Last night, as I was going to sleep, I was recalling Andrea and Mike's wedding, on August 2nd, two weeks to the day before Katie passed away. Katie had known that she was going to die for about 2 weeks, at that point (but no one knew when it would happen). She needed a lot of pain medicine to be comfortable, but she could still walk a bit. She stayed in her room upstairs most of the time, but on this day, she had to come down, get in the car, ride out to Chuck and Cheri's house (about a 20 minute drive), go upstairs there, change clothes, come downstairs, walk in the wedding procession, go back upstairs to rest (her choice), go back down the stairs, go home in the car, and go back upstairs to her room.
During the course of those activities, I believe that we gave her 6 extra doses of morphine to keep her comfortable, over and above the scheduled anti-inflammatory, anti-nerve-pain and other drugs that she needed around the clock.
But she got to be the MAID OF HONOR that day, which was one of her life's dreams.
She got to wear the gorgeous brown, matte-satin, strapless dress with the ribbon sash, the beautiful brown satin sandals from Zappos, and makeup.
and hold Andrea's bouquet during the ceremony.
Katie posed for hundreds of photographs, which are now treasures to us. It was really a magical day.
But I was recalling the day a week later, when she tried to get out of bed, and her legs buckled under her. I was in her room with her, waiting to help her when she got up, really just waiting for her to decide when she was ready. For a moment, I looked away, which I think is what she wanted; she wanted her independence, but she needed help. She tried to stand by herself, and as she put her weight on her legs, she fell right to the floor.
It was horrible. She was in pain from the fall, and I felt terrible, negligent, awful. I wasn't neglecting her, but any pain that she experienced felt like a failure to protect her on my part. It was one of my fiercest desires: NO MORE PAIN for her. She was on pain medicine around the clock, but as the disease progressed, she needed more medicine to do anything other than lie down. And then, suddenly, she couldn't use her legs anymore. It happened just like that.
It was heart-breaking to watch her try to move her legs with her hands, to position them as she wanted them. I wanted to help, to do it all for her, to take the pain and frustration away, but she was a "tween" who wanted to do things for herself. She didn't want to be babied. She wanted freedom and control, as we all do. So I had to walk a fine line between being ready to help, and letting her try (and even letting her see what she couldn't do). But the day she fell to the floor as I waited to help her get up was a really bad day, and it is a bad memory.
After losing the use of her legs, I thought that she became quite disgusted with the way she was living. She only lived one week after that. We felt that she had sort of "had it" with the way the cancer was causing her life circumstances to dwindle. She was still able to watch TV, movies, visit with people, etc., but was very sleepy and pretty snappy with her dark humor then. She really didn't want to see most anyone outside of the three of us, with very few exceptions.
I have to say, though, that she did & said some of the funniest things, ever, at that time. When Katie couldn't get around on her own anymore, we bought a portable intercom, so that we could hear her voice anywhere, and listen for her in the night, while still giving her a measure of privacy and autonomy in the sanctuary of her room. One evening, Andrea and Mike were over visiting us; Mike was with Katie in her room, and Andrea was with us in the kitchen. Katie decided that she wanted a cool washcloth for her forehead; Mike offered to go and get it for her. She said to him, "No; you're a guest. Watch this," she told Mike, and then yelled into the intercom, "MOM!" I came sprinting up the stairs, and she told me her request. I went to get the cool washcloth for her. Mike said that she was very pleased with herself. We have laughed about that many times: Watch this! Watch me make her dance on the head of a pin!, as Maribeth put it. The simple pleasures of "tween" life, when there are so few pleasures left.
Just look at her expression in this photo, as we arrive at Chuck and Cheri's house for the wedding. I can tell she is probably telling me to stop offering to help her carry her things.
What a gal.