Five Minus One

I’d all but forgotten that we still had Colin’s breathing machine and now I’ve had to remember it three times in a week. Once when Christina reminded me that we still had it. Once when I wrote my blog entry about it and now, when I’m writing the blog entry for the second time, because I seem to have forgotten to save it.

In truth, it had become almost like a half-ignored part of the geography of our upstairs hallway. A machine in a box in a corner by the bathroom door that we tripped over every now and then. It’s strange when you consider how attached I was to the machine at the start of the coronavirus crisis, when I thought having a child’s breathing machine might somehow save us if one of us got infected, ignoring the fact that I don’t know how to use it and legitimate questions about whether it could pump enough air to help Noah, much less me. I never even toyed with the idea of turning it on when I had the embolism-related breathing problems earlier this year.

But I guess, as freaked out as we all are about the virus, we are also learning to live with it too. I no longer worry about whether we have a breathing machine or not. Meanwhile, I guess we’re getting rid of it because people are relaxing too.

The plan had been to donate it to this organization in Münster that would ship it to Ghana. We have a ton of friends originally from the Münster area so, before coronavirus, it seemed like the simplest of things to have one of them take it over there when they headed back to Münster to visit family for Easter. But then the pandemic came and no one went anywhere for Easter.

But, think what you might, people are calmer now and someone is heading back to Münster for Christmas, so the breathing machine is on its way. The treasurer of the group lives close to where the friends happen to be. They’ll give it to him, he’ll get it to headquarters and, one day, the machine will be in Ghana, maybe keeping another kid alive. It’s hateful to think about it this way, but hopefully it works better for the next kid (though we can’t blame the machine for Colin’s problems).

Another thought I’m not too happy about, but there is is. Maybe we’ll be able to claim a tax deduction. And that sounds so mercenary but, hell, after everything we’ve been through, I’ll take back every cent I can if it lets us do something nice for Emma and Noah.

And then there’s the truth that, even if I hadn’t thought about it in a while, it’s another memory of him that’s gone. That said, I doubt we’ll ever be out of memories. On Saturday, after I got everyone to bed, I sat down and watched an episode of “Game of Thrones,” because I had promised to myself that I could watch it if I lost enough weight. But it wasn’t a very good episode, so I started running my hands through the seat cushions and found a plastic drill bit that belonged to the extravagant workbench playset he got back for Christmas in 2016. Had it been there since he dropped it however long ago? Was some other child responsible? I don’t know. I don’t really care. I’m just pretty sure that, whether it’s a breathing machine or a toy drill bit, there’s always going to be something else lying around to remind us of him.

Thanks to everyone who lit a candle for Colin on Sunday. Here’s the images of candles people shared with me. And the reason it took me so long to post after Sunday was because I’ve spent the better part of the last few days trying to figure out how to get all the photos into one image, because I’m that useless with computers. But I didn’t feel like posting four separate blog entries for each individual candle.

Stupidly, we neglected to take a picture of our own candle. So, there you go.

The holidays continue to be a time I look forward to with Emma and Noah while dreading them because of the memories of Colin. Being here in the house – which is what we would normally be doing with the impending holidays, but now with the added weight of the impending lockdown – can be such a catalyst. The kids have once again found the photo albums and pictures of Colin at Christmas are in vogue. I don’t mind seeing them, but I wish there was a way to prepare for them. But how do you prepare for that?

And it creeps up in other ways. I was reading some old blog entries a few days ago. A friend with whom I’d lost contact found the blog and basically learned in one go about Colin’s birth, life and death, so I went back to see what I’d written. I found the entry from a year ago about how hard it was in 2019, putting together the end-of-the-year obituary at work, thinking about Colin while I wrote a few last words about Doris Day and Eddie Money.

“Interesting,” I thought. And then I was here in my study on Thursday, putting together this year’s list of the dead. I was about halfway through and then it hit me again, just about as hard as it had gotten to me in 2019. And I can’t tell you why. It’s not like writing about Kirk Douglas, Sean Connery or Terry Jones makes me think all that much about Colin. But there it was.

So, I guess we just keep on remembering. Either with a candle or a photo album or a surprise segue during obituary writing. Again, thanks everyone.

You know, just a week ago I was wondering if I even needed this blog any more, since it feels like the bulk of what I do here is riff on different variations of “it’s no fun having a dead child.”

And then … this week. Lord.

So, the nicest thing my new doctor (s)said to me was: “Mr. Sorrells, you don’t have a weight problem.”

The worst thing my new doctor(s) said to me was: “You need to get to a hospital right away, because your bloodwork indicates you’re experiencing a pulmonary embolism right this moment.”

Oy. I think most people who read this blog also follow me on Facebook. However, for the few who don’t, this is the best summary of events I can muster:

• In September, Noah jumped on me while I was doing some exercises for my back. My leg hurt for 2-3 weeks, in a way that reminded me a bit of the blood clot I had in my leg, but not entirely either.
• I did call my doctor, who had no time to see me. But I did get a referral to the vascular surgeon who has looked at my leg in the past. He found nothing and the pain went away on its own.
• A couple of weeks later, I noticed I was getting winded doing the simplest of things, like climbing a single flight of stairs or climbing the ladder into the attic.
• I managed to get to see my doctor this time, but he was convinced that my symptoms showed I was either recovering from a pulmonary virus of some kind (but not THE virus) or that I was just out of shape after months of being in lockdown and because my weight did kind of skyrocket after Colin’s death (although I got control of the situation in June and have since gotten myself back down to a respectable weight).
• Despite his assurances I was OK, my breathing remained haphazard. Some days I felt fine. Some days walking and talking were beyond me. I really got worried when the five-minute bike ride to our main drag turned into a hassle for me.
• I decided to get a second opinion, but this doctor couldn’t see me until Tuesday. Nonetheless, she had blood drawn.
• That same night, I went out for a walk, as per doctor’s orders. About half an hour in, the head doctor from the new medical practice called to tell me that my blood showed every sign of me having an embolism right that moment. The relevant measure should be 0.5 or lower. I was at 4.85. He sent me to the hospital straightaway, where they kept me for two nights, put me on blood thinners (for the rest of my life, though that’s what they said in 2016 when they put me on blood thinners the first time) and hooked me up with compression stockings for both legs, which I’m supposed to wear full-time through at least March.

And now we’ll have to see. There seems to have been no damage to my heart or lungs. I can say this, after receiving the first blast of blood thinner, my lungs cleared pretty quickly and, man, there is nothing quite like restored lung capacity to make you really appreciate the joy of oxygen. I spent the first night in the hospital bed just enjoying the feeling of filling my lungs to capacity. One learns to live with the stockings (and it’s nice to have an extra layer of clothing during the German winter, to be honest). And I was on this blood thinner back in 2017 and tolerated it just fine, so here’s hoping.

For purposes of this blog, the more interesting stress test was how I responded to being in a hospital situation again. This was the hospital where we got the first MRI telling us that Colin had a brain tumor. It’s where he went in May 2019 while they tried to figure out if they could regulate his breathing, back before we knew he was going to die. It’s where Christina went when she fell down the stairs, pregnant with Colin.

I went there because it was the closest hospital to us and, honestly, I didn’t think of the associations until I got there. And there weren’t that many. I’m sure it would have been a much worse head trip had I ended up – somehow – at the hospital across town where we spent so much of 2016 and so many futile trips in 2019 trying to get his tracheostomy into shape. But still … after the bizarrely empty emergency room confirmed my diagnosis and suggested I stay (oddly, they were prepared to release me that night, despite a blood clot in my leg and the existing embolism), they had me sent to the cardiology wing. The orderly wheeled me and my bed through the maze of interconnected hospital buildings and, at one point, we passed a row of children’s cribs. And I couldn’t help but wonder if Colin might have ever been in one of them.

The stay in the room was also a challenge. I don’t know if it’s a trend in German health care or a side effect of the pandemic, but they’d converted a three-man room into a four-man room, so things were crowded. And one of the guys NEVER shut up about his eight (?) heart stents and the way things used to be in German health care and what he thought about Merkel’s approach to the pandemic and how he has this thing with his spine, but he’s been told never to have a doctor look at it and how he’s an old enough hand at heart attacks that he can tell them coming from a mile away. I’m mostly proud of myself for not asking why, if he knew all about them, he wasn’t about 50 pounds lighter.

I get it. The guy hadn’t had a heart attack this time, but something bad had happened. He spoke in a pretty thick Berlin accent, which remains impenetrable to me to this day, so I am fuzzy on the details. But he’s nervous and he wants to get things off of his chest. I really do get it. He’s probably lonely, because it sounds like he hasn’t seen most of his kids and grandchildren in an age due to the virus. One of his kids, from what I gathered, seems to have a growth on his chest that they’re hoping to God isn’t cancerous, so I’m even trying to sympathize with him.

At the same time, I’m dealing with my own issues and really just wanted some peace and quiet. Except I’m locked in a room with Monologue Man. I’m guessing he’s about 15 years older than me and would happily tell everyone about his experiences with the health care system. During one soliloquy he made a comment about how bad things can end up, which got a wry smile from me. He misread me, of course, and assuming that I’m younger than him and a foreigner, have no idea about the German health care system, so he tore into me a bit about how NO ONE has the same level of knowledge he has about the problems of the system and the health dangers we all face. And it was tempting there to launch into my own speech that, I’m pretty sure, might have made him wet himself, given his grandkid’s status, but I’m not so sure with my German around strangers and I don’t like the idea of weaponizing Colin’s story. So, I kept quiet.

Besides, I was dealing with Colin. As luck would have it, a photo of him from 2017 popped up in my Facebook memory feed while I was there. Wouldn’t I like to share that with everyone? No Facebook, not so much.

But it was bigger than that, because I never really thought I was at death’s door during this experience. Compared to the 2016 embolism, when I had too much to drink the night before, woke up unable to bend my leg and then almost passed out on the way to work before checking myself into the hospital, this was a piece of cake. I was actually happy to find out it was an embolism, because that at least meant it wasn’t the coronavirus. But still … there was that thought of death nagging there and I can’t escape that there is still a part of me that every day goes “Well, if I die today, maybe I’ll see Colin and we can spend eternity playing Duplo,” which doesn’t sound so great in retrospect, but seemed OK as I was lying there trying to catch my breath. While there is no part of me actively seeking death, there is this part that kind of doesn’t mind the prospect, and that worries me a little bit.

At the same time, Emma stayed home from school on the first full day of my hospitalization, because she had dreams that I died and was apparently in no shape for school. So, I can stay alive and take care of Emma and Noah or I can die and maybe see my son. And that’s a crap choice. And Mr. Stent thinks he’s the one who’s been through the wringer?

Well, maybe. Eight heart stents does sound kind of insane.

I tried to say goodbye nicely to him and wish his grandson all the rest. Ironically, after two days of my not understanding his accent, he was totally flummoxed by mine, so one of the other guys in the room had to do real-time translation, which was a wound to my pride as a German speaker, but seems like an appropriate way to end my relation with this guy.

Oh well. Onwards and upwards. We didn’t have the energy for much of anything when I got home yesterday, so today we’re having celebratory “Return from the Hospital” sushi, which seems like a nice idea until you realize someone has to get sick enough to go into the hospital before it can happen. Also, were this actually a thing, it would have bankrupted us back in 2016. So, I’ll just try to stay out of the hospital for the time being.

And now I suddenly have time to blog every day.

One thing I didn’t want to get into yesterday was this date: December 13. It’s global Children’s Memorial Day. It is marked by lighting a candle (outdoors) if possible at 7 pm in your time zone. If done right, a wave of candles will pass across the globe on this day to remember the dead children.

The hospice does a program every year. We went last year. It was a lot to take in, it being our first time participating. We didn’t know what to expect, what to happen, what to do or whether we had to pay for the food provided at the end. Above is his name, as we wrote it on the list of children being remembered. I’m not sure we had a family consensus at the end of the event whether it was an event we wanted to participate in annually or not.

It’s all kind of academic this year. The hospice is doing the event again this year and it sounds like they’re taking great pains to make sure everyone has their own space during this time of pandemic. Instead of bunching all the candles together in the garden, a chain of lights will stretch down the street.

But we can’t go. I’m working. Our car (RIP) has finally given up the ghost. It’s almost like giving up one more memory of Colin, when you think about the number of times we drove that car to the hospital and the hospice and the emergency room and the physical therapist and the rehab center. So, there’s just no way we’re going to try to pack up the kids immediately after my shift ends and take an unnecessary trip on public transportation across town during a pandemic.

But we will stop at 7 pm and light a candle in our backyard. If anyone else feels so inclined, I’d encourage it. And, let’s be honest, aside from the two or three people who read this blog whose property happens to be in a line of sight from my house, I’ll never know if you do it or not. But it makes me feel a little better knowing that there will be lights for Colin and all the other kids in a week. It’s not much, but it’s not nothing either.

I seem to have a harder and harder time making time to write here. I wouldn’t say I’ve lost interest. It simply seems less pressing than it did a year ago. I can’t quite decide if that’s a good thing or a bad thing.

There are other factors. Whatever is going on at work is taking a certain amount of my energy. Ditto whatever is going on with my health. Also, I’ve discovered online crosswords, which is a huge time suck. And then, as time goes on, different ideas pop into my head and what I should write about and then I can’t decide which topic should become my priority and then it all turns into a muddle.

So, perhaps I just had a sign. We decided to get new appliances and the dishwasher and refrigerator were just delivered, which involved a certain amount of drama with deliverymen showing up five hours earlier than scheduled and then the dishwasher that was delivered being a slightly different model than what was ordered. So, normal life.

And yet … Because of the early arrival, we had dishes in the washer that we were going to run after breakfast and not enough clean plates. So, Christina grabbed Colin’s old plate, which has been at the bottom of our dishes drawer pretty much ever since he went to the hospital in 2018. I still haven’t decided if it was pleasant or a shock to see it out on the breakfast table this morning. Then, when the delivery guys pulled the old fridge out, we found 6 euros beneath it. Colin used to lie on the floor in front of the fridge and pass small items beneath the vent. Who knew he had also learned to steal money from us?

It all makes me wonder. I’ve asked myself once or twice if this Christmas, our second without him, will be easier or harder. You’d think we’d be more used to his absence. But when we’re reminded of him, it’s more jarring. Emma read a book a few weeks ago about kids being separated from their parents. That set off a crying jag. Emma and Noah were on a Zoom call with the bereaved siblings group and were asked to get a picture of Colin. Instead of interrupting me at work (bonus points!) they decided to print one off of their laptop. But they didn’t warn me that a picture of my dead son would suddenly spit out of the printer next to where I was working. I found one of his old Playmobil toys while making the beds – one I had been certain I’d moved upstairs along with all the other old children’s toys.

I suppose it doesn’t help that we’re all still under this partial lockdown which, in Germany, seems to provide the added bonus of annoying everyone while not doing much to prevent the virus’ spread. Maybe this would all be easier if we could head to a Christmas market and take our annual trip to the Christmas circus, instead of spending so much time locked in this house with the memories of Colin. It’s my first attempt to write Christmas cards in two years, writing “We’re doing OK” and wondering what percentage of that sentence is a fib. I suppose it’s just one more month in this weird season. I guess the real question is whether the months keep on getting weirder or if we can hope for something like normal.

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.