child.

A little background:
Our daughter’s body is slowly shutting down after 22 yrs of health issues stemming from a major heart defect at birth. She had a number of surgeries her first 6 years and then was in a pretty stable state for a number of years and was able to attend school and graduate HS. She is a smart kid but is developmentally delayed (mostly socially and emotionally) and functions similarly to a 12 yr old.

About 18 months ago we started to notice things changing. working with our medical team we pursued a number of potential treatments and transplant options but never found the elusive silver bullet.

We moved to a palliative care approach last summer after exhausting all medical options available to “get better”. Through all of this she has been a real fighter. She is stubborn, determined, and probably the toughest person I’ve ever met. At the same time she can melt your heart with a simple smile, a sad eyes look, or a kind word.

After 6 months of palliative care things are starting to deteriorate and we are having to ramp up pain management and some of the other things we are doing to make her comfortable.

While I am 95% sure she knows what is happening and where this ends we have not had an “official” you’re dying conversation with her. We have tried to start the discussion a few different ways and been told basically to “leave me alone” and “I don’t want to talk right now”. I will add that she has dealt with the death of a grandfather, my wife’s BFF, and a family dog in the last 18 months. Her New Years wish for 2024 is that “we don’t lose anyone this year”. Broke my heart.

My wife and I are at peace with end-of-life and all that entails but we are a bit stuck on whether we need a confirming conversation with her. We want to be honest with her and certainly not hide anything. We are ready to answer any questions she has but aren’t sure if waiting for her to ask is the best approach.

I am sure there are others on CB who have struggled with similar issues. I would love to hear your thoughts if you are willing to share. Feel free to BM if you don’t want to discuss in an open forum.

Again, we are at peace with where this is going but we know things will get harder. While miracles are still possible we recognize that we’ve had 20+ yrs of miracles just to get here.