Author: admin

It’s not that I took a break from blogging, but the Medium website, where I’ve written a thing or two, has a writing contest going and two of the fields in which one could enter were “death” and “re-entry.” So, of course, I just cracked my knuckles and dove in, because that’s the subject matter I live in these days. If you’re interested, they’re here. We’ll know in a month or so how that worked.

Of course, even if all I get is a nice “thanks for trying” note, it’s worth it. Writing about my life post-Colin is simultaneously exhausting and rewarding. After banging out the two essays for Medium, I didn’t have it in me to crunch out something new for this blog. But it remains so important to me to get his name out there. To keep his memory alive in this little way. I don’t rely on the show “The Boys” a whole lot for inspiration. Truth be told, it’s pretty damned dark, so it’s not the kind of place I would normally think about heading for inspiration. But one character had a wonderful line in a recent episode I watched. It’s to the effect of:

You die twice, once when you stop breathing and the other when someone says your name for the last time.

That’s Frenchie in “The Boys.” I can’t remember to whom he attributes the quote. Running a Google search, I’ve found it attributed to Banksy, Mackelmore and Irvin Yalom, and that’s all the work I’m going to do for a quote that I’m only using to illustrate a point. The point is, it does feel like I keep him alive in some small way doing this.

At the same time, I question the other ways I keep his legacy going. Like, right now in Germany – as just about everywhere else – you can only get a vaccine if you’re 12 and up. So, Emma got her second shot yesterday, but that leaves Noah dangling for now. I have to admit, I’m inches away from contacting pediatricians, telling them my whole story and ending with a hearty “I don’t want to go through this again. Please vaccinate my 11-year-old.” I mean, good God, he’s taller than most 14-year-olds (and yes, I know that’s not the way vaccinations work). It feels odd, even thinking about using my tragedy to get a leg up on this pandemic. On the flip side, why even risk going through another child’s death?

But it doesn’t stop there. I think about switching jobs all the time. I think about trying to get some of my fiction published. And, in the back of my head, there’s this urge to add a PS along the lines of “I’ve been through hell watching my kid die. Could you just help me out and give me this?” I don’t do it, because it’s hard to see that actually helping me. But the temptation is there. It’s really there at every point in my life. The people in front of me in line, the people dickering with me about doctor’s appointments, the people who catch mistakes in my work. “Can’t you see what I’m going through here? Can’t you just let this slide?”

Except I know that’s not genuine. That would easily slip into me abusing Colin’s memory, turning my sadness into an ice breaker to get me through any kind of problem in the world. But I can’t do that. There’s a pretty big line between remembering Colin and spending the rest of my life being the guy whose son died. So I have to find a balance.

I am going to keep an eye out though, should we get a chance to get an 11-year-old vaccinated. I think Colin could get behind that.

We got rid of some old mattresses a few weeks ago. You would have thought Noah had been locked in a dark room all summer: He acted like this was the highlight of his vacation. In fairness, it was a little exciting, because the easiest way to get them out of the house was to toss them out of the guest room window, to the patio below, before transporting them to the dump. Each removal came with a satisfying thump, as we shot a mattress to the ground and managed not to flatten anyone.

So, that was fun. And no, there’s no real denying that throwing mattresses out a window isn’t fun. But then, with me, there’s always the question if I can enjoy things like this. Not because there’s anything inherently wrong with tricks with gravity, but because two of the mattresses we ditched were ones Colin had used.

We weren’t getting rid of them specifically because Colin had used them. They didn’t fit into any of our current bed frames, which was a major consideration. But there was also the reality that the mattresses were unusable. He slept on them in the guest room during the two-month interregnum between therapy and the hospice, during that whole stretch where Christina was fighting with the insurance company to get us a medical bed for Colin, the insurer fighting every step of the way. It finally arrived a month or two after we got into the hospice.

Anyways, he laid on those mattresses, and it was awkward for the minders, because they had to get down on their knees to do anything for him. And the mattresses got trashed, because there was always an accident with a feeding tube or his diaper or what-not. The mattresses were trash. They had to go.

And yet, they were his.

And I’m writing a little blind here, because I don’t know where I’m going with this thought. I certainly don’t want to hold on to every little thing that he ever touched, especially not something as mundane as a mattress. But it’s also true that there’s a closet full of his clothes that I’ve only ever worked up the courage to peek at two or three times since he died. There are also plans floating out there to set up a shelve of Colin’s things in the guest room, which we’ve done almost nothing about since he died.

We also, while we were in the hospice, took a footprint of each member of the family. It was one of the first things we did in the hospice, and I remember it kind of being a fun day, given everything. Colin, of course, wouldn’t participate, so I had to wait until he was passed out one night to take his footprint. I counted that as a pretty major victory. There was talk, once we had all the footprints gathered and scanned in, that we would make some kind of wall art for our hallway. Like fireworks of footprints, which sounded kind of nice, if not something I might have thought about doing under any other circumstances.

Yet we haven’t really done a single thing regarding those either.

I think, what I’m trying to get at, is the difficulty of weighing his things. We can’t get rid of it all. We can’t save it all. I want to feel an emotional resonance every time I touch something that was his, but I don’t always get that. Today, I looked at the English-language children’s books and realized I don’t feel as much of a gut punch as I would have thought. Then again, I had the thought for this entry while I was doing my stretching exercises in the dining room and it hit me a bit in the gut that I shouldn’t have time for these exercises. I should be chasing a 7-year-old. I should have spent the last year sitting at that dining table with him, helping him with the schoolwork that he couldn’t do in school because of the lockdown. Instead, I’ve got time to write blogs and exercise and try to push ahead with a whole range of household projects that have very little to do with any memory of Colin.

I realize it’s not one of my more coherent entries. I suspect it’s because I haven’t really processed all the thoughts. It’s because I don’t know what to do. I don’t want to get emotional about getting rid of mattresses. Yet, at the same time, I wish I did. That’s about it in a nutshell.

Well, as my Dad always told me – or as I’m sure he would have, had blogging been much of a thing before he died – “If you run a blog on grief and your therapist gives you a writing assignment, well then, that’s a blog entry already written.”

So, this is what my therapist and I will be discussing during our penultimate session tomorrow:

            The more I thought about why I don’t go into our guest room, the more I realized I couldn’t think of a good reason not to go into it.  So, I decided to go to the source and spend half an hour in the room.

            I thought I would catch up on emails.  Instead, Noah showed up and wanted nothing more than a 20-minute cuddle, which was probably the best way to handle being in the room.  So, I sat there, with my surviving son, saying nothing but looking at the room.  We’ve changed some of the furniture around since Colin stayed in the room, but the posters are still up.  Those are the posters I put up in a rush in 2019 when he was coming back from the rehab facility and I thought, since he would be spending a lot of time in the room, it would be nice for him if he had things to look at.  Of course, since I didn’t have time to buy posters, I just put up old ones that we had.  Looking at it now, I wondered whether he truly benefited from an old poster of Heidelberg or a National Geographic map of the United States.  Did he ever even notice those posters during all those hours he spent in the room, since he so rarely slept?  I think not, since most of his attention while he was in the room was focused on medical care, or playing with his tablet.  I remember Christina set up a bird feeder at the window because she thought he might enjoying watching the birds.  I think the minders got more out of it than Colin ever did.

            I thought about how it must have been to lay there.  I thought about the fact that he almost certainly didn’t understand anything that was happening to him.  There were no traumatic flashbacks or unearthed memories.  But it felt like dancing along the edge of a minefield.  I think about Colin all the time and I can find a memory of him and his death forced by the strangest everyday things.  And I guess that might be the answer: I’m so prone to thinking about him and what happened to him and the ridiculous possibilities that, maybe, some of it was my fault, I don’t see the point in going into his room or intentionally translating stories about dying children and diving right into the pain.  It comes all on its own unbidden with enough regularity.  Why go hunting trouble?

            So, I’ll go into the room when I have to and I’ll translate stories about terminally ill children if that’s what the job requires.  But I’m not going to seek out those experiences, because I don’t enjoy the sad memories.  I’m just reaching the point where I can look at pictures of him and smile and remember the fun moments without having them weighed down by the awful events of 2019.  I’ll take more of those any day.  Why do something that will almost certainly dredge up bad memories when those come all the time anyways?

A full day after sending Emma and Noah off on what would feel like a normal summer camp – except it’s run by the hospice and for children who have either lost siblings or are living with siblings with long-term special needs – it seemed like a good time to write this entry that has been knocking around in my head for a long time, looking for a point when it would be good to write it.

I think one of the biggest trials we face as parents after Colin’s loss is making sure that the other two turn out OK. And it’s so hard to gauge how they’re doing. They seem OK. So, does that mean they’re good at rolling with the punches? That they should be acting more upset and their relative normalcy is in itself a sign we should worry? Two years ago, while we were in the hospice watching Colin die, I would have assumed they’d be emotional messes after his death. As it is, I can count on one hand the times either of them has had a meltdown about it.

At times, it veers into dark comedy. A scene from Emma’s first week in her new high school last year. We opted to send her to a private Catholic school, so it’s a bit of a hike from our house and she doesn’t know a soul at this school. There might be some kids who came over together from the Catholic elementary school, but, in general, this new group of kids is a group of strangers.

Now, Christina had warned the school’s administration about Colin’s death when we enrolled Emma, but the head office never bothered to tell her homeroom teachers. So, like, on day two of school, the kids were assigned to write up a little introduction to present to the class. Emma was, like, the second kid to go, and led straight out the door with the death of her little brother.

This is the moment when I wonder if I’m damaged goods, because I see this scene and it feels like the darkest, dark comedy I can imagine. The poor teachers have not been prepared for it at all. There must have been about 20 kids sitting there, looking at their notes, thinking “Um, can I not be called on next? Because I do not feel good about talking about my Star Wars collection after THAT.” From what we’ve been told, the rest of the class rose to the challenge and quickly gave Emma a lot of support. So, that’s great. But what interests me about it is how this has just become such a simple fact to the kids’ day-to-day existence. No lead-up. No warming up to the topic. Just ‘my brother’s dead and that’s who I am.’ This is reality to them; everyone else has to figure it out.

I suppose I’m a little jealous about how black and white it is for them. During a medical checkup two weeks ago, the question of “how many children” came up and I must have hemmed and hawed through the answer for two minutes. Friday I went to the flower shop to get a bouquet for Christina’s birthday and the sales lady asked how old my kids were. When I said 11 and 13, I could see the surprise in her eyes, because I never took Emma and Noah there. I was always there with Colin, and he’d only be 7. So, I had to explain that and, even though this was the easiest ‘My son is dead’ reveal I’ve had in an age, it was still awkward.

None of that for Emma and Noah. It’s not as if they’re in denial. They’re just so matter of fact about it. As we left their grandparents’ on Thursday, Noah said he would wave like Colin, which involves only bending the top two knuckles of each finger, no wrist movement whatsoever. And it’s great that he has this memory of his brother, but it always takes me by surprise that he doesn’t feel this need to warn us that “I’m going to bring up a memory of Colin now, so brace yourself.” And why should he? He knows his brother is dead, but he’s still part of his life. I notice, when the kids talk about Colin, it’s always in the present tense. If we find one of his toys, it’s always “Oh, that is Colin’s,” never “Oh, that was Colin’s”

A while back, after we got our Switch, and when they were obsessed with this Mario racing game, I noticed that they had created a new avatar. Looking more closely, I realized it was named Colin. I asked and, indeed, they had created a Colin avatar with which they race. So, on some level, their dead brother is living, digitally, racing against Mario and Wario in a game that makes my thumbs hurt if I play it for more than one round. Yes, I fought back some questions about whether they thought this was a good idea and whether that was the best way to remember their brother when I noticed it, but mostly, it felt good to have him here on some level.

This week feels a little different. Like a lot of things are coming together and maybe next steps are becoming possible.

Because it’s me, I remain most excited about tomorrow’s haircut. But that’s probably far from the most significant step. First off, I got my first dose of vaccine on Tuesday. So far I’ve noticed no complications, aside from the fact that, the way I understand the calendar, I won’t be fully vaccinated until Friday the 13th (in August), which seems like a weird coincidence that I’m just not going to overthink.

I will also meet with Dr. Kehrer on Thursday to start the final sessions in my therapy, which will be bittersweet, but it’s at least motion in a direction.

And, as of this weekend, I’ve stopped wearing compression stockings full-time.

These fashion accessories were thrust upon me way back in 2016 after I had my first embolism. I had to wear them on any day when I was sitting for a long time, ie working or traveling. By the time the new embolism struck last year, I had reduced my time wearing them exclusively to time working or car trips of more than an hour. I had grown so lax in my mind that we were several months into the pandemic when Christina pointed out that even if I was only sitting around the house doing my job, it still counted as ‘sitting at work’ and I should probably have been wearing my stockings that whole time too. Oops.

Anyways, the new rules after the new embolism required six straight months of the stockings, taking them off only for showers. You get used to them. They’re billed as being like a second skin and, honestly, now that I get whole days without them, I can’t say that I notice their absence particularly. The main thrill is skipping the nuisance of putting them on.

That said, it is nice not to have them, especially as it gets warmer. When I only had to wear a stocking on one leg, as was the case from 2016 to 2020, I didn’t let it bother me. I walked all over the place in shorts with one stockinged leg. Somehow, having both legs in stockings made me self-conscious. I’ve caught myself more than once in the last month or so turning about as I’m about to leave the house in shorts and opting for jeans instead. Somehow, letting the world know I have both legs in compression stockings is a step I’m not in the mood to take. So – yay – now I’m free of that for my free hours.

It feels like a slow return to normal. Then again, every time I start thinking about getting back to normal, I find myself asking what on Earth that even means any more. The normal before Colin was born? Before he was diagnosed with cancer? Before he relapsed? None of those times are coming back, so it’s time for a new normal. It’s going to mean meeting new people in new situations and there are going to be those awkward moments where I have to say “Oh, I HAD three kids.” I don’t want to say that I’m not looking forward to it. It would be a lie to say I’m not getting sick of lockdown. But it’s going to be scary negotiating this new post-Colin world we barely got to know before we were all sent home to hide from the virus. But all you can do is take it a step at a time and take whatever little victories you get.

Feeling ever more brave about heading out into the real world, as more people I know get vaccinated and as my appointment for my BioNTech (Pfizer to you Americans) shot nears on Tuesday, I’ve started checking about getting out of the house a little more. Perhaps the second-most therapeutic thing I’ll try to do next week will be trying to get to see my therapist for the first time since October (the most therapeutic thing will be getting a haircut for the first time since December).

Clearly, I’m surviving OK despite six months of not meeting with a therapist. At the same time, there has been a certain lack of, shall we say, course-correction without regular meetings with my therapist. I fill the gap with these blog posts, turning all y’all into honorary therapists for me, but you still kind of want a paid professional sitting down with you from time to time, because he’ll tell me when I’m being an idiot. OK. Several of you will as well, but you sugar coat it nicer.

And you do want to know what’s going on. And I know that Dr. Kehrer isn’t going to solve all my problems or answer all of my questions. I’m having random moments where, out of the blue, I’ll feel on the verge of crying. If there’s a link to Colin, I haven’t figured it out yet. There might be a link to moments when I’m editing a particularly depressing story at work, but I can’t be sure of that either. And, given everything that’s happened, I don’t know if a momentary feeling of sadness is all that strange. But you still want to know what a person thinks about it. And why those are happening more often, but actual dreams where I’m hanging out with Colin – I had one this week: He was filthy, in a good way … like we were walking down a dirt road and, like any pre-schooler, decided to bring half of it home with him – why are they so rare?

So, it’s good that I’m going to see Dr. Kehrer, assuming I’m not one of those lucky ones who gets the vaccine and then spends half a week feeling like I just got a flu and a half. But it also reminds me that our time is limited.

Dr. Kehrer had told me last year that the insurance company was only going to pay for a few more sessions and, more importantly, it was probably time for me to move on. So, we’ve got like three sessions left. By all rights, we should have been done months ago, but then I started having breathing problems in the autumn and we decided to give it a rest so as to risk the chance of me infecting him (though it just turned out that I was having a pulmonary embolism, not Covid-19 (and I suppose it’s a good sign that I just had to look up the word for ‘pulmonary embolism, so maybe that trauma is at least fading)), and then Covid-19 case counts in Germany went through the roof and it just seemed safer to forgo in-person meetings and, if we only had three left, I was going to do them in-person, and not online.

So I contacted him and he set the appointment, and then told me how lucky it was that I had thought to reach out since, by German law, had we gone two full quarters without meeting, all the rest of our appointments would have been nulled and voided. Oh Germany: There are always rules here and, it would seem, no exceptions, even for pandemics. So, I sidestepped that problem, but it means I’m stuck with the new problem.

Three sessions left. And again, I don’t know why I’m letting it weigh me down, because I just did fine for six months without a single session. But still. Having a therapist feels like it’s become almost part of my identity.

“Oh, your child died.”

“Yes, but I have a therapist working with me,” seems like a good response to that. Like it’s the responsible way to be.

“Oh, my sessions ended” or “I’m back on the hunt for a new therapist,” just doesn’t feel like an adequate enough answer. And then there’s the fact that I really do like Dr. Kehrer, and I imagine professionalism will require that we don’t meet up for beers in a few months, so it’s sad to contemplate another friendship ending.

But at least I’ll get three more sessions. I suppose you take what you can get.

We got the first piece of mail for Colin in months this week. I promptly hid it in the den, because I didn’t see why Christina had to have that “Oh God” moment upon finding the letter in the mailbox (and yes, she reads the blog, so she’ll be finding out this way).

It was a catalogue/newsletter, I’m pretty sure from one of the suppliers of some of his breathing equipment. I don’t have it in me to read it, but a lot of the articles seemed to be about how people with tracheotomies are surviving the pandemic. How some people, despite having serious breathing impairments during a pandemic that seems to give many people something like pneumonia are surviving, and even finding ways to get married. There’s also ads and a crossword puzzle and, somehow, the newsletter smells vaguely medical. But there it is.

I’ve sneaked a peek or two at the people talking about living in fear of the virus, perhaps even in more fear than you or I might have done. And it makes me realize once again, how much I miss the feeling of empathy. I mean, I get it. They need tubes and suction attachments to breathe and keep their breathing passages free. A common cold is a big deal for these people, forget whatever the coronavirus does to you. They are legitimately living in terror. And yet, I look at the pictures and think “You’re alive. You don’t get to complain.”

I don’t like the fact that, time after time, this is my first reaction when I hear about other people’s problems. We’re coming up on two years since Colin’s death and I would have thought the empathy would kick in a little bit. It’s not. Someone I know just had a miscarriage. From the little I know – I never officially knew she was pregnant – it was pretty bad. Here’s the point where I’m supposed to write “I can’t imagine what they’re going through.” But, of course I can.

But then I think of this one guy who showed up at the bereaved Dads meetings a few times last year and, from what little I worked out about his back story, was there because his wife miscarried too. And I remember the first time I caught the story, I was thinking “Oh, you’re not like me at all.”

I’m not proud of that thought. What I wish I had immediately said to myself was: “No Niels, you at least got to know and have your child for five years. He didn’t even get an introduction.”

But that’s not what I thought. And, I have to admit, with this new tragedy, I somehow turn it all upon myself. The thoughts are less “Oh, how terrible for them” and more “Oh, I hope I’m not expected to be the one in the group who knows what to say, because I already lost a kid.”

I see this happening again and again. A friend is having a health scare and my thoughts are not enough “Oh, I hope it turns out to be just a scare” and more “He’s really good at listening to me talk about my problems since Colin’s death. I hope he doesn’t die so I have to find someone new.”

Don’t misunderstand. I want to feel the sadness and the horror and the loss. No, scratch that. I’d like to skip all of that. But, if it’s going to happen, I’d like to react like a normal person. Instead, I seem to keep reverting to a range of “Meh, I lived through worse” to “But how will this affect my grieving process?”

I don’t care for it. But, as with so many other things, I don’t know what to do about it. Everything about this remains a mystery to me. Last week, I found a list I’d made of questions for the doctor after we got Colin’s initial diagnosis. My reaction was “Huh. Look at that.” A few days later, at work I was asked to translate a story about a 5-year-old survivor of a cable car crash in Italy and, after skimming the German-language story about a 5-year-old boy in the hospital, I told the person running the desk that day that, thank you very much, I’ll translate any other story but that one. I brushed both of those off without really much of a reaction at all. I let this item sit overnight so I could think about it and, between the time I wrote the rest of this and the time I’m adding this line, I turned on an episode of “This American Life” to find they were talking with a comedian … whose 2-year-old son died of a brain tumor. And my only thought is: That’s something to add to the blog.

But then, one other day that week, I dropped a jar of honey at breakfast and absolutely demolished a drinking glass. Not a special glass. It’s from IKEA and probably cost 39 cents. But I convinced myself that this was going to be a problem because we always tell the kids to make sure that the tops of jars are screwed on properly, and I hadn’t check this one and then I picked it up by the jar top and it fell down. So, I was going to get called out for not securing the honey jar, and then I was going to have a fight with a colleague about a months-old disagreement and then I was mad at the world and convinced that Colin’s death was somehow something I deserved. You explain that to me. List of questions about my dying child: my heartbeat barely elevates. Broken IKEA glass: The bottom drops out from under me. Acquaintance has a miscarriage: I go “I’ve seen worse.” Friend ends up in the hospital and I think “Well, it’s about time someone else goes through this for a change.” And now I’m looking for an example where I react halfway normally to something sad and nothing whatsoever is popping into my head.

Maybe I was always a little off. To get all pop culture, there’s a Barenaked Ladies song about a guy who always laughs at a funeral and, it’s true, my sense of humor has always been a bit off. To get even more pop culture, I recently got started on “The Falcon and the Winter Soldier” and there’s a point where a character muses that there’s the words “widow” and “widower” and “orphan,” but no word for a parent who’s lost a child, because that’s the worst thing ever. I don’t seek inspiration from superhero movies normally, and especially not Marvel ones, as I’m a DC man, but I think there might have been a lot to that. I’ve had something happen to me that people can’t bring themselves to name. Even Germans – who have words for everything (and it’s always just one, ridiculously long word) – don’t have a special word for surviving the death of a child. And yet here I am. Surviving, for sure. But you can’t entirely shake the sense that that’s just not quite the same as living a normal, happy life.