James' shortness of breath and anxiety are out of control again. He feels as though the walls are closing in on him. It becomes a negative cycle that spirals downward. We know transplant is close, but at this point, it seems to be distant future. We know that it is not within our control. We need to protect against the helplessness. It too easily lends itself to hopelessness.

I slept on a couch in the hospital waiting room last night to be close to James. My presence provided him with the comfort to sleep for the first time in a few nights, but I cannot continue to remain at the hospital all day and all night. It is a challenging balance between self-care and taking care of James. I need to find a way to also take are of myself, or I will fall apart.

James had a bedside swallowing assessment. He has been given permission to eat ice chips. He is still not allowed food or liquids. The ice chips will be a small consolation and comfort measure. It is a step forward from dipping mouth swabs in orange juice and Coke for the simple pleasure of taste.

Physiotherapy continues to structure our days. James goes on the treadmill for four to seven minutes during the week, in addition to arm and leg weights, and a pedal bicycle on the weekends. He also sits in a chair for four to five hours each day. We make an attempt to complete our days with distractions of games, books, and movies.

The wait continues to increase in difficulty. It seems endless. We find hope and joy through our love for each other, and a dream of a future together.