18 Months
Work Ethics (or A Necessary Mess)

Do you ever feel that you can physically feel yourself making space for a new, potentially life-changing concept or possibility? It’s a mental thing, but I can almost feel my chest expanding, trying to fathom this new idea that is not yet attached to a trustworthy emotion. This happens quite often lately but this weekend, I took in a little more than I could process in a short amount of time…two different things, going two different directions.  So I’ll bring them to this table here, hoping to look at them outside of myself again…and get my headspace back to normal.

At the dialysis center on Friday, I stopped the elusive nephrologist as he was making the rounds. I told him about the fact that Vernon’s roommate had offered his own kidney.

This is a photo of Dr. Bob that had just been given to him by a patient. I can only assume it was taken on Halloween Friday, when everyone was encouraged to dress in costume. (Vernon didn’t comply.)

Anyway, Dr. Bob responded by lighting up and saying to Vernon with his big loud voice: “You have someone who wants to give you a kidney, eh? That is the gift of LIFE.”

“But what do we do?” I asked. “How do can we find out if this is even possible?”

The doctor was already ahead of me. “Is he on the registry? Which hospital do you want? UC Irvine does transplants….that’s not too far for you, is it? I’ll have my office assistant call and make an appointment.”

“But don’t we have to find out if the potential donor is a match?”

“Before anything, we need to find out if Vernon is a candidate to receive a transplant. I’ll call my office and have them make an appointment to start his evaluation.”

Before I could ask more about that, he had turned and was calling his assistant.

So I guess that path has actually begun. This was the first of the potentially life-changing possibilities that got into my head. It wasn’t the idea so much as the momentum. This could actually start happening! But then…as in all these things. It may come to nothing. Dare I even hope?

I’ve continued reading “The Magician’s Nephew” to Vernon this week, which he loves. I’d forgotten how well written that story was. At this rate, we will go through the entire Narnia series. It keeps him captivated and lately, pretty still. This particular passage jumped out at me after our interaction with the nephrologist:

“At that rate there might be a real Land of Youth somewhere. There might be almost anything. There might be fruit in some other world that would really cure his mother! And oh, oh – Well, you know how it feels if you begin hoping for something that you want desperately badly; you almost fight against the hope because it is too good to be true; you’ve been disappointed so often before. That was how Digory felt. But it was no good trying to throttle this hope. It might really, really, it just might be true. So many odd things had happened already.”

The next morning, Saturday, I was on my way to sit with Vernon at dialysis again, when my phone rang with Mesa Verde’s number. On the other line was a woman, who introduced herself as Jennifer, a new Social Worker who would be working weekends. The administration has been getting an overhaul lately and there are a suddenly people working the offices on the weekends. At first, I was happy to hear we finally had a social worker who was active on the case and I volunteered information about Vernon and his progress/problems.

But then she said: “Ok. What are your goals for his discharge. ”

“Excuse me?”

“I’m here to help you come up with a plan for him to leave.”

“But the last time we had a care plan meeting, I was told Vernon couldn’t leave on account of his feeding tube (among other things.) That we still qualify for the benefit of his staying at a skilled nursing facility.”

“I don’t know who you talked to.”

“The people that WORK there and know his story.”

I thought it was weird that she  didn’t know of whom I was speaking about, and it has come out since that she has been recently brought in by “Corporate” to start getting rid of patients and freeing up rooms. Apparently everyone is a little nervous at the moment.

“Well,” she continued. “He’ll need to leave soon. If you can’t look after him at home, perhaps you can hire a nurse when you can’t be there. There are probably some benefits available for you there.”

“Well, you should know that we’ve just started the process of his roommate potentially donating his kidney to Vernon, so I’m not in a rush to separate them, obviously.”

I couldn’t believe what she said next. “Well, they can always keep in touch.”

Rather than further arguing why I wasn’t equipped to look after him at home in his current state, while raising two children—or explaining that I don’t have a regular income to afford a private home or nurse for him (nor has there been any settlement by the driver of the truck)—I only said: “We can talk about it later.”

I hung up, very confused about the change in information…and direction. From her energy over the phone, it sounded like she was ready to move him out before the year’s end. But then, I know these things have never happened overnight for us…so I take comfort in that.

So again, I was suddenly filled with this new potentially life-changing concept. What to do with it? How to feel? How should I plan? Do I plan? Is this nothing, is it everything? Can we take Joe with us?

They seem to be two opposing trajectories. Which one will be our life? Neither? It doesn’t seem like they could both work out at the same time. So here I am, just processing the things I know were put into motion by the nephrologist and the social worker the very same weekend. Time will tell. In the meantime, I’m trying to live with this awareness without feeling totally confused. And again, I wonder if I have any control in our lives at all.





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18 Months
Work Ethics (or A Necessary Mess)