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Intros

One of my doctors is Spanish. Or at least he’s from a Spanish-speaking country. It really doesn’t matter. The point is that his German is iffy.

I had to see him because my leg was acting wonky and, even though I didn’t think I had a blood clot, I wanted to rule it out. The main reason I didn’t think I had a clot (and there wasn’t one) was because I had engaged in no behavior that could have resulted in a clot. Except for a rough-housing incident with Noah about a month ago. Of course, I told the doctor about this.

“My son jumped on my leg,” I said. “Mein Sohn ist auf mein Bein gesprungen” is what I said in German.

Except he heard: “Mein Sohn ist gestorben,” which is German for “My son died.”

And he repeated this at me, which had this perfect dark humor moment of me trying to figure out if my answer was “No” or “Yes” or “Yes, but not that one” or, really, any of the above. I eventually clarified that the son who had jumped on my leg was still alive and glossed over any other talk about dead children, because this was not the time or the place.

But yeah, these moments of having to face Colin’s death keep hitting when you’re least expecting it. I still don’t know how to introduce myself when people ask about my life or if I make contact with a friend who’s been out of my loop for years. I recently listened to a David Sedaris spoken essay in which he discussed meeting a man who introduced himself as the father of a certain number of children – I forget how many – but quickly added on that one of the children had been stillborn. “What do you do with that?” asked Sedaris, who was himself discussing his sister’s suicide.

So, I still don’t want to be the guy laying my troubles at the feet of strangers. But I also don’t want to meet someone and then, five years in, tell them that, by the way, the reason I get weird sometimes is because of the death of my 5-year-old child in 2019. There’s no real good options. A colleague at work who started in March, about two weeks before we were all sent home for lockdown, found out from other colleagues. And there’s a part of me that hates the fact that my loss is a form of office gossip. And there’s a part of me that’s glad I didn’t have to deal with the reveal.

Last week, an acquaintance I hadn’t heard from in a decade emailed out of the blue. Of course she asked how I was. And what do you answer? “Fine” seems like such a lie, but answering “I spontaneously started crying while mowing the lawn last week” is far too much information.

It’s hard because I feel like there are at least two or three versions of myself trying to figure out which is the true Niels. There is still a Niels that, pandemic notwithstanding, still wants to go out for a beer and a concert and genuinely enjoys life. He shows up on Facebook from time to time. But there is also the part that second guesses every decision I make and really wants to find someone to blame – even myself – for what happened to Colin, even if I know that there is, ultimately, no one to blame. There’s also a part of me that doesn’t want to do any of this any more, that thinks those movies where you can brainwash yourself and erase the bad memories doesn’t really seem like such a bad idea. I try to keep that version of me locked away, but he’s never entirely gone.

I had a little epiphany while I was setting up for Halloween this year. Germany is about to go into another lockdown-like situation starting on Monday. Was it really the best idea to set up our haunted house in the carport and send the kids out trick or treating? We’d set up the haunted house so there was no contact between us and visitors and we told the kids to only take candy put out in bowls, not to ring any doorbells. It felt like we were doing this as safely as we could under the situation, but it still felt like we were bending the rules. Like people might walk by and roll their eyes and say “You’re doing a haunted house? Under the circumstances?” And then I realized I’m not doing this for other people. It didn’t matter if not another soul showed up (in the end, people showed up to take selfies with our witch), because I was doing this for us, to make us happy. In the same way, I’m not writing this blog for any of you reading it. I’m writing it for me, because I need to figure out how to shuffle what’s left of me after Colin’s death back into a form that is functional and capable of happiness, while still remembering Colin.

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15

We had our 15th wedding anniversary yesterday. Due to the vagaries of the virus, we kept things pretty small and headed out with the kids to Linum, north of Berlin, to watch cranes on their migration route. And then we had pizza. Given the limitations of the current situation, it seemed like a good idea.

For the fifth and 10th anniversary, we’d gone to Caputh, where we had our church wedding. On the fifth anniversary, Emma and Noah were so young, we didn’t do more than pose for a picture in front of the church and have a look at the restaurant where we had our reception. I seem to remember most of the time spent there running up and down the dock next to the restaurant.

For the 10th anniversary, we went a little bigger. We didn’t get a professional photographer, but had our friend Stephan take a portrait of the now five of us and actually had a meal and overnighted there. And that was nice.

I’m always amazed by the memories that stick with me. On that night in 2015, Colin got up from the table in the middle of the meal to explore the bar area. I wandered over with him and then he turned back to the table at full speed. I didn’t chase, as I figured he’d stop with Christina. Instead, he breezed right past her and towards a set of stone stairs, which he promptly fell down, thunking his head on the way. Of course it was awful and of course it almost ended the night, but he seemed OK after a while.

In 2017, at the family retreat for children who were living with cancer, one of the other Dads told me something. I can’t quite remember his name: He was from Kosovo and his teenage daughter had a tumor. It was such a weird time there, because you didn’t get to know every other family that well and some families you weren’t even sure which child was the sick one. But this guy told me once that he’d heard that any tumor will be the end result of an injury that didn’t heal properly. And, of course, ever since Colin’s death, I’ve kept that conversation in my mind and wondered if, in October 2015, I’d been a little faster none of this would have happened.

I don’t quite believe that’s the case, but you can’t get it out of your head either.

So, here we are, another anniversary behind us. We have agreed, when things calm down, we’ll go back to Caputh and take another family photo. I wasn’t sure we would. Some places I would happily go spark memories of Colin in Christina, so we don’t go there. Christina frequently looks at photos of him, which is a step I can’t quite take. We all have our limits. But apparently we do have it in all of us to get out to Caputh when the situation is right again.

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Photo op

I’ve started thinking about a photo project whereby I would get all the photos and videos of Colin into one place. As all these things do, it’s turning into something bigger than I’d anticipated, so I thought I would reach out to see what expertise there is on photo archiving in this group. If that doesn’t work, I guess I’ll spread my net to my friends on Facebook.

The goal is simple: I want all the pictures and images of him in one place. Maybe I can even get them onto a USB stick (or some other medium) so we could look at them on our TV. However, as I started researching this, it dawned on me that it would be a good idea to archive all of our family photos in one place, as opposed to the multiple laptops and phones across which they’re currently spread.

To be clear, I’m not against cloud archiving, so I’ll take ideas about that as well. But my primary goal is to have an archive (and a backup) I keep here in the house.

Now, my research keeps prodding me towards network-attached storage (NAS) options, which do seem very nice until I realize that setting one up would set me back about 500 euros. That seems like a lot of money to spend just so I can pull up pictures any time from anywhere (as opposed to walking somewhere and plugging a hard drive into my machine). So, I’d appreciate thoughts on that.

The next hurdle is that we are a mixed family – PC and Mac. As such, I am looking for suggestions on the best options to:

  • set up an archive
  • set it up so that the photos can be saved together and accessible from both machines
  • make it so that it can be backed up easily

As a bonus, this setup would:

  • be accessible from anywhere (though a 500-euro price tag would give us some pause)
  • and regularly update every time it was synched with the photo programs on our phones/laptops

And I assume, after all that is done, I would then create a special folder of Colin photos and videos. But if there is a faster way to that goal, I’m all ears. Just remember, I’m pretty technologically ignorant, so I’ll take whatever advice you have, but dumb it down as much as possible.

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Some closure

We didn’t plan the timing at all, but almost a year to the date after Colin’s burial, the gravestone showed up.

It actually came as a bit of a surprise. We knew that the cemetery staff wanted to do some landscaping at the site before they were going to let the stonemason do his work. But we also expected we’d get some warning. Instead, Christina got a call around 8:30 a.m. on Tuesday to let us know that the headstone was in place. So, that’s that.

I haven’t had a chance to see it yet. I had to get downtown to a doctor’s visit for my flu shot. Then Wednesday we had errands to do. And Thursday my flu shot left me lying in bed. And then there’s been rain and the fact that I don’t like going to the grave all that much. But we’ll get there some time in the next few days. And then we’ll at least feel like this part of the nightmare is over (well, the bill still has to come).

It’s been one more step in what I can only call a process of normalization. The one bank finally sorted out his college fund (we split it between Emma and Noah). I realized I’m sleeping through the night without melatonin (then again, we’re on autumn break vacation here, so I’m also having a beer or two almost every night). A few nights ago we had a friend over and, to make space for five at the table, I moved around to the head of the table, which was always Colin’s spot. I don’t know if it had been by design or by lack of need for the space, but no one has sat in that space for the last year. It no longer felt taboo using it.

Of course, it’s not as if we’ve forgotten him. As Christina said a few days ago, we deal with him more as a memory now, not as a child. Both are equally powerful and take the right mindset to process. But it’s what we have. I take solace in the fact that I didn’t make a big deal out of it being one year since his burial. I actually might have forgotten the date, except for an email from a friend and that the one-year anniversary of the attack on the synagogue in Halle just happened, which I knew was just a day or so before his burial. It becomes a little more normal every day. And that, in itself, reminds me of how abnormal things remain.

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In the Backyard

Ricardo and I were taking apart the old sandbox in our yard and Christina asked me how I felt about doing that. And my response was “I’ll probably blog about it,” which is always a good indicator of how things are weighing on me in this universe where I’ve buried a child.

Interestingly, I wasn’t so upset about the actual removal of the sandbox. The kids never played that much in it and, mostly by this point, it’s just in the way. I think I felt more that I should be having sobbing, heaving memories as I take apart yet another childhood memory, partially in the name of having a better lawn. But there you go. The sandbox is gone now and any memories I have of Colin in it are just memories now.

I’d argue he played in it the least of any child. He spend most of 2016 with permanent catheters, which meant a sandbox was off limits. Even when 2017 came and the tubes came out, he was still getting a mild form of chemo, which meant dirty, outside playing wasn’t the smartest idea. And then we had that one year that felt a little normal and then everything fell apart in 2019. If I think about it hard, most of my sandbox memories are of the one back near our apartment in Kreuzberg, where I often took Emma as a toddler.

It’s just another step, I suppose, in rearranging our lives. Maybe it was a good step. Honestly, I was surprised to see that it’s been nearly two weeks since I blogged, but the sandbox removal was part of a larger lawn resuscitation project which has taken up a lot of my time. I’ve also been turning some attention to fiction writing, which might never take me anywhere, but feels a bit like I’m taking control of my corner of the universe again. And now we’re facing two weeks of whatever level of lockdown might come. Case counts are rising in Germany, the government seems unwilling to lay down a complete ban on movement, so we’re all kind of in limbo. But the fact of the matter is that our car seems to be at death’s door and Emma has an edema in a bone in her foot, meaning she can’t really walk. You add it all up, and it seems like a really good argument to stay home for two weeks, trying to make your backyard a little prettier, even if it’s not exactly full of the memories you might wish to have.

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Grave robbers

I wonder at times if we’re setting ourselves up for a repeat of last year, but instead, instead of a long pause between the death and the funeral like last year, now we’re having a long break between the anniversary of the death and the day we have the gravestone set up.

And that’s not to say that was a bad thing. I think there was a lot to say for having the month together as a family of four before we committed ourselves to the funeral ceremony. It wasn’t all fun, but it gave us time to ease into the new situation. Because, in the end, it isn’t a moment in time, it’s a process that’s going to weigh on us forever.

Case in point, I mentioned in the last week that there had been a lot of bracing for September 17, like that was the day I was worried we were all going to fall apart. But nothing really happened that day. It was the week before where I felt things were starting to creak at the seams, where one member of the family after another got sick and it was hard to tell – without accusing anyone of faking illness – whether the ailments were physical or mental. Both are valid, but it’s terra incognita trying to figure out if a child has an actual stomach ailment or if thoughts kicking around in his or her head are causing stomach upset. They are different and each requires a different approach.

Suffice to say, about three days before the anniversary, I thought we would hit that day with most of us unable to roust ourselves out of bed. And then the day came and it was more normal than I could have ever expected.

But now comes the lead up to the gravestone’s arrival, which has its own sense of foreboding. I don’t know if they’re doing it because we wanted it or if they were going to do it anyways, but the staff at the graveyard is doing some landscaping around his grave, trying to level the earth. At the end of the day, their motivation doesn’t matter, it will make it easier to erect a gravestone and tend to the grave. The downside is that all the plants Christina has laid down in the last year are probably going to die in the process.

Knowing that, she and I went back yesterday and pulled out as much as we could. The plan being to plant it in our yard for the time being and then return it to the graveyard when things are settled there. I don’t know much about plants, but it seems to me that we’re going to have a high loss ratio here. Still, it’s worth the try.

But what struck me about the project was the family’s lack of interest in it. I can’t say if Christina wanted to go or not, but she was the force driving us there. I won’t lie: When I woke up yesterday, the forecast was for rain all day and I was pretty happy that it meant we probably couldn’t make it out to the graveyard. And then I was sad when the forecast changed and it meant we could go. But the kids went through a series of excuses about not going until we got to the truth of it: There’s not a lot of interest in going to the grave because, not surprisingly, it’s a bad memory.

And then you’re left wondering as a parent, am I doing my job better if I protect them from the bad memories or if I force them to deal with the memories now, rather than letting them accumulate for the next decade or so? I have no idea. The hospice has a grief therapy group for kids, separate from their climbing group, and we’re talking more not about how we have to get Emma and Noah signed up.

But then I look at that and wonder what I’m doing myself. My therapist says I should look into trying things on my own. Several friends make valid points that maybe that’s not the best idea. I don’t know. I’m not going to my men’s group because I’m too nervous about the coronavirus. That said, I went through my phone and cleared out a ton of photos (they’re all backed up on the laptop) so I could have a little more space there. Deleting photos of Colin is hard, even if I know I still have them as a backup. Let me amend that. Deleting good photos of Colin was hard. Deleting photos from our 2016 stay in the hospital actually felt kind of good.

So, here we are. A garden full of plants that we airlifted out of the graveyard, a gravestone on the way, everyone attending work and school and still no idea how we do this for the long haul. It feels like grief in a nutshell.

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Mental break

I did something yesterday I haven’t done since returning to work. I refused a story.

I’d warned people this might happen. I’d asked colleagues to try to shield me from having to edit stories about dead children or cancer. But I work in a news wire and when you’re in the job where it’s your job to pass out stories to other editors, you often want to keep the plates spinning, so you shovel them onwards without looking at them.

And that’s how I found myself looking at a story about the Vatican threatening to refuse last rites to people who attempt euthanasia. And I can’t even speak to much about what the article said and what the Vatican’s arguments were. I got hung up on “death” and “last rites” and pretty quickly found myself down an ugly rabbit hole of Colin’s last moments and whether we’d had last rites for him and whether it matters if we did, etc. etc. It’s not as if I shut down. If anything, it’s more like my mind went at warp speed for a few moments there going through those final days a year ago. I didn’t even get too upset, because I quickly remembered that he hadn’t even had his first communion yet, so, by my theology, his baptism is enough to get him to heaven. And I don’t even know why I let myself get wound up by this because, even though I belong to the church, I don’t get so caught up in the rituals like some of the more dogmatic Catholics might. I believe he’s in heaven whether or not someone smeared oil on his forehead.

But it still tied me up. And there was no way I was going to edit THAT story. I’d already had a few annoying experiences that day, so there was no need to add to the misery.

The point, however, is not that editing for a news service can carry hidden anxiety triggers, it’s that it’s the kind of thing that brings me back to my question of what do I do after my therapy sessions run out. Do I just push on with moments like these, because there will always be moments like these? Do I look for some way to get better? Am I actually even sick? Being sad and upset seems like the only rational way to approach the situation.

I did meet my therapist last week. We have more sessions left than I had been led to believe, but only a handful. We’re going to stretch them out. Maybe I won’t have my last session until January. But he’s being pretty stern. Even if we could convince the insurance company to let me keep going (a big if), is it fair for me to keep going. I freely admit, I don’t particularly expect him to fix me. I mostly go because I enjoy speaking to him and, as my friend Liisa puts it: “It’s useful to have a person to talk to who isn’t affected by any of your decisions and who doesn’t want anything from you except your money.”

But that’s not really therapy. Dr. Kehrer pointed out that, first of all, if we hang on to one another because we like speaking to one another, that’s blocking up therapist time that someone in dire straits could be using. More pertinent to me, he asks if keeping me in therapy is the best thing for me. I’ve been through hell, but I still want to be part of society. Going to therapy is not going to help me do that. Being part of society will help me.

Which all seems to make sense, but then I think about how it’s such a strain to try to be around people and simultaneously not bum everyone out. Last night I went walking with my friend Markus – who knows all about Colin and has listened to me moan more than once – but also his friend Piet, who doesn’t really know much about it. I’m not going to unload on Piet because I barely know him and I don’t want to bum him out.

At work, he use Slack to communicate. Every day we start a chat group with the editors on duty. We ask for advice. We tell dumb little stories from home. We keep each other briefed on the work flow. Sometimes we even get stuff done. Last week, when Alexei Navalny, the Russian dissident in a Berlin hospital after a poisoning, got taken off of ventilation, there was a debate about the appropriate wording. One editor noted that, if Navalny was up and walking, he must be off the breathing machine. “It would depend on the situation,” I pointed out. And just like that, the conversation thread went dead. Understandably, nobody really wants to be talking about breathing machines with me. I don’t want to be speaking about breathing machines. And then I want to ask Dr. Kehrer: Are you sure this is going to work?

But therapy is difficult. I asked Mrs. Sim, the therapist from the hospital if she has any ideas. She’s also not convinced I need therapy. But she only has five days to help me, because they’re phasing her job away at the hospital. Someone decided they didn’t need a staff psychologist who focuses on the families of the affected. I asked her how the remaining therapist would handle the workload. She said that conversations with families in the pediatric oncology ward would only be limited to real crisis situations from here on out. Like every conversation in the pediatric oncology ward isn’t a crisis conversation. Like people call up the therapists because they want to discuss the pattern of their dying child’s pyjamas.

I don’t know what I’m going to do. And I don’t mean that in the sense of “Life is so hopeless.” I mean it in the sense that I’ve got to figure this one out. It doesn’t help that trying to find a new therapist/paid friend to moan about life with is going to be a challenge during a pandemic. For the time being I’ve given up on going to my men’s group at the hospice because I can tell my worries about contagion would distract me from anything anyone might say. Not the best time to meet up with a stranger over coffee, is it?

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The last dumb bill?

I feel I’m going to let people down – not feel, not fear – but nothing really happened on the anniversary of Colin’s death. We got the kids to school, Christina went grocery shopping, I think I did laundry and then we all gathered back at home to make new Superman candles to remember him by and then went to the grave.

In terms of drama feared, it didn’t even register on the Richter scale. I still have other thoughts about it that I’m working to process. I might share them at some other point.

For now, there was one other thing that happened. It’s been months since we got the last medical bill for him, so we can cautiously hope that we’re done with that nightmare. As for all the other bills, after months of obsessively going through them all to make sure we received insurance compensation, I was down to one bill which I couldn’t figure out. Even more annoyingly, I submitted it about three times and the insurance never reacted to it. I’d hand in a stack of six bills. They would respond to say what was up with the five other bills and they wouldn’t mention this one at all.

I finally called and we sorted out that the first page of this one bill had become entangled with the second page of another bill, both from the same laboratory. So, I made copies of both and submitted them one last time and memorialized the moment I mailed it off. Maybe we’ll get some more money back. Maybe we’ll get an answer that these were both processed and compensated ages ago. But, most importantly, maybe we’re finally done with this nonsense, which might be about the best one could hope for one year after the death.

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The day approaches

We got the question for the first time about a week ago: “Do you have plans for September 17?”

I don’t know what it says about where my head is, because my first instinct was to ask “Why? What’s up that day?” Like, even if that weren’t the first anniversary of Colin’s death during this time of pandemic, someone would be inviting us out to the hot new bar downtown or something.

I have to say I’m approaching this week with the weirdest sense of calm. I met my therapist yesterday (I’ll blog about that later) and had to tell him that, honestly, I’m more upset at this point about the impending end of my therapy sessions than I am about the birthday. A friend asked me if I’m bracing for Thursday and, again honestly (as if I’d be doing this blog to tell lies about how I feel) I’m not worked up about it.

I don’t think September 17 stands out for me as the day I lost my son because while, yes, that’s the day that stands on the death certificate, we’d lost him in such drips and drops for the weeks and months before that that he was all but gone by that day. Is the day I lost him the day we found out for sure that the tumor had returned? The day we threw the towel in and moved to the hospice? The last day I remember him really showing an interest in toys or books? I have no idea, but – at this moment – September 17 just seems like a day we have to note. Maybe I’ll have completely different thoughts about this in 48 hours. But, right now, it is a day that I will mark, not because I have to but because I want and need to do something to note the day. But I can’t claim that I’m worked up about it at this point.

That said, it is going to be a weird week. I’m absolutely not in love with the fact that this whole nightmare means my birthday will for the rest of my life fall two days before the anniversary of his death. It is odd thinking “It’s my birthday. Cake! Gifts!” knowing that we’ve got to brace for a complete turnaround in emotions in two days. I’m staying home most of this week, partially because I have so much vacation to burn off, but also because we’re not convinced that the kids won’t feel simply unable to cope with it all in the next few days. We already had them both home for parts of last week and the jury is still out on whether they were actually sick or whether the impending anniversary was starting to throw them off balance. We still haven’t decided if we’re going to pull them out of school on Thursday.

We really don’t know what we’re going to do. Germans have this concept of “Todestag,” which translates to nothing more than “Death Day.” But I don’t know what one is expected to do on this day, save go to the gravesite and remember the person. Which doesn’t seem like nearly enough. But I also don’t know how big of a production you want to make out of something like this. I suppose at the end we’ll just do what we think we can handle and that will end up being what is “right” for the day. But it’s a screwed-up way to spend a week.

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Thoughts on buying my son’s gravestone

We ordered the gravestone yesterday.

There was a last-minute rethink about the design of the stone which actually made things easier and means the stone will probably be standing in about a month, as opposed to 2-3 months.

There was also a last-minute rethink about the style of text for the stone which, impressively, cut the cost by about 1,000 euros. Who knew that laser etching was the cheaper version?

Also, we were warned that, when the stone is set up, there will be a phase of a couple of weeks while the foundation hardens. During this time, we are not to shake or push the gravestone in an effort to make sure that it is standing stably. The fact that he told us this makes me think it must happen, from time to time, which conjures up all manner of images of unfortunate graveyard experiences.

So, that’s that. That part of the grave might be done in a month, though I’m led to understand that the gardening is going to be a part-time job for the foreseeable future. There might also be a delay because the graveyard is doing some general landscaping near the site, and it would be better if that was finished before the stone gets put in. Whichever happens, we’ll share photos here when that’s done.