Comment by Jare
1 year ago
This is an amazing writeup. I have lived the past 10 years in a situation with many parallels to yours, and at the same time unimaginably different.
When you say "It's not hard" you hit on one of the things I've always found difficulty to tell people. It's not hard, because it's the only thing to do. That certainty means it's painful, tiring, and many other things; but not hard.
My experience is that it only becomes really hard when you contemplate alternatives, imagine things being different, or daydream of a different life.
> contemplate alternatives, imagine things being different, or daydream of a different life
I lost my mother over 23 years ago, and one of the the hardest things for the longest while was anytime I would travel somewhere amazing, whether a city or country or the top of a mountain, knowing I'm seeing something she never saw, but might have, and what a kick she'd get out of it. It's always been in the back of my mind.
Now the hardest thing is realizing she'll never know her granddaughter, and vice-versa. Not to mention how much my daughter looks like her. But that's also a beautiful reminder of the cyclical nature of life and all its seasons.
Same. My mom was so unbelievably excited about eventually having grandchildren, it was one of her biggest desires after she'd lost her job and stayed home to take care of my various illnesses. She passed 2 years and 2 days ago. She had a long and... there still aren't words to describe the absolute horror. But i stayed there because i was the only one who could work from home and who could stay positive in the face of the impossible.
By the time i realized i should've been having every conversation possible she could no longer speak well, it just went one day, i have a recording of her struggling but i don't think i could ever bring myself to listen.
One new thing that's cropped up is thinking how much she'd enjoy some new youtube video i saw, or how funny she'd think a new "advertising photoshop fails" subreddit would be. And yeah, the grandchildren. There's a strong possibly she will have never even met my future wife. She didn't see my brother get married. She won't see me get aPhD. She was 60 and was there for so many things but the cycle just keeps moving on.
Life simply takes things, we're the ones who think we deserve them. The fact that we're anything at all is the greatest gift and the greatest pain. But i believe Tolkien said, "What punishments of God are not gifts"
My hands have similarities to both my mother and father who both died recently. When I'm stroking my 5 year old's face as he falls asleep (and he takes bloody ages to fall asleep) I like to think I'm giving them a chance to touch the grandson that they knew all too briefly.
(Great job autocorrect - almost changed "stroking" to "striking" there!)
Isn't it hard to do though? I fear I may be a monster for thinking this, but is the pain of the son and yourself worth it?
Meaning, is all this being done for some hope that the miracle pulls through? What if you knew with absolute certainty there was no recover and no brain activity, only pain.
So this is hard if you have a choice, what is the right choice?
In case it helps — I actually have no expectation and hope of a miracle. Having my hopes absolutely crushed is what gets me through the day. The fear and uncertainty of having something to lose was and is far worse (to me) than the grinding daily commitment to meet his needs.
Maybe a miracle will happen one day but I have no expectation of it. I expect him to stay in that bed for years until he dies.
I see, thank you for the clarification and sharing. I don't think I could do what you're doing. That is what I mean by choice.
I'm holding my 6 week baby boy right now as he sleeps. It is painful just to read your story, but also humanizing and helpful in a way.
As someone who is very risk averse I wonder if using certain philosophies can help hedge against this kind of pain. But then it might have it's own consequences. I've used this in the past with partners (visualizing them leaving) but I'm not sure it would work here.
Is it possible to love your son so much but not feel an equal amount of pain with loss.
Do you think he has not already turned this question over in his mind for many agonizing hours?
I think he has thought about this question and 1000's of other scenarios that we will never know.
I write "you" figuratively, interchangeably as "one" or "oneself". I don't expect a reply. I'm asking for others sake or just simply to put my own thoughts down.