Rocky week

I haven't posted lately because things have been a bit on the glum side lately.

Easter was fine. We got together with both families. Stress abounded, tensions were high, the usual tears were shed. I threw out my back. Sadie and Katie are exhausted and today has been a long lesson in payback for not letting them get enough sleep yesterday. It was a typical holiday (sigh).

The friends that we made at UVA Medical Center are still there with their little girl, Maddie. Maddie is a day older than Sadie. They are at the end of their journey with Maddie, and she is preparing to leave this world. It's eating at me that such a perfect little baby has had to suffer, and that Jeff and Kathy couldn't be normal parents. I feel so guilty that Sadie is OK, when Maddie is not. I feel so badly for them that this is their only child, and they have barely had time to hold her, and never had a single "normal" moment without tubes, schedules, meds and stress. They are having a tough time letting Maddie go, and understandably so. I just hope that she is not suffering, and that Jeff and Kathy will have the strength to be able to say goodbye on their own terms. Please keep her and her parents in your prayers.