Ice Cream and Ovaltine

Two of the few foods Joshua has requested over the past two days. And Coke, of course. He is sleeping much of the time now, has lost so much weight and is very, very weak. But, he is comfortable - no pain at all. As always, it is difficult to know with any certainty if this really is the final stage in his journey, or if he'll come to another plateau. It's hard to imagine him continuing like this for very long, though. Hospice is very reluctant to give any estimate in how long they think he might have. Their experience (and we've asked more than one hospice nurse) is that as soon as they say a patient has two weeks to live, the patient is gone in a matter of days. Or vice versa. They give someone 48 hours and the person hangs on for weeks.

Mabel is with us and it is so nice to have her help with everything and, more importantly, for her to be able to spend time with Joshua. She is scheduled to be here until May 17, although depending on how Joshua is doing by the end of the week, she may extend her stay. She is holding up as best as one might expect given the circumstances. I am enjoying her company - one of the benefits of going through something like this is the opportunity to spend time with people I normally don't see very often.

We've been lucky to find a wonderful guesthouse for her to stay at, the Family Link. The place was established in the mid-80's for family and friends coming to San Francisco to care for and visit sick loved ones (at the time, primarily AIDS patients). It continues to serve families with a guesthouse of six rooms, breakfast provided and a very kind woman running it. It is only about 5 minutes from our apartment and we have two very generous neighbors who have been transporting her back and forth.

So many people ask how I'm doing through this process, and I know the question comes out of love and concern. I find it a very difficult to answer, though, and don't ever mean to brush it aside with vague answers. There is a complexity of emotions, many bubbling beneath the surface: sadness, awe, frustration, joy at seeing the many lives Joshua has touched through the years. What I sometimes find is that I don't have the time to "feel" much of anything about what is going on because I am in the middle of all of it. In the middle of giving medications, coordinating with hospice people, managing visitors and phonecalls, remembering to pet the dog - or to walk the dog or arrange for it, and, most importantly, spending a few quiet moments with Joshua. I know full well that the reality of what Joshua's death means will hit me fully when it is over.

As we are moving into this next stage, I am finding a funny sort of peace. There is a beauty about this process, about being with him right now and watching him. In his limited way of communicating, he still manages to be funny and touching and exasperating. He'll roll his eyes sometimes when I bring yet another medication or when Mabel tells him to listen to his wife. He'll wink at me or squeeze my hand when I tell him I love him. Sometimes he'll say it back, too. He'll ask a visitor how they are, ever the good host.

I am learning to expect anything from each day that comes, even if that anything is more of the same. The one thing I hope for above all else is for Joshua to continue to be at peace and comfortable.