sadness

I allow myself to feel the extent of my emotions, but the depth and intensity of these emotions translate into an exhaustion that is beyond the already constant fatigue. It makes it harder to move beyond the sadness (and the so-called negative cognitive bias of my depression). It is a conscious effort to focus on the positive. I consider the strength of our love for one another. I embrace the glow of our post-transplant friends. I imagine the possibilities for post-transplant health, and I remind myself of our hopes for a future together. It does not negate the sadness, but it allows for movement forward on these o so hard days of waiting for transplant. The wait feels different at this point. It feels critical and urgent, and I ache with a pain of uncertainties.

ECMO or ECLS (Artificial Lungs)

James is ready for transplant. He is building strength and endurance, and I have my own glow of pride for his drive and determination. He continues to make strides in physiotherapy on the treadmill and with arm and leg weights. He sits in a chair for several hours each day. James does everything within his abilities to maintain a positive resolve. There remain moments of acute anxiety and fear, but the tension does not linger beyond reassurance. There is safety in the presence of love, and I am grateful to be able to bring comfort and calm with warm hands and a smile of admiration.

I still arrive at the hospital to be James' morning sunshine. He is slow to rouse, but always with a light in his eyes. We create our own structure and routine within these endless days of waiting (and waiting). We sit quietly in light conversation or to a background of music. We play games on the iPad, and watch television on his computer. James reads in his bed, and I continue to contribute to an ever-growing collection of handmade knits. We are grateful for these moments of normalcy, but there is still a shadow of sadness in the knowledge that this has become our "normal". We are never alone. We are in constant wait.