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.

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

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 :)