March 22, 2025
Day 51
Thank you for all the encouragement and kind words. The end of this week brought feelings of defeat and doubt that we’re going to get Tate to a better place. There’s a grieving that comes with added diagnoses. Not so much rooted in the individual dx, but more so in that it represents further decline, uncontrolled autoimmune issues with few options. And there’s a feeling of helplessness when you feel out of ways to advocate or to make things better.
So, we move to coping as parents and how to help Tate cope with what’s in front of her. But before that you have to accept. And that’s hard too.
Medically, we continue to wean the fentanyl and increase the belbuca. Tate’s body isn’t loving it. But Tatum is so strong. Her resiliency and desire to push through day after day astounds me.