Sundays are especially challenging. So I’m choosing to think of them as important, rather than hard. This is the day of the week that Vernon and the kids can see each other, and its one of the rare days he isn’t in dialysis, so we just hang out in the sunshine. We’ve been busy doing other things as the spring has opened up, and I hadn’t taken the kids with me for a few weeks. It’s only really hard because the kids don’t necessarily want to be there. They get bored easily and don’t want to stay long. They also have both become guarded (each in different ways) about their dad: they don’t want to see him at his worst and they don’t know what they will get. I totally expected this behavior and they rarely complain about going, but before we even arrive, Maki is making his escape plan: “When do you think we’ll be home today?”
But Sundays are important. This is when I can get Vernon out in the sun. The better he’s feeling, the longer he should stay up an out of bed…especially when it is so nice outside. Also, I’m intentionally trying to get him to lay on the PEMF mat more, hoping to alleviate some of his pent energy and physical agitation. So the kids are having to entertain themselves because when I’m looking after Vernon, I can’t look after any once else. It’s not ideal. But its important. And its important that they are a part of it, though they might not prefer it. Eventually/afterward, they’ll be glad they did…and Vernon is certainly glad to see them. I think it reminds him he still has his family, which is where his personal treasure lies. It also reminds the staff that Vernon is actually a young man, though he can seem like a senile geriatric the rest of the time.
Thankfully, he was in a good place when we arrived. He and Joe were up watching TV in the multipurpose room. I’m always happy to see him out of bed. It’s very rare.
Maki took Justine aside with a pack of UNO cards from the game cart. I admire and am grateful for his big-brothering. Vernon wanted to paint. He was on a roll, one after the other. He must have painted for an hour and a half straight, my choosing a different color for him every time he emptied the brush. For the most part, I didn’t know what he was painting or where he got his ideas, but he was in the flow. He didn’t want to stop. But what I noticed most was that over time, he became more relaxed. Of course he demanded water, even trying to drink the colored paint water at one point, but over time. The activity became the therapy, not just for his mind, but his body.
He started by drawing Justine. And then…
Though Maki was ready to leave when the painting was finished, he helped me out by playing music for Vernon while he lay on the mat. I was finally able to tend to give Justine some attention and clean up our mess. I hope through this, he is learning that playing music, even at his early level, is a powerful thing to give away. He can see how much it relaxes and uplifts his dad. He’s seen other musicians do the same thing in the past, but hasn’t felt up to par to bust out the guitar in front of them. We’ve had many friends that are musicians who have been too uncomfortable to play for Vernon. Though they’ve said they want to, they’ve never come. I can understand why: who wants to look at mortality and sickness that close up if you don’t have to? But Maki has an in. He doesn’t have a choice to but overcome his discomfort, and the guitar is a tool that can help him…as it also helps the listener. There is power in his hands…and he is learning to use it for good.