surviving

Again, I am watching James sleep in the early morning. There is a peace and calm about him. He looks so very small surrounded by tubes and machines. It is hard to describe my love for this man. It is an intense yearning for nearness. There is complete reassurance in a simple handhold. I feel best in his presence. I feel safe in his presence. He doesn't need to be awake for me to look upon him with an enduring admiration for his incredible strength and courage. His drive and determination demonstrate a remarkable fight to survive. He exudes a deep passion for love and life. He always finds the light. He is my light. He is my fight. 

The days continue to be rough for James. He is experiencing a lot of pain and discomfort. He also continues to cough small amounts of blood (from the NG tube replacement last week and Heparin to prevent ECMO clots). He is very pale from low hemoglobin, and will need another blood transfusion. Each transfusion introduces antibodies into James' blood that could cause post-transplant complications. We are always aware of the potential for long-term side effects. 

James speaks with hope and optimism for a future beyond transplant. We do not allow ourselves to give into thoughts and feelings of despair, but there remains some level of discouragement. We are desperate to start our lives together. We miss the normalcies of life outside an institution. There is an ebb and flow to our moods. We give ourselves permission to feel down, but at the same time, a conscious effort is made to shift towards a more positive state of being. There is always reason for hope.