank goodness for working in tech, where one can at least earn decent money and throw money at challenges. Could you and your partner work 4 days a week each and have a weekday off together? That may be an effective way to get respite and some time together. Best wishes :)