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Old 03-27-2018, 12:39 PM
 
Location: colorado springs, CO
3,997 posts, read 1,776,085 times
Reputation: 13784

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" ... How do you hold a moonbeam in your hand?"
"Maria" -The Sound of Music

That is my dad's "about us" song, about my mom; Maria, who died 1 year & 2 days ago. It's written in his will for that song to be played during his wake.

In the last year, I have learned so much about Maria, that I did not know about "Mom". And it really bothers me that I can't honor her by living a good life. After caregiving for over a decade & having left the workforce to do so at age 39; that ship has sailed. Not elder caregiving. Disabled child caregiving. Meaning this is it:

There will be no respite adequate for me to be able to return to my career & build a good life. Both I & the disabled child she loved so much will live in poverty & that is something she was afraid of. But before she died she said I was her hero. So I must be doing something right. Why does it have to result in something so wrong?

One thing I learned was the extent to which she would go to to do the right thing. There are people who hurt my mom because she dared to stand up for what was right. I'm going to pick up where she left off. It's the only thing I have to give. It's my "One year later resolution". I want to make her proud.

"Oh, how do you solve a problem like Maria ..."-hi.jpg

Me & my mom, summer 1968. Grant Heights, Tokyo, Japan.
I was born at Tachikawa AFB, as was my sister who was born in Summer of 1969. Dad was USAF stationed at PACOM Elint Center (PEC) at Fuchu Air Station West of Tokyo.
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Old 03-27-2018, 01:34 PM
 
Location: Somewhere in northern Alabama
16,846 posts, read 51,301,408 times
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Children often don't get to understand their parents as fully functioning individuals with strong and weak points until after their passing. That you celebrate your mom's strength and morality is a testament to her.

On poverty: There is poverty and there is being impoverished. A person without money but with the will to continue to learn life's lessons and improve themselves is not impoverished. Sometimes that means picking up a library book instead of watching a tv show, sometimes it means being creative within the bounds of limited funds, sometimes it means having friends and acquaintances that CAN give respite, no matter how brief.

You have to take care of your basic needs before you can begin to properly take care of the needs of another. It can be difficult to do that if you are a giving person, but achieving a balance can make life easier for everyone, and is a lot more resilient in times of illness or injury.

As an example, you may be able to get together with two or three other people who are also caring for disabled children. Once the trust and understanding needed is achieved, you can then "spell" each other to each have some free time or time outside of the caregiving world.

Having worked in an institution, I'm well aware of how draining and debilitating constant caregiving can be. Please take care of yourself and try to avoid the martyrdom for another trap. Reach out for help and don't be shy about it.
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Old 03-27-2018, 02:55 PM
 
Location: colorado springs, CO
3,997 posts, read 1,776,085 times
Reputation: 13784
Quote:
Originally Posted by harry chickpea View Post
Having worked in an institution, I'm well aware of how draining and debilitating constant caregiving can be. Please take care of yourself and try to avoid the martyrdom for another trap. Reach out for help and don't be shy about it.
Thank you, sir, for your kind words. Yes; I am drained. Just not empty. Not yet.

Thanks to my parents, I know that in reality I am rich. I have a 14 year old son who, although unable to truly “grow up”, remembers from whom he came. And I don’t mean me or his dad. It’s humbling.
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Old 03-29-2018, 01:00 AM
 
Location: Mid-Atlantic
22,706 posts, read 21,750,727 times
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My son seems to be functioning in society. I'm not sure how, but he does. His neurologist said he'd never seen a person with brain scan results like his who could walk and chew gum at the same time. He has constant minimal seizures. I think his OCD keeps him on task.
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