Author: admin

Remember Colin’s bench in Texas? My cousin and her husband weren’t content to stop there, as you’ll see from the picture. As near as I can tell, they’ve gone and made a regular Disneyland, Texas theme park, though I suspect this one feels more true to its roots than anything you’re likely to find at Euro Disney.

To quote my cousin: “Note Colin’s name in royal blue on the roof’s edge…made with a 3D printer to look like LEGO blocks. … I also took a pic so that you could see Colin’s bench from his grandparent’s graves.”

There’s also apparently a Lego play area and, as you can see, shade, which should never be underestimated in Texas.

Heaven knows when we’ll get to Texas. We couldn’t really make any travel plans for the Easter break before Covid-19 struck. There’s not a lot of reason to believe that a summer vacation is in the cards (and Texas in July would probably end me). We’ll have to see what the autumn break holds. But I look forward to seeing it some day.

The unavoidable truth of a blog like this is that it’s mostly going to be exercises in either depression or avoiding depression. But I also think it’s important to make clear that the four of us don’t sit around the house moping and being sad. Yes, there are certainly moment – even long stretches – like that, but we also have plenty of moments where we watch dumb movies, experiment with exciting cake-baking strategies and try to teach the children poker. All in all, we do pretty well.

Also doing well is this little apple tree. It was a gift from Colin’s old day care. The administrator brought it over a couple of weeks after the funeral. Due to a combination of disorganization and my general laziness when it comes to yard work, we probably got it into the ground about two weeks later in the year than the average gardener would recommend. However, it was a mild winter and the little guy is now blooming like crazy, which is nice. I’d much rather have Colin, but there’s a small solace in having this apple tree growing up sheltered by our shed, giving us the hope we’ll be able to move it to a more prominent part of the yard once it can better fend for itself.

Today’s the last day of my 2019 vacation, so I’ll go back to working from home tomorrow, hopefully discovering soon what the plan forward it. I don’t know if it was the best use of my vacation time, but I went through everything in our attic and then I went through and organized all of our baby and young children’s toys. That was not fun work. There were a lot of memories. At the same time, the toys aren’t lying all over the house, waiting to surprise me with an unexpected memory, as happens every time an old Lightning McQueen rattles out of the woodwork. I know my children: There will be more toys surprising us. But at least I’ve gotten some control of the bulk of the situation.

I had planned to blog in the days leading up to Easter, but the combination of allergies, a mania for tidying my attic, the arrival of a large load of comic books and sudden access to all the Marvel superhero movies on Disney+ has left me focused on things other than my writing. That said, I’m making amazing progress through the Marvel movies and it’s possible I have the tidiest attic in Germany.

It’s something, I guess, but still not what I really want.

I’ve been dreading the arrival of Easter for a while. My family certainly had an Easter celebration when I was a child. I remember enjoying Easter. But then my brothers moved out of the house and I got older and we weren’t that religious and, honestly, from my mid-teens until I had children in my 30s, Easters would come and go and I would have no idea that it was the Easter season at all or that I had missed it.

That, of course, changed when the kids showed up. But it was still always a distant second place to Christmas in my mind. And then, in 2016, we had to send Emma and Noah away to their grandparents because of Colin’s initial cancer diagnosis, meaning Christina, Colin and I had our Easter in the hospital. Last year we had it at home during those two short months between rehab and the hospice, but it was a stressful affair, like everything else back then. I was trying to keep count as April started, but I can’t do it from my memory any more. All I know is that, two weeks into April 2019, we had probably seen about five nurses quit on us. I know we were without a nurse during the day on Easter Sunday and I know that I ended up eating Easter dinner with Emin, the nurse, late Sunday because there had been no way to keep Colin distracted while everyone else had dinner without me being upstairs with him. I know we still had hope last year at Easter, but it was so exhausting.

And now we’ve got this Easter, in the middle of a lockdown that shows no signs of ending. And, so long as I’ve got comic book-based movies to download, I’ll be fine, but it’s just another strike against the day in my book. Because, no matter what, Easter is know forever bound up with Colin and cancer for me. But it’s even worse than that. I hate that part of our Easter tradition will now be going to his grave and I hate the fact that my children, who literally watched their brother die a half year ago, are now having to spend their time worrying about this coronavirus. They don’t act scared. Maybe they’re not consciously scared. But they ask questions about my cholesterol and my pulmonary embolism and I can’t help but think they’re trying to figure out if I have a pre-existing condition and how vulnerable i am. Noah said last night that he hopes the lockdown doesn’t stop him from getting the second shot for his HPV vaccination because he doesn’t “want to die from cancer.”

It’s too much to take in sometimes, what these kids have to work through. So, we had as nice an Easter as we could have. But I’m afraid it’s never going to genuinely be a nice holiday for me.

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?