Discussions of Death

We have been having some very interesting discussions. Lots of questions about what is the best way to die. What is extraordinary medical intervention. Why people of obvious faith are not willing to let love one's die. Whether there is a reason to be afraid. What to do after death. How can these conversations not happen after the news this week.

For years I have let M-E know what is to happen to me. She knows I am to be cremated and my ashes sprinkled in the Grand Canal at midnight from a Gondola. She told me that Whitney would have to go with her and make her do it because she would be afraid of getting caught.

She has been deeply disturbed by the measures that have been taken by the family of Terri Shauvio and the Pope with the feeding tubes. M-E has been horrified by all the children we see at Children's that have tubes. She does not want to have one. She hates IV's and anything where her body is assaulted.

We are going to have more discussions about this topic. We don't have to face imminent death but we all have death approaching at some time. I know that people are horrified to even have me mention that M-E could die but that is our reality. She is doing great and we are more and more hopeful each day as we travel this path. I actually have become more comfortable with the way treatment is going. I realize however, that the ongoing chemo keeps the cancer under control. My fear will come while we are in the less rigorous treatment times. Each time she has a bruise or feels tired, I will know is a return of the lukemia. No manner of hope or faith or positive thinking is going to make me less worried.

My heart just sinks and I go to a very very deep dark place when I think about us loosing this battle. I can go somewhere that is frightening and just so sad. Sad in a way that is hard to describe. I guess part of me wants to be prepared for the possibility. I have to think about how to deal with it and what I would do. By keeping that in mind, it keeps me cognizant of doing the best I can everyday as a parent and keeping connected to M-E. It keeps me doing the little extra special things that count. The movie when I am tired, the extra play date, the extra moments of snuggling and just spending time. It keep me headed to the right place and not get distracted.

I have made some changes. I don't answer the phone at night. I don't schedule anything on clinic days. I keep work at work. I check in with M-E a lot. She is sometimes hard to read. She often keeps a lot of disappointment close to her heart. She is such a trooper that we have to be careful that she is telling us what she really thinks and feels. She is having a good time here (Westin). She is very glad to be on vacation but she still feels that she is missing "Spring Break". Ordering breakfast in bed did help however. She and Sebla decided to ask me to try and open the ketchup instead of calling room service.