Her Whole Face

Today I got to see Frankie's whole face. Without the tape. Without the feeding tube. Her whole gorgeous, perfect little face. I can count the number of times we've got to experience this joy on one hand. Usually the tube is in and out in a minute flat and there's no time for anything. Today though we got a few minutes of tube-free joy. She looked so different. I bawled my eyes out. This is what my daughter is meant to look like.

It's not fair, on her or I, how short-lived this moment was. It's not fair that she got herself so upset while they removed the old tube that she screamed for minutes on end, went bright red and threw up from the stress of it all. It's not fair that it took what felt like a lifetime for them to put the new tube in. That she was held down while they threaded the plastic tube up her nose and down her throat while she screamed and cried and coughed. It's not fair that they had to hold her and the tube in place by pressing down on her face while she thrashed around, her screams echoing off the walls of the small room, while they tried to get a sample from her stomach before taping the tube in place.

It's not fair that I now have to spend every day looking at my daughter with the tube and tape back in place and it's not fair that she has to spend every day with a tube in her throat, poking the wall of her stomach.

None of it is fair.