Monday, May 13, 2013

morning rambling

I didn't sleep last night. I saw every hour, and finally, at 4:30am, I let go of any hopes for sleep. I stumbled through a morning routine in a sleepless stupor with wide eyes and dread for the day ahead. I headed to the hospital in these early hours with the knowledge of a long day ahead. Now, I am silently typing in the corner of James' room, and watching him in the calm of sleep.

We are still waiting for transplant. How is that possible? We have been in Toronto since August 31, 2012. James has been at the (hypothetical) "top" of the list for at least three months. (There is not an actual hierarchical list). He is listed as "rapidly deteriorating" or rather, the highest priority amongst those waiting for transplant. It doesn't make sense.

We have seen many of our dear friends through the post-transplant recovery period. We have sent them warm wishes on their journies back home. We  have become absent from the treadmill room and the transplant community. We feel the isolation of long-term hospitalization. It is a painful and cruel existence in the ICU. We are finding it harder and harder to pass the time. We feel completely trapped.

We know the importance of remaining positive. It is not an easy shift away from the lure of our sadness and fears. We seek hope in transplant. It allows us to move forward without feeling a desperation or despair for the future. We are grateful that James is stable enough to wait for transplant. Gratitude can momentarily ease the pain. It serves as an important reminder: These are our precious moments. We can't take a single moment for granted. We must embrace them with a love of life. We must find a life in this existence.

1 comment:

  1. Adena - I have been following your and James' story and my one hope is for you to be together somehow. I want you to know something. I have a difficult struggle in my life. I would be ashamed to compare it to what is happening to the two of you, but it is very hard for me. The thoughtful, loving, honest way you write about your experience has given me comfort and a way to cope a little better with my pain. The way you tell you story is very real and genuine to me, and sharing yourself this way makes me feel a little less alone in my sadness. I can't tell anyone my story. You help me. Thank you.