I have been looking into my memories of this period, last year. Last year at this time, we had lost all hope of a cure for Katie's cancer. There was so much that we did not know. At the same time, we had a lot of work to do to help her with the day-to-day aspects of living until she died. We had no idea how many days, weeks, months or years she had left. We had to follow a schedule of medication (and nutrition) that was outlined for her, around the clock. We had to watch for changing symptoms and respond to them. We had no idea what was going to happen. How would her dying happen? When? What would it be like? I was afraid of what it might look like. I prayed for mercy for her, so that she wouldn't suffer. Then I had to return to deal with the only thing that I could: How was she in this moment? What, if anything, was needed?
As Katie became weaker, she struggled for her independence. She tried to get up when she didn't need to; she tried to walk farther than she comfortably could/should. I admired her tenacity, but it was hard to watch her struggle. I could not dissuade her from attempting these things, but she would call me for help after she found that she couldn't complete the task, and was in pain. I would run and grab the morphine syringe (which we kept pre-loaded at all times), give her a dose, and comfort her until she could move. Then I would help her back to her bed.
As the disease advanced, pain would break through the prescribed underlying dose of medication, and we would need to give her extra doses of morphine. If an episode took three extra doses to curtail the pain, then we would call Hospice and ask Amy to increase Katie's underlying prescription for pain meds.
If an episode took three doses of morphine, it meant that she was screaming in pain. This happened twice, and I will not forget it. Hearing my sweet daughter cry, "I want to die, NOW!" is not a forgettable experience. After the morphine took effect, she would be sleepy, and I would lie with her on her bed until she fell asleep.
In Gratefulness, the Heart of Prayer, David Steindl-Rast says,
"The hope that is left after all your hopes are gone -- that is pure hope, rooted in the heart." What this means to me today is, when my hope is gone -- of getting the outcome, the changes or the picture that I held dear -- what is left is simply being present to do the work that is in front of me, with the most loving intention possible. In accepting the "not knowing," hope becomes, not what I want to have happen, but what I can offer in this moment. Maybe this is what is meant by "God is love, and those who abide in love abide in God, and God abides in them" (I John 4). That may be "the evidence of things not seen"...perhaps being in the Love of God is good evidence that He is Love.
When life is stripped away from you, and you lose something that you thought was vital to your existence, you may also be freed to see things that you were too busy to see before, -- to receive gifts that your hands were too full to receive, when your life was as you wanted it to be. This will not replace what you have lost; I expect that that hole will be there forever. But my experience, so far, shows that we are given what is needed in the moment, even in the moments of not knowing.
To those of you who are praying for us: thank you.