waiting for transplant

We have been in Toronto for five months now. James has been on the transplant list for three months. He has been in the hospital since December 25th (with a single day at home on December 28th in between admissions). This is his 6th or 7th hospital admission since arriving in Toronto. We are exhausted and drained of all energy and resources.

I want to write about the process of waiting for a double-lung transplant, but I don't know that I will be able to describe the experience.

We attempt to live our lives one day at a time, and focus on living in the moment. The speed of the surrounding world becomes incomprehensible. It is impossible to describe that feeling of watching the world move around you. Our lives are on hold. We are slowed to the pace of a single moment. We live in each and every breath, and for each and every breath. Everything may feel static, but nothing is static. It can all change without a warning sign. We persevere with hope, because there is no other choice. Transplant is the only alternative. We don't allow our mind to consider the other possibilities.

There is isolation. Our world becomes smaller and smaller. We build incredible friendships within the transplant communities. This eases some of the loneliness, but it comes with its own pain. We watch dear friends struggle for breath. We pray for everyone with the knowledge that not everyone will make it.

There is fear. The future is complete with uncertainties. It is impossible to make predictions. Each and every day can bring something different. We know the progression of the disease, but it is hard to prepare for deterioration. We lie to ourselves to counter the fear. This is for survival. It is all about attitude. 

There is a longing for something different. We struggle to imagine something different. We miss our lives. We miss ourselves. We miss each other. We are brought to tears by the smallest of memories; walking side by side and hand in hand, fall asleep back to back, and so forth.

One of the hardest part of the wait is the waiting itself. It could be days, weeks, or months. We all tell ourselves that our call will come soon. We are all aware that it could be a lot longer. We have to believe that our call will come in time. We have to believe that it will be the right set of lungs. We have to believe that it will be worth all this pain and sadness.

We find a hope and faith that we don't know had existence. We persevere through the hard days (and harder days). We wait, and wait, and wait.

p.s. I promise more photographs soon. 

love.
love.
love.