Post #2 - Friday December 23, 2011

As I sit here by the fire with a glass of wine, the house is quiet. Erin is with her friends. Dan is at the store. Shannon is sleeping. And I am attempting to put thoughts into words ...

The posts about our decisions the past 36 hours or so only tell part of the story. So many little pieces of information went into the decision to leave Memphis so we could be home for the holidays. With that, we took a leap of faith as Shannon's condition was deteriorating. But, having a ventriculostomy in Memphis on December 23rd would have meant Memphis was home for the holidays. To reiterate, the surgery would have improved Shannon's alertness and relieved the pressure in the brain, but it would not have anything to do with quality of life or improved right side function. And the pressure would most likely eventually build up there again, and we'd be right back where we started.

We made our decision that being at home was most important to us, and Dr. Wetmore supported our choice. She was a rock for us on one of the most difficult days in this 8 month journey. So beyond competent and compassionate. Amazing. I will never forget that.

When Dan said that we had frank discussions with Dr. Wetmore, he wasn't kidding. Discussing the unimaginable. Dr. Wetmore taking the time to talk to Erin. The end could be near. As in, 12 hours in the car near? Yes. Thankfully, as you know, that did not happen.

So we woke up today to a house decorated for the holidays and stocked with food and cards and presents. And yet, there was business to attend to. A wheelchair to pick up. A handicap parking sticker. A conversation with Dr. Rao about more unimaginable stuff. Conversations with Mayo's home hospice. The business of preparing for death.

Amongst all that today, was beauty and grace in being with Shannon. We've invited some family and friends to stop by, different people throughout the day, to see with their own eyes, to talk to Shannon, to cry, to feed her, to hold her hand, to be present.

Shannon feels no pain right now. Her breathing is becoming shallow, but she is eating and sleeping and listening and sometimes saying a few words. She told coach Bart today, "Tell the Rebels good luck." She is aware, but not fully conscious all the time. It could be hours, days, even weeks. We hope to spend the holidays with those we love without attending to the business of dying...

We are so conscious of all who have shared this journey with us and we want you to all be a part of this stage, too. We will try to continue to share, to let you in, as that has been such an important thing, for all of us, but especially for Dan and I.

But, our pain is ours to carry.  Not yours. And it is Christmas time. A time to focus on those you love. Those dearest to you. That is our plan. Make it yours, too ...