Bess, thanks for sharing. Being proximate to death is often utterly overwhelming, experiences vary, they can evolve (and profoundly) over time. It's especially rough when someone seems ripped from us too soon, as in your case. I won't tell you how to grieve, as that's your own thing, but I'll strongly suggest that your feelings and responses are legitimate, and to the extent you can simply exist within them, that's probably for the best.
Your role in Jake's story really has been incredible of itself, and yes, you're the one who we hope will pick up the pieces and carry on, soon with your daughter all going well (words probably uttered and heard too often, I'm sorry). One. Day. At. A. Time.
It sounds as if you have support. Use it and make your needs clear.
I hate offering unsolicited advice but will submit to this one item: "How Not to Say the Wrong Thing" is a 2013 LA Times essay by Barry Goldman, which offers a "ring theory of trauma". The ring is centred on the patient, with immediate caregivers, family, friends, and others, ultimately strangers on the Internet and Space Alien Cats, in the outermost rings. Dumping flows out, comfort flows in.
It's the most succinct guideline for how to act around someone with a chronic or terminal condition I've found, and corresponds well to my own experience in multiple instances. I hope it's of use to you and those reading this.
I've been scanning HN for what we all know will be the final update. I pray it doesn't come too soon, or too late. Peace to you, Jake, Sam, and all.
Your role in Jake's story really has been incredible of itself, and yes, you're the one who we hope will pick up the pieces and carry on, soon with your daughter all going well (words probably uttered and heard too often, I'm sorry). One. Day. At. A. Time.
It sounds as if you have support. Use it and make your needs clear.
I hate offering unsolicited advice but will submit to this one item: "How Not to Say the Wrong Thing" is a 2013 LA Times essay by Barry Goldman, which offers a "ring theory of trauma". The ring is centred on the patient, with immediate caregivers, family, friends, and others, ultimately strangers on the Internet and Space Alien Cats, in the outermost rings. Dumping flows out, comfort flows in.
<https://www.latimes.com/nation/la-oe-0407-silk-ring-theory-2...>
It's the most succinct guideline for how to act around someone with a chronic or terminal condition I've found, and corresponds well to my own experience in multiple instances. I hope it's of use to you and those reading this.
I've been scanning HN for what we all know will be the final update. I pray it doesn't come too soon, or too late. Peace to you, Jake, Sam, and all.