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.
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Maki is a wonderful young man, full of compassion and creativity.
He sure is! Thank you for noticing! 🙂
OK….just going to put this out there. Since we’re having our Women’s Creative Event soon, I’m in the “Making Note Card” frame of mind. I would personally LOVE to purchase note cards with Vernon’s art work–I would proudly send them out to friends to show the hope and beauty that ALWAYS lives in a creative mind.
what a fantastic idea, Traci! I should make some for thank you cards too!
I have learned a great deal by observing you, Maki and even Justine. You are all an example of facing reality with amazing courage, hope, creativity and deep love ❤️
Thanks Tanya! AND Thanks to Bob, who fixed my drawer in record time this last week! I’m so grateful for both of you.
Sweet, wonderful Maki! I love his guitar playing. He is getting better! Miss him so much. Lots of love to all four of you. You are all so courageous xx
Allison,
It was so good to see Maki and Justine and Vern doing his job of painting. As someone has said before you are teaching us all a bunch of things. I know it is hard for Maki and Justine but think of how they will have come so far by being around their Dad the last couple of years. You are a rock and I haven’t seen you but can tell from your writing how good you are with whole sitution.
Hugs,
Becky
family time is so important , both Maki and Justine will understand this when they are older ..those memories will be special to them xx great to see Vern painting outside in the sun ..just the therapy he needs .. painting /sun and most of all his family xx
love to hear you play the guitar Maki ..please can we hear some more ?? you and Justine are growing up so quickly ..miss you all so very much xxx
xx love to you all xx
I loved reading this post. Thank you so much for respecting both the need to see their dad and the need to stay away. The way you describe that you are busy with Vernon while you’re there means they can just hang around. It’s ok to be bored some times. It’s great for everyone that Vernon is painting! Lots of love.
Thanks, Synnove. I am often mindful of some of the conversations we’ve had about the importance of both closeness and distance as (especially) Maki is growing up. It may not always seem so, but I often think of what you would approve of, when it comes to Maki. And what Vernon would approve of too, of course! I think you are right… and its a great reminder…that boredom is ok. I can feel the pressure as a Southern California mom to make sure they stay busy or entertained all the time. I feel the injustice that they have to stick around and watch the hard stuff with their dad. But then I think…how much more would that be the case at home, where I’d be caring for him all the time. I think Maki is picking up on this too. He is more willing to help me with the things I ask for help with…I think he’s starting to recognize how much more difficult the daily things are for grown-ups, and this is a good thing, I think! 🙂
You get the balance right, I think. You are right, with Vernon at home it would be something else. Maki is old enough to have thoughts about life as a grown up, so glad he is helping when he can. I miss him. Lots of love x
The painting that really got me for some reason is the one with the house. It almost looks as if it’s on the head of a girl in a skirt. If that girl is you, does he think of you as being his home? Well, just the random idea that popped in. Fascinating pictures.
And yes Maki I Love your playing and would love to hear more! Really cool chord progression.
Live music is so soothing. I’ll be back with my guitar soon. Maybe next weekend ?
Ryder sings Zip a dee do da now with his own lyrics. Instead of “plenty of sunshine” he says “fun-shine”. Makes me think of Sunday’s outside with Vernon, you and the kids. You never know how it’s gonna go, but somehow it ends up being fun.