5 ms·

I have a 10 year old daughter with a very rare genetic condition. She has no one to care for her if I pass away. She can't yet talk and operates at a 2year old

I have a 10 year old daughter with a very rare genetic condition. She has no one to care for her if I pass away. She can't yet talk and operates at a 2year old level, autism is just one of the side effects of this genetic condition. She has learning challenges as well, can't read, write or understand very well. I need to leave behind substantial assets or money for her for her long term care. I would love to retire early too but I don't seem to have that luxury because if I do, I don't know what I will leave behind for my daughter's care. I've switched several jobs over the past decade only to find that there is nothing fulfilling from a job perspective. Nothing that adds value to other people's lives or even to my own, aside from a paycheck to pay for my own funeral and my daughter's future care. When the time comes I don't know how my daughter would manage my funeral and which bad people will try to take away everything that I leave behind for her for her care. I can't afford to give away 30% of my worth to law firms that will allegedly guarantee my daughter will be safe from some money hungry assisted living centers or other such nasty organizations and opening a special needs trust fund is equally expensive. I think I'll work my whole life or whatever is left of it, I'm 43 and also work in tech and this is a dying industry with AI taking up so many jobs like automation did in the automotive industry.So I'm not sure how many more good years I'll be able to work for, so I'm just going to put my head down and work humbly while I can.

farts_mckensy 2y ago
That's so difficult, man. I'm sorry. It shouldn't be this way.
nine_zeros 2y ago
I can’t begin to imagine the weight of your story, and I know there are no perfect words to ease the pain of living this life. Please know that my thoughts are with you during this. I can only imagine the depth of your concern for your daughter’s future, and I wish there were more I could offer. For now, please accept my deepest sympathy and a warm, virtual embrace.
rexpop 2y ago
[flagged]
- andai 2y ago
  I visited some relatives who are Jehovah's Witnesses. I was blown away by how rich their social life was. They hung out with people who lived nearby all the time. I'm sure that kind of lifestyle also exists outside of a religious context, but it was quite striking. I've never seen anything like it. It made me wonder what life used to be like a hundred years ago, and what we've lost, or given up. I guess church is the prime example of a Third Place, which appear to be in short supply.
  - acdha 2y ago
    In that case, however, you also see the drawbacks. The Witnesses discourage socialization outside of the church and also use shunning as a method of social control: if you disagree with the church on anything, your options are to acquiesce or lose your entire social network, even family members. I share the desire for more social lifestyles - I think suburbanization is a huge driver of this - but want a secular form which doesn’t have the drawbacks many religions offer.
    - andai 2y ago
      Yeah, I've been wondering what the special sauce is. Is the religion part necessary to hold the whole thing together? e.g. you could replicate the other aspects, but would it last? It seems like people derive significant meaning from the religious aspect. Though this may also extend to ideology in general (e.g. political groups, or Effective Altruism meetups for example). The "shared mission" seems to be an important part of it.
      - arp242 2y ago
        I was a scout leader in my late teens and early 20s, and that had quite a lot of "sociality" to it, that went beyond "meet up for drinks occasionally".
melagonster 2y ago
[flagged]
- maxaf 2y ago
  Parentification is never a solution. It’s merely a cruel way to spread misery to another person who doesn’t deserve it.
  - anonexpat 2y ago
    Many people find it fulfilling to help those in need.
    - eddd-ddde 2y ago
      Yes but expecting someone to feel that way is irresponsible and selfish.
    - robocat 2y ago
      Sure: but ideally it is a choice not an obligation.
  - Der_Einzige 2y ago
    [flagged]
    - deleted 2y ago
      [deleted]
- moffkalast 2y ago
  [flagged]
- silver_antlers 2y ago
  That would be an incredibly cruel thing to do to a child.
- urda 2y ago
  This is awful and cruel to do, no.
tasuki 2y ago
> I have a 10 year old daughter with a very rare genetic condition. She has no one to care for her if I pass away. Wow that sucks. When my daughter was one and half years old, her mom passed away after one year of absolutely exhausting illness. I thought it was tough to be left a single father, but hey my daughter is perfectly healthy, so maybe I have it easy...
93po 2y ago
Have you looked at the social welfare programs in other countries and considered moving there? It would be a lot of work to get citizenship there for you and then your daughter, but it sounds entirely feasible within a decade
- robocat 2y ago
  Social welfare can be flaky too. I suspect especially so in countries with increasing numbers of retirees. In New Zealand it is fantastic that we have social welfare as a last resort for the desperate, and sometimes it can be amazing. But too often it doesn't work out well.
robocat 2y ago
> I can't afford to give away 30% of my worth to law firms that will allegedly guarantee my daughter will be safe from some money hungry assisted living centers or other such nasty organizations Is there no-one you are close to that you could trust to look after money? It's a hefty burden but don't we usually have someone in our extended family or friend network that is trustworthy? I certainly agree that I personally wouldn't want to trust most professionals in the business.

farts_mckensy 2y ago

That's so difficult, man. I'm sorry. It shouldn't be this way.

nine_zeros 2y ago

I can’t begin to imagine the weight of your story, and I know there are no perfect words to ease the pain of living this life. Please know that my thoughts are with you during this. I can only imagine the depth of your concern for your daughter’s future, and I wish there were more I could offer. For now, please accept my deepest sympathy and a warm, virtual embrace.

rexpop 2y ago

[flagged]

andai 2y ago
I visited some relatives who are Jehovah's Witnesses. I was blown away by how rich their social life was. They hung out with people who lived nearby all the time. I'm sure that kind of lifestyle also exists outside of a religious context, but it was quite striking. I've never seen anything like it. It made me wonder what life used to be like a hundred years ago, and what we've lost, or given up. I guess church is the prime example of a Third Place, which appear to be in short supply.
- acdha 2y ago
  In that case, however, you also see the drawbacks. The Witnesses discourage socialization outside of the church and also use shunning as a method of social control: if you disagree with the church on anything, your options are to acquiesce or lose your entire social network, even family members. I share the desire for more social lifestyles - I think suburbanization is a huge driver of this - but want a secular form which doesn’t have the drawbacks many religions offer.
  - andai 2y ago
    Yeah, I've been wondering what the special sauce is. Is the religion part necessary to hold the whole thing together? e.g. you could replicate the other aspects, but would it last? It seems like people derive significant meaning from the religious aspect. Though this may also extend to ideology in general (e.g. political groups, or Effective Altruism meetups for example). The "shared mission" seems to be an important part of it.
    - arp242 2y ago
      I was a scout leader in my late teens and early 20s, and that had quite a lot of "sociality" to it, that went beyond "meet up for drinks occasionally".

melagonster 2y ago

[flagged]

maxaf 2y ago
Parentification is never a solution. It’s merely a cruel way to spread misery to another person who doesn’t deserve it.
- anonexpat 2y ago
  Many people find it fulfilling to help those in need.
  - eddd-ddde 2y ago
    Yes but expecting someone to feel that way is irresponsible and selfish.
  - robocat 2y ago
    Sure: but ideally it is a choice not an obligation.
- Der_Einzige 2y ago
  [flagged]
  - deleted 2y ago
    [deleted]
moffkalast 2y ago
[flagged]
silver_antlers 2y ago
That would be an incredibly cruel thing to do to a child.
urda 2y ago
This is awful and cruel to do, no.

tasuki 2y ago

> I have a 10 year old daughter with a very rare genetic condition. She has no one to care for her if I pass away. Wow that sucks. When my daughter was one and half years old, her mom passed away after one year of absolutely exhausting illness. I thought it was tough to be left a single father, but hey my daughter is perfectly healthy, so maybe I have it easy...

93po 2y ago

Have you looked at the social welfare programs in other countries and considered moving there? It would be a lot of work to get citizenship there for you and then your daughter, but it sounds entirely feasible within a decade

robocat 2y ago
Social welfare can be flaky too. I suspect especially so in countries with increasing numbers of retirees. In New Zealand it is fantastic that we have social welfare as a last resort for the desperate, and sometimes it can be amazing. But too often it doesn't work out well.

robocat 2y ago

> I can't afford to give away 30% of my worth to law firms that will allegedly guarantee my daughter will be safe from some money hungry assisted living centers or other such nasty organizations Is there no-one you are close to that you could trust to look after money? It's a hefty burden but don't we usually have someone in our extended family or friend network that is trustworthy? I certainly agree that I personally wouldn't want to trust most professionals in the business.