5.5 months + 4 weeks

It’s been 4 weeks. It still feels like I could drive back to Minnesota and the nurses would be there taking care of her. They’d tell me she was doing well. They’d say, “she’s got such beautiful hair! It’s growing so long and curly! She knows when you walk in the door. She always wakes up and fusses if you don’t greet her first-thing.” There would be talk of her blood pressure, her feeds, her growth. We would discuss the next surgery, the next milestone. She was supposed to have a swallow study to see if she had any significant problems eating by mouth associated with her genetic condition. In the meantime, she was supposed to be doing well on her peritoneal dialysis. She was supposed to come home. It’s been 4 weeks and the supposed-to’s will never come.