Overall, I would give this past weekend 3 stars out of 5...pretty average...no big events (except for the command presence of principals at the first ever Battle of the Bands at the stadium on Saturday night when the temperature was unseasonably cold and windy)...no huge stressors...just rather ordinary. Shelley and Andrew decided to spend Saturday night and Sunday at Andrew's parents in Weatherford, so we had doggie duty. Bailey, the sweetest dog in the world, is pretty low maintenance and never has accidents in the house, so we go by the kids' apartment to take her out around 8:30 on Saturday night, leave her with food and water, and then we show up around 9:30 to the next morning to take her out. That's a really long time for her to be without a potty break, but she's a champ. Other than doggie duty, the weekend was calm. One event did stand out this weekend, and as small as it is, it's implications are larger.
I notice subtle changes in Billy's behavior, and how he handles things that have been routine for most of his life. We go to church on Saturday evening, and because Billy worries so much about being on time, we usually arrive early. There is a man in charge of finding other men to serve communion for each section of the auditorium during this service, and since we are often early, he frequently asks Billy, and as much as I hope Billy was say no, he rarely turns him down. My stomach knots up each time, and I know I will need to remind him when the time comes. I know it's a small thing, but serving communion really does require some attention to detail that Billy lacks. One of the details is that the servers for every section begin at the front of that section and work their way to the back. Unless you are paired with Billy, who often forgets that. The other guy heads to the front of the section, and Billy starts at the back. This creates confusion at the end of each row because no one is there to pick up the tray and take it to the next row. The "other guy" usually picks up that slack, and they meet in the middle.
Last night, I knew we had to leave the service early, so when the man who finds the servers came to ask Billy, I reminded him we had to leave early. He turned down the request, and I felt a big relief. We ended up staying for the entire communion which is followed by a collection of the contribution. Communion went well, and at the beginning of that Billy had pulled out some cash from his wallet. He held on to it, so he would be ready for the collection plate which was being passed around by a young teen. Since Billy sat at the end of the pew, the young man tried to hand the plate to Billy who started motioning that we didn't need it and pointing to the other end of the aisle. I was reaching for the plate, so the young man was really confused, and Billy was insisting he take away the plate. I finally told Billy to take the plate which he did, and then I had to tell him to put the money into it. As soon as he put the money in, he had a moment of realizing what he had done, and he was embarrassed about it. He apologized to me several times, and I tried to act as though it was no big deal. But it was really a very big deal - something he has done for most of his life (placing money in the collection plate) confused him for a moment.
As this disease progresses, the brain is affected in different areas, and while we first noticed a change in short term memory, we now see it attacking long term memory, routines that have been in place for decades, muscle memory, and eventually it will attack every last bit of function in his body. It will take many years for that to happen, and I don't want it to speed up, but it makes for a very long goodbye. That's why it's so important to appreciate every thing we have today. I often complain (sometimes just in my head) about Billy's constant questions to me, but a day will come when Billy can't use language to communicate. He shadows me most of the time we are together, and I mean he follows me from room to room. I lock the door when I go to the restroom, so I can have a few minutes of privacy. Otherwise, he comes in to ask questions. But the time will come when he cannot follow me, and he won't be able to walk. I was sharing with a counselor recently that his balance has not been affected that I notice, and she said, "It will happen. He won't be able to handle the stairs at some point."
Living in the present has become my way of life. Even though I must plan for the future, I can't dwell on all the things that will happen. God does not let go of me. The first time I heard the song Oh, No, You Never Let Go by Matt Redman, was just after my brother had died, and it hit home. Through all the highs and lows, God is steadfast. He never lets go of me, and he never lets go of Billy.
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