With all the world-shaking tragedies in Paris over the weekend, it felt wrong to sit down and journal our little life here without taking pause. I wrote a lot of words last night, hoping to process some thoughts. But they just ended up as words, nothing helpful except for perhaps organizing some emotions for myself, so I’ve erased them this morning. Our little story seems so small in the light of these big terrible things happening…and yet our life goes on. I will say that my heart goes out to those who have been affected by the attacks in Paris. I can only imagine the terror of anyone who was there or nearby. There is one way that I have changed in how I read the news though. Where I used to only notice the number of those killed, I now pay as much attention to then number of those who have been critically injured. Their lives and their families lives will be changed forever too, even if they survive. It’s heartbreaking and angry-making all around.
Yesterday was Maki’s 14th birthday. We celebrated by visiting the circus. Cirque du Soleil, that is….the mind-blowing human circus. It happened to be in town, just a mile or so from Mesa Verde on this very day of all days. We visited Vernon in the morning before attending the matinee performance at the grand chapiteau. It was fantastic, but I won’t go on about it here (though I could!) Mostly I enjoyed Maki enjoying it. A gift that gave back to me 14-fold.
Vernon has slipped back a little this week and is showing signs of edema in his neck and is drooling for the first time that I remember (this has been consistent for several days.) The doctor doesn’t yet know what could be the cause, but its worrisome. Vernon is better than he was a month ago, but not as good as he was last week…so we continue this precarious walk that is still moving upward, if we speak in general terms, but backward if we look at specifics.
Joe managed to get Maki a visa card for $30 that he tried to secretly pull off as a gift from Vernon. He wanted to make sure Maki had got something from his dad and vice versa, just like he had acted on Justine’s birthday in June.
So…we’ve decided to put on a second-annual holiday art-fair fundraiser next month. I’d booked the date in advance, but I hadn’t had space in my head to start organizing it until this weekend. It may be a little crazy to pull something off at such short notice, but I think that’s more or less what we did last year, and it was a great success!
I’ve been making many spall paintings over the past months, encouraging the children to make things too. And I have found about 30 older paintings of all sizes and subjects that I am willing to part with at a low price. So far, though I am just beginning to put the word out, I have a handful of other artisans who are willing to donate some wares. I am not expecting people to donate all of the sales, but a portion if possible.
Here are the details:
Location: San Clemente Art Supply
Friday, December 11, 6-9 pm
Saturday, December 12, 10-5
We plan to have music on both days, as well as yummies, coffee, wine.
If you are an artist who is interested, please let me know. And if you want to help with the setting up or sales, please contact me too!
It’s a busy time of year for many people, but this was such a fun event last year that I want to do it again. Also, I want to make a creative space in the community for Vernon’s story. My wish is that he would be able join us sometime during the event. It’s a dream. But tonight: I paint.
Pulling out silver leaf I haven’t used since UK days, when I bought the stuff off ebay.
“Is Vernon eligible for a kidney transplant?” This is how Joe greeted me yesterday.
“I think so. I’ve been told he should be…down the line. Once and if he is stable enough. But yeah, I think so…maybe.”
“Why can’t I donate?”
“I don’t know, Joe. I guess you have to be a match, but I don’t even know what that means. It involves all sorts of testing, but I haven’t really looked into it yet.”
“Isn’t a kidney just a kidney?”
“I guess its more simple than say…a bone marrow match. But it may be a blood type thing. I don’t really know. Do you want me to look into it?”
“Yeah. We can ask Dr. Dan. He’ll know about our blood types.”
“Ok…but are you serious? Giving a kidney is an awfully big deal…and they don’t always work out even after a transplant.
“Well, you only need one, right?,” said Joe. “Anyway, I’d get to spend some resting time at Hoag, and we both know how much nicer it is there.”
“That’s true. Not to mention how good looking all the nurses are over there.”
“There is that. There is that indeed.”
Like I said to Joe, I really don’t know anything about all this yet. There have been times I’ve considered the idea of Vernon eventually becoming well enough to be have his name on a donor list. But it’s like looking into the far away future: how can I even start planning for that now? I often haven’t had the confidence he will make it through the end of the year, let alone start looking at such pipe dreams as living life without dialysis.
The fact that I have been looking up kidney transplant information all day is not because Vernon is ready for one. He may not make it long enough to even need one. I have no idea. But I do know we are enjoying his newfound ease and clarity. He is communicating better with us…as well as those who have been sitting dialysis with him. (What a HUGE relief that has been…and that they have signed up, possibly expecting the worst!) The fact we are even discussing kidney transplant now mean we have more hope for him. What a privilege that we are even able to start googling it. Isn’t this a sign of progress?
This is not a post to update any real news. Its a post to update a dream. Even if we only have a small window before Vernon reverts again (as seems to be the cycle so far, almost to a science) I love that we are feeling free enough to dream a little. Obviously some space for that has been cracked open. If nothing else, this is a luxurious side-effect of progress. It’s different and its good. And as always, a little scary too.
PS Joe is looking for a bread maker…hoping to draw a crowd to the community room in the mornings with the smell of fresh baked bread. The coffee isn’t enough. If anyone has one they aren’t using anymore, please consider making a nursing home donation.
One year ago, Vernon was moved to Newport Subacute. There had been many attempts to get him into more desirable facilities, but in the end, this is what he got. As Justine learned in Preschool: “You get what you get, and you don’t throw a fit!” I didn’t throw a fit, but I spent the next three months trying to find a better place for him on my own. I still believe it was there that he lost his chance to one day walk. His right knee is permanently bent and both achilles are calcified. But now these things are the least of his problems. We did manage to find a new home for him at Mesa Verde, which we are very happy with…even though he used up his physical therapy benefits by summertime. If it weren’t for Mesa Verde, we would never have met Joe, a king among men, worth more than a thousand working limbs.
It was a year ago, then, that Vernon began outpatient dialysis at Davita, another place I have struggled to work with. We were only going three days a week then, and Vernon was still safe in his chair and didn’t need sitters. The facility is big on seasonal decorations, and I recognize the autumn leaf motif returning to their walls and ceilings a year later.
Though I’m recalling the past, I’m not here to complain. In fact, this reflection brings to light something positive for me. A year ago, I didn’t know enough to say “NO” to anything. I had my preferences, but I felt like we just got pulled into the tide of medical decision-making that often had little to do with our best interest. This still happens, of course, and I have gotten used to hearing “NO” over and over as we ask for more things that I think might help Vernon’s recovery or comfort. That’s the “system” we have in in this country. If you aren’t filthy rich, it takes a lot of creativity and stamina to get what you want in health care.
But something new happened this week: I was the one saying “NO.” It was a simple interaction, but it felt as if I had turned some sort of personal corner. I have to power to say “NO” even in the medical world.
I got a call on Saturday from Fountain Valley Medical Center, informing me that on Monday (yesterday), Vernon would be having a surgery on his left arm to fix the fistula that had been embedded in April. April! How can this be an emergency then? Basically the doctors at the dialysis center talk to each other but not to Vernon’s overseeing doctor or anyone at the Care Home. So even though Vernon has had to have two emergency surgeries in the past month, and though it took him almost a week to recover from the anesthesia from the most recent one (which was very scary), they were happy to put him under yet again to suit their calendar.
I interrupted the woman who was asking me the pre-op questions over the phone. “Can I put this on hold and get back to you after I call my doctor?”
I called Dan. “Is it life-threatening if Vernon doesn’t have this procedure right now?” He hadn’t heard anything about it, but he assured me it wasn’t.
“I just don’t think he can handle another bout of anesthesia so soon. I can’t handle it. We finally got him back for a few days after a scary drop in consciousness. I say “NO, not yet.” Can I do that?”
Dan assured me that I could. And he agreed that this would likely be hard on Vernon’s body and mind, so soon after the other surgeries.
I cancelled the appointment. And I have yet to hear anything from anyone in the nephrology/vascular/dialysis camps. So I guess it wasn’t an emergency, after all.
I do feel angry about this, how that camp sees him as some sort of machine to fix and tweak, not ever looking at the bigger picture. But I won’t throw a fit. I can just say “NO.”
I like the feel of that. It’s our turn to use the word…Lord knows I’ve heard it enough in this journey.
(That said, whenever I do our own thing…I have a niggling fear that I’m killing him. But at least we’ve got him in a good space for the time being. We can book it after Thanksgiving, instead.
On that note, I booked a wheelchair van for Thanksgiving Day. I had originally thought we’d aim for Christmas, but the last year has taught me that you must take advantage of the windows while you have the chance. If all goes well, he and Joe will be home with us for a few hours on Thursday, the 26th.
How is that for a big fat “YES?” It’s about time.
(Vernon, a few years ago. Just found this picture hiding in the archives. Who needs legs or kidneys when you’ve got a face like that?)
Yesterday was the best Mesa Verde- Sunday in a long time, especially for Maki, who hadn’t had a decent conversation with his dad in at least a year. Despite Vernon’s complaints about constant pain in his right leg (our next area of attention?) he sat upright at the table for over an hour, talking with the kids as they drew pictures. Maki and Vernon spoke about superheroes and upcoming films. Maki said these were the kinds of conversations they used to have, whilst walking or driving together. I try, but I’ve never been very good at engaging in the subject for long, so I could see that this particular conversational cup of Maki’s was being filled at last.
When asked, Vernon said his favorite superhero was “the Thing.” Then he requested that Maki draw the character, to which he obliged.
The significance superheroes have for Vernon and Maki’s relationship runs deeper than I can explain. To give a short example though: Vernon got a tattoo of the Spiderman logo when Maki was about four. They were already sharing a connection over comics and cartoons, and Spiderman was their mutual favorite. In Vernon’s mind, the tattoo was a reminder of his connection to Maki, even though they were living in different countries at the time. The nurses happen upon it sometimes when they are tending to him. Joe tells me eyebrows are raised— they obviously want to ask, but aren’t allowed to.
Here are three of my own superheroes. Vernon is practicing his newfound powers: sitting up and the ability to drink milkshakes without coughing.
Bonus video: another visit from the Logies and Isabelle singing one of my favorite songs. She didn’t know, but Vernon spent many hours of his coma listening to Iron and Wine on repeat. In fact, I was so nervous waiting for him at the airport the first time he came to visit that I was listening on repeat as well. I love how Belle’s voice makes it special all over again.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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