Five Minus One

There will come a point, I imagine, when the writing stops being about Colin and just about what life keeps throwing at us. Case in point: this pandemic. More than once I’ve caught myself thinking that, thank God he died before this hit us, and then wondering what’s going on in my head that I’m thanking God that he didn’t hang on a little longer.

But, as much as a nightmare 2019 was, the idea of trying to juggle a child with a breathing disability and a cancer diagnosis through this nightmare seems beyond daunting. The little bit we hear from the hospice – and also from some of the medical blogs/Twitter accounts Christina follows – sound nightmarish, with new restrictions at times keeping parents away from their children in hospitals and hospices. When you think that a parent’s presence might be the only thing keeping a small child compliant with the health care regimen, you have to wonder how that’s going.

And it’s not as if the virus is leaving us entirely unscathed. I mean, compared to people who have gotten sick or ended up in the hospital, we’re great. That said, we’re almost done with our two-week quarantine after a kid in Emma’s class turned up with the virus. On Friday, the kids will return to school and then we’ll see how long they get to keep going until there’s the next change in school policy. I suspect we only have days.

Now, to be clear, Emma is the only one of us on quarantine. The rest of us are supposed to keep our distance from her and limit the amount of contact we have with others. Given that Emma is the most likely of all of us to forget her mask inside the house, this is a near possibility. We’re trying our best but, the fact of the matter is that, whatever Emma has, we have to.

I still don’t know if the kids truly understand the nature of this thing. Having watched their brother die, they are aware of illness and death. But then you see how hard it is to get them to follow hygiene guidelines and you can tell it hasn’t quite sunk in. Last weekend, Noah and I took a walk to gather pine cones for a decoration for Colin’s grave. I didn’t make a big deal about keeping distant from people, because I figured we were just walking in the woods. But, as luck would have it, we ran into a rather large clump of people on the path to the woods, including Noah’s friend Henry. We were hardly in a throng of people, but there were enough. And when Henry asked if we were going shopping, Noah fairly loudly responded “No, we’re in quarantine!” which I’m sure delighted all the people who were within 5 meters of us.

So, who knows?

The kids have no symptoms. Christina can’t decide if she has a sore throat or not. I’ve noticed for about a month now that I can be slightly out of breath at times. No one’s talking about putting me on a ventilator or anything: I’m simply not getting air in like I’m used to. Who knows what it means? The symptoms predate Emma’s classmate getting sick, so it’s already suspicious. I’ve been to my doctor – who is astoundingly chilled out about the virus – twice now. His first diagnosis is that I’m recovering from some other viral infection. His second was that I need to lose weight.

I don’t entirely disagree with him on that fact, but that’s overlooking the roller coaster my weight levels have been on. Let’s say I was at around 101-102 kilograms before everything went to hell. That was overweight, I won’t dispute it. Then I pretty much stopped eating and dropped to 88. I won’t deny that was nice: I got into jeans I hadn’t worn since George W Bush was president! But it wasn’t healthy weight. Then my appetite returned and the lockdown started and I barely left the house and one day I was at 104. However, I had no breathing problems. Those didn’t start until months later, when I’d worked my weight back down to 99-100. But my doctor doesn’t want to talk about that. He only wants to talk about how I was around 94 in January and I’m around 99 now.

So yes, the coronavirus is new, but the difficulty in figuring out how to deal with it leads on a road to the nightmare that was Colin’s death. Even now, in those – mercifully fewer moments – when I’m catching my breath after climbing the stairs, I find myself wondering if this is how Colin might have felt at one point, when his lungs were fighting off the infections? And then, to take the trauma one level further, I wonder if this might have been how my Dad felt as the emphysema began to worsen.

I guess there’s only one answer: Who knows?

I dreamed last night that we had maintained a room at the hospice this whole time, even more than a year after Colin’s death, but that we finally moved out, which was a shame, since the man who ran the hospice turned out to be the drummer of Fleetwood Mac (but he wasn’t Mick Fleetwood). I can only take it as a sign that my subconscious wanted me to write something, because I took mental notes during the whole dream so I could blog about our move and the variety of celebrities we met while at the Fleetwood Mac-operated hospice.

The thing is that I risk writing the same thing over and over. And yes, I do this for me, not for you, but I also like to write new things from time to time.

That said, there is admin to catch up on. I just got my bill for running the website, meaning there is a real financial decision to be made about whether or not to keep this going (I will). There is the odd bit and piece of news to report.

• We seem to have finally sorted out all the health bills. After a lot of correspondence with the insurance, it turned out that the final bills I thought were unreimbursed had long since been taken care of – I had just submitted separate pages of a multi-page bill as separate items. I would have been happier had it turned out that the insurance still owed us hundreds of euros, but clarity is nice too.
• It looks like all of his old savings accounts are either shut down or have been transmitted to his siblings’ name. Again, kind of mind-numbing that it took so many months after his death to get that done. It makes you wonder how long it takes to shut down the life of someone who actually used their bank accounts. But again, it’s good to have clarity.
• And, if nothing else, my little blog has been discovered by spammers. It’s sort of touching that someone whose online handle is so straightforward – porno, or erotic izle; I can’t decide which is my favorite – is taking the time to tell me that I’ve helped them. And I know it’s just a computer in deepest Russia generating the words, but I live with the hope that some porn star wannabe is taking some message out of these words of mine and using them for something good. I know the odds are slim, but hope must live on.

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.

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.

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.

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.

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.

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.