April 8, 2025
Day 68
4/8/25
Today felt like an extension of yesterday’s care conference. People who said they were coming were a no show and a tough conversation left me feeling especially stuck and that the bigger picture is still being missed.
The reality though is the struggle doesn’t lie with individuals or specialty teams. I really do respect and value Tate’s team members. The struggle really lies with the complexity that is Tate. Unfortunately, that’s sometimes reflected in decisions or choices that don’t always seem to make sense in the big picture. I only have one goal…to advocate for Tate and lessen her suffering. That’s the mission statement. If the actions/decisions don’t support it, we don’t do it. But most often it’s more about weighing the positives vs. negatives. And most things don’t feel like a win. I currently can’t even predict where we’ll land this week. Tate had another hard day but worked really hard to overcome her pain. It’s hard to imagine this everyday at home with no extra supports.