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I recently had to start using Caringbridge again, because a friend has ended up in the hospital under pretty miserable circumstances that are not mine to tell here. Just take a rough medical situation, which is not Covid-19, and then multiply it by being in a hospital amid the coronacrisis and, there you go: medical nightmare.

There was, of course, the moment of “Thank God I hadn’t gotten rid of this” when I fired up the Caringbridge app for the first time in months, even though it’s now been relegated to page 3 of my smartphone apps.

But then there was this moment of “Exactly why is it still here?”

And the simple answer is that I’m just not ready to give it up yet. I don’t use it. I don’t need it. I could easily track my friend’s status using my laptop. I’d actually prefer to use the laptop for that. And yet, this app meant so much to me for so long. Every time I looked at it for all those months there was a new heart. I couldn’t tell with the smartphone app who had left the heart (it only worked on the laptop for some reason), but just knowing there was another heart or a comment (those I could read on the phone), was so huge.

I don’t know if I’m ever going to get rid of the app. It would feel like abandoning someone who helped me through a pretty rough storm. So, there it lingers.

It’s not the only thing. I was talking to the friend last night and commenting on how Colin’s play kitchen and workshop remain here in our living room. There is a part of me that really wants those upstairs, if not all the way in the attic. And yet … I can’t muster the energy to pick them up and move them to a different part of the house. Same goes for all his toys strewn throughout the house. Yes, we’ve put them in tidy stacks, but even as I’m facing three weeks of essential house arrest due to the virus and the fact that I finally have to burn off my unused 2019 vacation – and I have plans to clean things up – I foresee that I’ll find ways to do something – anything – that doesn’t involve even starting to think about what should stay and what should go and what should get backed up in the attic and what should be left out for memory’s sake. And by doing that I just leave all the memories out and about (and on my phone) for us all to trip over.

But I guess I’m not ready to not be tripping all the time just yet.

We took our weekly run to the cemetery on Saturday, as I had to work on Sunday. As if things weren’t already depressing enough in the world, we ran into this sign.

For those who can’t read German, first of all, it doesn’t cheer me up nearly as much as his old sign about the wild boards

Second (and an actual proper translation) it alerts people to the fact that, due to coronavirus restrictions, funerals can be attended by no more than 10 people these days, and they all have to be close relatives.

It makes sense, given everything that’s going on. But it doesn’t mean that it doesn’t make an experience that’s already as depressing as hell that much worse.

Tonight is going to be the first time since October that I haven’t headed up to the hospice for an end-of-month Friday night session with the other bereaved Dads. The current coronavirus guidelines disallowing any meeting of more than two people would already make it impossible. On top of that, the hospice building is locked down for the obvious reason that any patients there are likely to be more at-risk than the population in general to this new illness.

I have mixed feelings about not meeting up with the group. I say “first time since October,” but that’s hardly a long-time tradition. We’re talking about a group I’ve met half a dozen times … and it’s never the same group of guys twice. On the one hand, I enjoy the sessions. On the other hand, there is a part of me that resists the group. Even though I know they must be as miserable as I am, there is a part of me that wants to be more miserable, that wants the world to recognize that, yeah, these guys are sad, but the real sadness is mine.

Which is nonsense, of course, but it’s there.

I get along with some of the guys. Some I still have friction with. Some … I have no idea what they’re saying. Some I wish would just shut up sometimes. Others I feel have things to tell me. Whatever, we’ll meet up again someday.

More than the group, I miss the annual trek up there to see his Superman stone. I had a shock in January because the stone was not where I had set it. Turns out it just got shifted when they cleaned the pond and I put it back in place last month. But the rock means something to me. I still have my problems with the gravesite. I have no resonance there. It’s Christina’s gardening project in some parts of my mind. Whereas at the pond … I made that stone. I sat there with my son. I spent three months of my life in a lockdown that is, honestly, making the current situation seem like a breeze.

So, I miss that.

I also miss the walk up to the hospice. It’s not a particularly great part of town, or a particularly bad one. It’s just a neighborhood. But there’s this familiar moment of walking up towards it and looking up to his old room – it’s the one on the top left, framed by the trees – to see if the lights are on, which means someone else is staying there right now. I can’t tell you why I enjoy remembering this site where one of the worst things in the world happened to me, but there we are.

Christina asked me as much a few weeks ago. “I don’t understand how you can go there regularly,” she said, after she’d spent part of a weekend there, getting the kids to a siblings’ program and back. And it makes sense. One guy in the group lost his son 15 years ago and his wife hasn’t set foot in the hospice since. There’s no way to escape that there are a lot of bad memories there.

But if you squint, you can look at it differently. Just about every time I go there I run into a nurse or an administrator or someone who spent a little time with me while I was there. Someone who made a meal for me. Or someone who cleaned up after my kids. Or someone who sat with Colin for a few minutes so I could go to the bathroom. Or a nurse who did everything he or she could to keep this poor child somewhat comfortable even when everyone in the room but him knew he was dying. And it’s depressing as hell. But it also reminds me that there are people in the world who go that extra length to make the world a little better. Who are willing to try to help out even when you just know there’s no happy ending coming. And it gives me a little hope – especially when I read about what medical staff the world over are going through right now – to know that there are these people out there. And that makes it good to see that building standing, even if I see the light on in his room and have to wonder if that means some other little boy or girl is dying up in that room right now. In the end, it’s better having that building there than not having it.

So, here’s hoping I can go back in April or May.

We made it out to the cemetery yesterday, which felt like a small victory, especially since, as we left, the news had leaked that Germany had banned gatherings of more than two people, but the rule had not officially been announced yet. It wouldn’t have affected us anyways, as families are still allowed to head out, but it still felt like we were getting away with something.

In other exciting outings, I had to make a run to the office to pick up a new monitor for myself (the picture here shows my ridiculous setup from last week, in which I had our old TV hooked up to my work laptop: Of course, now that I have the new monitor, I find it shimmers oddly. Also, I dropped my mouse and the right-click seems to be permanently on), as well as laptops and monitors to deliver to colleagues all across Berlin.

I won’t lie, it was exciting to be out and about, after 10 days of not leaving Karlshorst. The streets weren’t deserted. You could pretend it was a Sunday. Except I was driving to my colleagues’ homes and handing them hardware, feeling like I was in some nerdy version of “Breaking Bad.” I had six stops, and with each of them there was the excitement of seeing a familiar face, counterbalanced by a little sadness as, without speaking, we both made sure we kept a metre or so between ourselves at all times.

I also hadn’t realized how close one colleague lives to the hospital. I really hadn’t been ready to drive so close to that. Especially while listening to my new Nathaniel Rateliff CD, specifically the song “You Worry Me,” with the lyrics “You seem tired today/Were you up all night afraid of what the future might bring?” What a statement for our age, eh?

We remain well. As of this evening, it’s been two weeks since I’ve been in any larger groups, so there’s a bit of a sense of relief with that. But it’s only been a week since the kids were at school and Christina was in the office all last week, so it’s not like Casa Sorrells is in the clear. And it’s getting closer. A good family friend is now among the coronavirus infected. It doesn’t affect us directly, as it’s been weeks since we saw him. And his main symptom seems to be “feeling a little dehyrdrated,” so maybe he’ll be one of the lucky ones. But it still feels like it’s hitting close.

Because everyone in my company is working from home, they’ve set up this channel on our messaging system where, it seems, primarily people are sharing pictures of their cats lying on their computers. Participation doesn’t seem mandatory and I think that’s a good thing. I doubt I could be too cheery. Because, when it comes down to it, people ask me how I’m coping and the only answer I have is that I just spent about half a year under some form of house arrest, either here or at the hospice. I spent most of my time hating being in the room with him and the time I spent outside the room wanting desperately to be back with him.

This time, we all seem to be healthy. This time, I’m not watching my child die while I’m stuck in the house. This time, I’m holding on to a hope that I can keep myself, my wife and my kids sick if we just do this right. In that sense, this seems worlds better than what I was doing a year ago.

But it’s not really. It just feels that way if you can get yourself to think about it the right way. I still can’t do that most of the time.

I had the moment a few days ago. Christina was reading a Twitter feed from a health care worker – she has a ton of them that she follows – about how a home health care team, one very much like the one we had for Colin a year ago, had seen several of its employees infected with the coronavirus, meaning that they can’t leave their homes and they certainly can’t come into contact with their patients. How are they going to run their service? What are the patients going to do without nurses?

And suddenly, before I’d really thought about what I was saying, out came “I’m so glad we’re not doing this with Colin.”

Christina didn’t take it badly. If anything, I’m beating myself up for having said it. Because I’d rather have him alive and if we were trying to take care of a child in need of breathing assistance in the middle of a health care panic and with no available nurses, we’d have found some way to do it.

But I’m still glad we’re not. Because if he were here and if he were sick (I’d take the first, not the second), we’d be living in fear and with no sleep and just out of our minds. By this point, maybe we’d be more comfortable with the machines and maybe it wouldn’t be as big of a deal and maybe we’d have a routine so it wasn’t all that much of a nightmare. But I doubt it. It would have taken last year’s nightmare and upped the volume to a level I can’t even imagine.

So, I don’t know what I feel.

It’s an odd thing. Four years ago tomorrow, we got his first cancer diagnosis. A year ago at this time we were trying to figure out how we were going to get him home and had not yet gotten the second cancer diagnosis. Half a year ago, we knew he was going to die any day now. And now, here we are, wondering who is going to survive this mess. I don’t lose too much sleep about my personal health. But we know enough people who are at risk that it gives us pause.

And, as we go through it, there’s a little reminder of him in every step. Along with checking my temperature almost daily – using the thermometer that accompanied him with every step of the illness – we have the monitor for blood oxygenation, which will give you a clue if you have some kind of breathing problem like pneumonia. We wouldn’t have this around the house if we hadn’t gone through what we did in the last year.

We don’t have much hand sanitizer. Christina threw a huge bottle of it away in the autumn because neither of us could stand to look at it or deal with the memories. Oh, if only we’d known. We still have a small bottle somewhere.

We also have one of his old breathing machines, the one that’s going to be donated to Ghana. Seeing as no one is going anywhere these days, it’s going to take longer than planned to get the machine to Ghana. And I’m fine with that. I’ve begun to treat it like a totem. Like, if one of us gets sick, at least we have a breathing machine. Which is ridiculous. Christina is the only one who halfway knows how to use it, and I doubt she could reset it to work for anyone currently in the household it. And that’s before you ponder whether we even have the tubes or face masks you would need to make it work. But it’s there.

Otherwise, I’m working from home. Today was the last day of school for a while. I imagine it’s only a matter of time before we’re under full lockdown. I wonder, if there’s a lockdown, how are we going to do? One of the main reasons I’ve enjoyed going to work the last few months is that it gets me out of the house and away from the memories of him, for a period of time. We’re about to be locked up in here with all the memories, for better or for worse. And the main thing I wonder: If there is a lockdown, am I allowed to go to my son’s grave?

            A friend asked me this week how much money Colin’s health care had cost.  I had no idea.  Adding up just the home health care costs and the hospice costs and the bills from some of the longer hospital stays, I already had 200,000 euros.  And that’s without counting any of the bills from the countless doctor’s visits or the 500 or so euros each MRI cost and all the prescriptions.  It must have been a small fortune.  Perhaps I’ll count it all up some day if I’m in a place where the number seems important.

            I know that the current political situation in America has left several people allergic to the word “socialism,” and I don’t want to get political, but I’ve said it many times that, even if I’m not glad about any part of the experience of the last four years – it will be four years ago next week since we first got his diagnosis – at least we did it in a social democracy where there was an adequate safety net that let us keep our house and feed ourselves and not give up every vacation day we might have had.  It made a difference.

            But still.  Even if they’re all covered by insurance, the bills get to you.

            My neighbor, the former health minister, said the bills would keep coming for ages.  I kind of hoped he was wrong, but so far that’s not been the case.  Last week we got the latest 15,000-euro whammy.  It was the doctor’s bills from the hospice.  Given that we’d already paid the hospice upwards of 50,000 euros, I’d just kind of assumed that the physician’s care was included in that.  But no, the first 50,000 was all for nursing care and other services at the hospice.

            Now, I don’t mind paying more money (or submitting bills to the insurance company, to be precise), because the doctors provided good care.  I just kind of wish they hadn’t taken nearly half a year after his death to his us with the last bill, so that we got to do this all again.  It means submitting the bill to the insurance, waiting for the money to show up and then requesting a spending limit from the bank so I can pay the bill.  It’s all doable, but it’s all memories I could do without.  And I’m not convinced that we’re done.

            That said, there was a minor victory with the insurance company.  The one company stopped providing detailed statements on reimbursements, unless they rejected the claim.  But, given the amount of bills we had – and the odd way they reimbursed, breaking up some bills into components, lumping others together – I could never be sure which payments compensated me for which bills.  Worse, given the volumes, I was no longer certain we had submitted every bill.  Remember, there was no statement if the claim was accepted.

            So, I pulled together a list of about 24 claims I wasn’t sure had been accepted.  Christina needed to submit them, since the account is in her name and I could tell that Christina wasn’t 100-per-cent convinced this was the best use of everyone’s time.  But submit them we did … and got 1,500 euros back.  So that’s something.

            And we could have stopped there, except the insurer then decided to get a little bitchy and sent us a huge stack of claims addressing all the statements about which I had questions, kind of an “Oh, you want paperwork?  We’ll give you paperwork” move.  Except now I’ve gone through the list again and found another handful of bills about which I still have questions.  Maybe I won’t get another 1,500.  And maybe I’m doing a lot better than I would be doing if this were happening in some other medical systems.  Maybe I just need a better hobby.  But this is what I’ve got for now, and I guess it’s better than being quiet and letting the medical system keep money to which I’m entitled.

So, they broke out the antibacterial hand sanitizer at work this week and my major reaction was “Oh, I know this drill!” It was almost like a little piece of nostalgia, wiping my hands down until they were red and peeled every time I moved from one place to another. It’s what we did at the hospital and at the clinic and at the hospice and pretty much everywhere else we had to take him for treatments through the years. Honestly, I was a little thrown off when I didn’t then have to subsequently put on a medical gown (they never made us wear face masks that much, so that’s unknown territory for us).

I guess I’m going to have to get used to it, because I don’t think this coronavirus scare is going anywhere any time soon.

And it’s a tough one for me. I haven’t blogged about it, but I’ve been thinking this since January since we’ve pretty much had nothing but a steady drumbeat of coronavirus stories since the start of the year. Because the shocking this is: I just don’t care.

And that’s oversimplifying things. I don’t want my wife or children to die. I don’t want to die either, particularly not horribly. But, at the same time, all I can think is that, if the coronavirus is gunning for me and it gets me … I get to see Colin sooner. And if my belief system is a joke and there is no afterlife where I see my loved ones, then I get to stop living this life without him, which isn’t much, but it seems to be one of the few consolation prizes out there for me.

Don’t worry. I’m not about to jump into a vat of corona (either the virus or the beer). I’m practicing safe cough etiquette and washing my hands obsessively. But can I work up a real fear of this virus? On many levels, no. And I’m not sure that’s a good thing.

There is no doubt that I’m writing a post today about something nice. But, because of the way my world works now, I can’t escape the fact that this nice thing is only happening because something awful – Colin’s death – had to happen first. So, I guess that’s my depressing way of saying here’s something good.

Most of my US cousins – and I have a ton; my Dad was the youngest of eight – got together in the last few months and chipped in money so that my cousin Barbara and her cousin Steve could have a stone bench in Colin’s honor installed in a cemetery on their property in Texas.

I realize as I’m typing this that sounds a bit creepy: Barbara and Steve do not live in a suburban subdevelopment with a cemetery where someone else might have a pool. They live on a decent chunk of land outside San Antonio that was handed down through her father’s side (we’re related on her mother’s side) from one of the first settlers in the region. And this property came with a family cemetery that is recognized by the state and is, if I’m not incorrect, always required to be accessible for people with relatives buried there (correct me if I’m wrong, Barbara).

So, a lot of her distant relatives are buried there. And, when my Dad died in 1999, it seemed like a good place to bury him. I think he specifically requested it, actually. My Mom is next to him too. And now there’s a bench in Colin’s memory, right next to the grandparents he never met. When the project is done, it will have, and I quote Barbara here: “deer proof landscaping, 4 cedar posts with a roof frame and metal roof, and adding a small place where children who visit the cemetery can play with LEGO blocks, Disney cars, and Curious George in memory of Colin.”

I must say, aside from the gesture, which is deeply touching, I do love the fact that the landscaping has to be deer proofed. His cemetery in Berlin has a gate to protect the sites from boars. In Texas, his bench needs protection from deer. The boy has a thing with wildlife in the hereafter.

I haven’t thanked Barbara yet (the email is coming, I swear, I’m just a mess with email these days), but it is nice to know there is a memory of him now in his other home country, even if he never once set foot there. We have already been toying with the idea of coming out to Texas some day. This makes it all the more likely.

But beyond the gesture, it makes me happy on a level that still surprises me. Ever since it became clear he would die, I’ve been mad that he will be forgotten. Now it’s true, most of us will be forgotten. But you hope you’ll carry on in some small way. Maybe your great-great-great-grandchild will cook chili the way he or she does because you learned this from your Dad and you taught your children and maybe this one small thing will carry on. My children will remember me while they’re still alive. Maybe there’s even some young reporter out there whom I taught how to use a semicolon and they’ll keep doing that right for years after I’m gone. It shouldn’t matter, and yet it does.

And I worry that no one will remember Colin. And I know, of all the things I had to worry about, this is sort of an odd one. But it bugged me. And a bench in Texas isn’t going to change that, but it makes the situation a little less awful. And for that, I’m grateful.

If you’re ever in Texas, let me know and I’ll give you directions to the cemetery. I hope as many of us as possible get a chance to sit on the bench and enjoy it. Maybe, if Colin has his way, you’ll even get to chase a deer away from the landscaping.