Five Minus One

                  Some things worked out OK in the last few days and some other things, well, they didn’t exactly blow up in our faces, while not quite being as we might have imagined.  Overall, if you ignore the general state of the world, I guess we’re a little bit ahead of the game.

                  Let’s start with the success.  When I was at the hospice in October, waiting for the bus to leave for the men’s weekend getaway, I looked at the rock we had painted for Colin to leave at the pond there.  They have a ton of rocks, one for each child who has died there.  And I noticed it looked a little shabby, because paint is going to peel off a rock during the course of five years.  It took weeks to get someone on the line to sort out a time to come and fix it up.  And I get it: They’re busy providing care for people suffering major health problems, so me emailing about repainting a rock is probably of second or third priority, at best.  So, I didn’t get too worked up and we eventually worked out an appointment. 

                  The kids and I went over a week ago Saturday and I think it was a good thing.  The kids hadn’t been to the hospice in about two years, so there was a lot of “I don’t remember that building” and “Hey, that one place got fixed up” kind of moments.  And then we were there.  They did not recognize the therapist who helped us with the materials at all, and, to be fair, she has grown her hair out.  But the few people who saw us – staffing is low on Saturdays – couldn’t get over how tall both kids have gotten. 

                  And that’s the thing about the hospice, no matter what bad memories I have of the place and horrible associations – none of which are the hospice’s fault – there’s always an odd sense of homecoming there.  Like I’m coming back to my parent’s old house.  And I have to remind myself that I cannot walk freely around the house like I used to and I cannot go to Colin’s room to check it out just because I want to, never mind the fact that it was occupied last weekend.  The therapist told me I wouldn’t recognize it anyways.  It’s been repainted and they knocked out a wall or something so parents can sleep up on the same level with their sick kid, which would have been a godsend back in 2019.  There was something about getting up that flight of stairs every day, wondering if maybe Colin had died while I was asleep, that took all my energy that summer.

                  Maybe it’s not so much because I lived there, but because I lived so intensely there.  And the memories are bad, but they are strong.

                  Anyways, we got there and Emma took over the painting, because she is the family’s resident artist.  Noah and I helped with filling in some colors and such, just so we could say that we had all contributed, but Emma really did the work.  Then we left it to dry and I came back a week later to apply a layer of protective gloss – which led to me wearing away some of the paint and getting some grit mixed in with the gloss – but the rock is now back in its place and looks a ton better than it did a few weeks ago, if not as good as it looked on Friday before I started applying the gloss.  So, that was a good thing.

                  As it happened, the youth group for affected siblings was having a program while we were there, which led to some confusion among the staff as to whether Emma and Noah were participating.  Emma has said she’s done with the group.  Being there actually made her feel worse.  I suppose I get that.  I’m trying to get Noah to leave a door open to participating again, but he’s also hesitant.  And, in the end, I suppose the kids know better than I do if they need therapy for this.

                  We didn’t only go for the rock.  A couple of months ago, Christina got an email that it was time to pick up the lantern we had made for Colin.  That led to a lot of confusion, because we had assumed Colin’s lantern would hang there forever.  And now we were being told to take it down.  As I said, on some level, the place feels like home.  And being told to pick up the lantern felt a little bit like being told by your Mom to come and get your stuff out of the attic finally.  It was an unexpected kick in the gut, especially when you keep thinking that there’s no way this stuff can get you like this any more.

                  To back up, the lantern is nothing more than a baby food jar that’s been decorated.  Every patient who shows up either makes one themselves or has one made by friends and family.  Some of them are astonishing.  Colin’s was just his name with some Curioius George images we made with glass paint.  The deal is that, while you’re there, the lantern hangs at the door of your room.  When you check out, the lantern goes into a special room decorated to look as if all the lanterns are hanging from a tree.  Each time you come back, you pick up your lantern on the way to your room.  If you die, the lantern stays in the tree room.

                  And, like I said, we had assumed it would be there forever.  But, there’s only so much space in the room, so, after five years, you’re asked to move yours out.  If anyone ever explained that to us, neither of us remembered it.  And when would have been a good time to tell us this rule?  It’s not as if the administrators could have taken us to the side on the day of his death and told us “OK, there’s a five-year clock starting on the lantern now.”  So, we worked out that I would pick up the lantern while I was there for the rock.

                  Of course, these things always turn into events with a touch of macabre.  Or maybe I’m just wired to see things that way.  But, like I said, they have a lot of lanterns, and neither I nor the therapist could remember exactly where the lantern was hanging.  I could have found it, since one of the interns at the hospice at the time had made a picture of Curious George to stand by the hook holding Colin’s lantern.  I would have found it that way pretty quickly.  But the therapist said she would consult the database to find where the lantern was hanging.  Which made sense.

                  So, she opens her database and asks me for his date of death.

                  And that threw me for a second.  Sure, you have to catalogue things somehow, but it never occurred to me that they would opt for date of death.  Not when there are names and dates of death available.  I guess the date of death is the best way to trigger when the reminders are sent to come and take down the lantern.

                  But it only threw me for second.  And then that part of my brain clicked where I told myself “Oh, it’s just another awful things related to Colin’s death.  You remember those, don’t you?  They used to show up every hour.  Now they’re almost a novelty.”  But, apparently they’re still there and I’ve learned to just roll with it, so instead of acting horrified that this is their filing system, I just rattled off “17 September, 2019” like someone at the DMV had asked me for my SSN.  I think I was almost kind of cheerful about it.  Like, look at how well I remembered that.  As if I’ll ever forget that date.

                  And now the lantern is home, nestled in one of our mini shrines.  They suggested we take it to the cemetery, but things disappear from the grave so regularly, that didn’t seem like a good idea.  And, again, it’s so much fuss for a little piece of glass I don’t think I ever visited in the five years since he died.  Whenever I go to the hospice, I try to see his rock and I’m now making weekly trips to his grave.  But the lantern?  I’d almost forgotten it was there until it became time to sort it out.

                  At least we have a nicely painted rock now.  You probably don’t get through this kind of thing unless you have a rock.

                  And, in a final piece of good news, after going around and around with charities and hospitals, it finally dawned on me to just ask the doctor at the hospice if she had a use for Colin’s old medical backpack.  She emailed back within the day and took it off my hands (well, I delivered it on the day when we went up for the rock and the lantern), so there’s at least been that bit of progress.

                  Meanwhile, the stack of his bills from 2016 sits there and I haven’t quite figured out a place for them yet.  Christina says to just put it in a folder, which I’ll obviously do.  But then I have to put the folder somewhere where I’ll remember what it is without it constantly reminding me of what it is.  As always, these things are tricky.  But, at least this time, I can report some progress.

            What gets to me about the grief is that there are so many aspects of it that I can see coming from a mile away and if I was just capable of changing my behavior – crossing to the other side of the street or just not insisting on having things just so – I could probably avoid this bad moment or the other.

            But does the grief win then, if you have to change yourself to avoid it?  What’s worse – a moment of remembering or becoming someone entirely different.  Which is, of course, assuming that I haven’t become someone entirely different.  Then there would probably be the counterargument that we all change every day.  The Niels that was here on Sunday is not the same Niels that is here today as I write this, because time and life have moved on and they have left their mark on me.  They recognize each other; but they’re not identical.

            So, I change, and the grief stays the same and we still run into one another.

            Which brings me to my current conflict with my anal-retentive tendencies.  Because, at the start of every year, I pull down old file folders from 8-9 years ago and shred the documents, because who needs IKEA bills that are older than 8-9 years old?  And before anyone argues that you probably don’t need the newer ones either, I’ll suggest you file your documents your way and I’ll file mine my way: stuff 2-3 years old in the home office with me; stuff 4-8 years old in the attic and everything older (unless we decide it has to be held permanently, which is a whole different story and filing system and, really, it’s time you stopped trying to judge or understand it) goes in the shredder.

            And that’s been working fine for me for ages, except for the year I broke the shredder in my zeal. 

            Except this year’s shredding project is 2016.  That means the year Colin first got diagnosed.  That means a stack of medical bills and documents an inch thick. 

            The good news, I suppose, is that we decided to hold on to those a while longer, so there’s less shredding to be done this year.  The bad news is that I’ve now got a stack of medical documents to figure out what to do with.  I don’t want to leave them out in the open.  Not because I have a jump scare every time I see them, just because it doesn’t feel like something I need to have lying here.  But I can’t just file them away forever and ever where they’ll never be found again, because that will mean rummaging through old forgotten papers one day and then there will be a jump scare when we find Colin’s first cancer diagnosis.  How to hide something so well you don’t see it every day, but not so well that you lose it.  I’m still working on it.  And I know it’s a stupid problem and, as dead children issues go, a first world one, but it still nags at me.

            And it’s at least a problem that feels, I don’t know, civil?  Because, I’m also having my rage fits again.  And not to get too political, those haven’t hit me as bad since the last time the current president was in the White House.  I’m not going to get into whether he’s a good president or not here or politics at all.  All I know is that there is one man who seems to get exactly what he wants and successfully avoids multiple legal persecutions.  And then there’s another man with a dead son and a broken upstairs toilet and a stack of medical papers and you really start to wonder when fairness was handed out in the universe.  I mean, hell, what about Colin?  He got five years, one of them fairly miserable, and other get to make billions selling meme coins.  You really stop understanding the universe after a while.

            So, we’ll focus on the good.  Christina had her first post-therapy mammogram and everyone is happy with the results, so that’s good.  We finally cashed in a birthday gift I gave her years ago and went to an escape room this weekend – all four of us – and re-enacted an escape from East Germany to the West.  Mostly Emma and Christina saved us.  I was almost useless until the last moment, when my encyclopedic knowledge of 80s music came in handy for once.  We’re taking a little trip as a family this weekend, so we’ll be out of town for Colin’s birthday for a change, but I think it will be good for us.  And sometime after I get back, I’ll figure out what to do with these papers.

                  As I’m writing this, it’s another New Year’s of me sitting next to the dog while he hides on his blanket and curses whomever discovered fireworks.  It’s our third year into this deal, and I think we’re into a routine.  We spend about three days before New Year’s with him becoming increasingly nervous about going outside, since the noise-making kind of kicks into high gear already on December 27/28.  The night of December 30 we only make it to the corner, because that’s as far as he’s willing to risk his life to pee.  And then, on New Year’s Eve, I take him on this gigantic walk behind this abandoned airport near our house so he gets in all his exercise and hopefully relieves himself because, once I get him into the house around 4 p.m., he’s not going to poke his nose out the door again until about 5 a.m. on New Year’s Day, probably not even if the house is on fire.

                  So, here we sit and it seems as good a time to blog as any.  As usual, once I sit down to write, the few ideas I had about what to comment on fly from my brain.  Part of that is a function of me having fewer things to say.  Being the father of a dead child is just what I do now.  It’s harder to experience something that shocks me enough to rekindle the initial gloom of 2019 (which is probably a good thing).  I’m not saying there isn’t gloom.  I’m just saying that it’s now such a regular part of my day that it takes a lot to make it register.

                  Which isn’t to say there aren’t moments.  Like, having lunch with colleagues a few months ago, we were talking about Knut, this baby polar bear who became a media sensation at Berlin’s zoo almost 20 years ago.  You couldn’t escape this bear if you turned on the TV or opened a newspaper for about two years straight.  So, that came up while we were talking to an out-of-town colleague about weird Berlin things.  And it came up that part of the fame was linked to this trainer who essentially lived with Knut from birth.  But the trainer died, at only 44, in 2008.  And then, Knut died in 2011, of a brain tumor, we were told.

                  Which isn’t quite true.  From an exhaustive search on Wikipedia, I see that the bear died of some kind of brain infection, not cancer.  But it wasn’t like I knew this to debate the point there at the lunch.  And besides, the issue was when the bear’s brain cancer came up, a colleague half-joked that maybe Knut developed the brain cancer because he was so sad about his trainer’s death.

                  Sigh.  I barely know her.  I know I’ve told her I have a dead child, but I have no idea if she knows it was a brain tumor that did it.  And, even if I told her, I wouldn’t expect her to remember that more than half a year later after I told her.  But still, there’s that moment when you want to jump up and say “That’s now how it works!” before you realize you’d only cause a scene and make everyone feel awful.  So you sit and keep at your lunch and just think “Yep, that’s my life now.”

                  And, as always happens, I remember things as I begin to type.  Christina is in the midst of a correspondence with the hospice right now.  When we moved into the hospice in 2019, one of the first things they had us do was build a lantern.  It wasn’t much more than a baby food jar with decorations glued to it.  The deal is, every child gets one and it’s hung by their door while they’re receiving care there.  For the kids who come and go – there’s a lot of business in the hospice taking the kids for a week here or there so their families can have a vacation without all the stresses of caring for a special-needs child – it makes a certain sense.  You show up, you have your lantern by your door.  And, when you leave, it goes back to hang in this room off the garden entrance.  The walls are painted to look like a tree, so you have the illusion that dozens, maybe hundreds, of these jars are hanging from the tree.  Your jar always goes back to the same spot, so you can pick it up when you arrive and put it back when you leave.

                  It never made as much sense with Colin, since he was on a one-way ticket when we arrived.  But his lantern was there at his door the whole time he was receiving care there and then, when he died, it was taken down to the tree/waiting room.  We were told it was now going to be there permanently, along with the other permanent lanterns of kids who are dead, and next to those that rotated up and down as kids came and went.

                  Except, a few weeks ago, we got a notice that they were redoing the room and they were going to take down all the lanterns.  It doesn’t sound like they’re going to put them back up.  At the very least, we were told to come pick up Colin’s lantern.

                  It’s not that we don’t want it.  It’s just that we want it there.  I can’t quite tell you why.  We don’t visit the hospice all that often.  It’s almost an hour’s drive.  And, when I do go there for the men’s group meetings, I usually head to the pond to see his rock (which I have to repaint soon, in another project I’ve got to coordinate with the hospice), so I honestly hadn’t seen the lantern in years. 

                  But I still liked having it there.  And now it feels like someone wants to rip out my fingernails when they say they don’t want it there any more.

                  I mean, on the plus side, it’s good to know that the heartstrings can still be plucked there and that I haven’t gone completely emotionally dead.  But that’s cold comfort.  I could live without it.  I suppose we’ll have to call them in the next few days to find out what’s up.

                  In good news, I spent the time between breakfast and Murphy’s destress walk going through our finances and finally managed to pay off our final chemo/immunotherapy bill.  I’m sure other bills regarding Christina’s cancer treatment are still working our way to us, but none of them are for chemotherapy or immunotherapy, so that’s something.  And, for anyone who doesn’t know, her treatment is done for now and she’s even returned to work, which gives me a great way to end a blog entry on a happy note for a change.

                  I should have written this weeks ago, but things happen.  I did worry a tiny bit about whether writing this up would betray any confidences, but I’m a good enough of a writer that I can keep everyone else out of this.  I suppose the main issue was that I had shifted my attention to a piece I wrote for Medium about finding a home for Colin’s backpack, a mission that I am still on.  And then there was our vacation for fall break and our usual Halloween super scary haunted house (OK, “haunted carport”), which took some time.

                  And then there’s always the fact that these things take a certain amount of energy to write.  I cannot stress enough how things just take it out of me.  Then again, everything does.  Those who know me will not be surprised to hear that I was weighed down by a lot of this week’s political news.  At one point, I found myself thinking that, at least during the last time this happened, I had Colin’s cancer and death to distract me from what was going on.  Talk about cold comfort.  This time I get to watch with no distractions, though I will not promise sobriety.

                  Anyways, the point is that I finally went away for a weekend retreat with the men’s group from the hospice.  It’s something I’ve thought about for years now.  They usually go in October and, in 2019, the leader of the group said that Colin’s death was too fresh and that I wasn’t ready for this kind of weekend, with which I wholeheartedly agreed.  And then 2020-22 came along and there was that pandemic.  I’m not even certain the trips happened all of those years, but I was probably not in a place where I was ready to spend time locked away with strangers.  I would have gone last year, but Christina had just gotten her cancer diagnosis, and I was not prepared to dash away for a weekend.

                  So this year came along and I say yes.  Which is how I came to be one of the last people to show up at the hospice – no matter how much time I allow myself, I’m always one of the last people to show up for things there – to meet up with a group of eight guys to go off somewhere outside Berlin and talk a whole lot about the experience of being the father of a dead child.

                  Obviously, it was depressing.  You think your story is the worst in the world and along comes someone else with something just as awful.  Or maybe a little more awful.  Or maybe a little less.  It’s hard to sort the degrees.  But they all end with a dead child.

                  Anyways, those stories are not mine to tell.

                  One thing that surprised me were the memories.  As all of the other guys told their stories, details of Colin’s sickness, deterioration and hospitalizations came back to me … things I haven’t thought of in years.  For example, after we got him into the hospice in 2019, there were a handful of times when he would lie there with his face frozen in an expression of terror.  If anyone was due to feel terrified just then, it was Colin, but it only happened a few times and we could not figure out what it meant.  Pain?  Fear?  We never knew how much he understood of what was happening to him.  And he was getting pain medications.  And yet he would lie there, terror etched on his face and there was nothing we could do.  Except hope it wouldn’t come again.  Except hoping it would come again kind of meant hoping he would die, which we didn’t want.  Except we knew it was going to happen, so we just wanted the most painless death possible.  And that would mean no expressions of horror.  God, I had forgotten all about that.

                  I think my main takeaway – and I freely admit that this might be the wrong thing to get, but so many of my reactions feel off since 2019, like I’ve become trapped in the psyche of someone who can’t quite understand what appropriate reactions are any more – is that it helped to compare myself to the others.  And not in terms of which story was more awful or whose child suffered most or anything like that, but in the sense of how each of us copes.  And some guys seem to have ridden through to the other side and are living a normal life.  And some people are very much caught up in the what-ifs and whys.  And I’m sure a lot of that has to do with how much time has passed since the death and how close the relationship was and what kind of constitution the father has, but there are differences.  And you can’t help but rank yourself a little bit.  Like, I’m more messed up than that guy, but I’ve got my act way better together than this other guy.

                  It’s not scientific.  It’s probably not accurate.  Some people let down a lot of their shields on a weekend like that.  Some probably put theirs way up.  You probably don’t get a true sense of how they’re doing.  How could you, when you’re not even sure how you’re doing?  But it is a strange consolation: I’m handling my son’s death better than so-and-so is handling the death of his child.  Of course then, if you think about that too long, you feel like a miscreant for being able to get over the death so easily.  So, there’s really no winning.

                  But that’s what the weekend was like for me.  I haven’t decided if I’m doing another one.  Going through it all in my foreign language is exhausting.  At one point, people said I should speak more.  I said I thought I had said enough when, in reality, it was just so torturous to say anything else in my second language.  I’ve heard about online groups and maybe I’ll think about zooming in and seeing if there are groups for bereaved dads where I can speak English.  Maybe it will be good for me.  Maybe not.

                  On at least one happy note, the weekend included a visit to a town for lunch, where we happened upon a church that was hosting an accordion choir performing rock standards.  There’s spending a weekend thinking about your dead son and then there’s a weekend thinking about your dead son where you happen to stumble across an accordion group performing Queen’s “We Will Rock You.”  I suppose the real lesson is that you have to learn to make the best of whatever situation you’re handed.

            I suppose it’s a sign of growth that I barely ever write these things any more, though I do feel that I’m letting Colin down by not keeping this up.  There was a time when I was going to become active in the grieving community and man workshops that helped other grievers come through to the other side.  Instead, five years out, I’m barely keeping his blog running.  Mostly it just accumulates impressive spam.

            Then again, I’m visiting his grave almost every week and reading to him, so perhaps I’m just finding ways to keep things going, just not so publicly.  That’s probably also healthy.  Plus, now that we’re finished with the first Hardy Boys story, we’re now trying the first Nancy Drew story, mostly because I couldn’t find the book I actually wanted to read in the wreckage of Emma’s bedroom.  

            What’s really on my mind is that it’s been almost five years.  Yes – on September 17, it will be five years without him.

            That seems like something that should be noted.  Plus, because of the way fate works, it will be the first time I’ve marked an anniversary of his death alone.  I mean, not alone alone.  The kids will be here.  So will Murphy.  But Christina left for her cancer rehab this week and is not due back for a few weeks.  I don’t begrudge her any of it.  She needs the rehab, both physically and mentally, and this was the best time to do it, given the vacations we want to take this year.  But the fact remains that I will be the only parent here when September 17 rolls around this year and I’m not quite sure what to do with it.  Christina has always been the one who takes care of the grave.  Yes, I show up and read to him once a week, but there’s some block that keeps me from doing much of the actual tending.  It took me years to come to terms with the grave’s existence.  Being asked to keep plants growing where my son is dead is too much of a jump on some levels.

            I went to the men’s group at the hospice last week for the first time in months and mentioned my solo Death Day plans.  One of the guys pointed out that this Death Day would mean Colin had been dead as many years as he had been alive.  I couldn’t work up much more than a “huh” to that, because I had truly never thought of it that way.  Then again, he said some relative had calculated that his dead child had lived 1,111 days, so maybe they’re just a numbers-focused family.

            Of course, if you do the numbers right, Colin was five years, seven months and 13 days old when he died, so I suppose we don’t get to the halfway point properly until April 30 next year, but that gets too complicated to think about.  I try not to think about details like that, because I’ve found life comes up and whacks you with memories whether you like them or not.  I read once about the wisdom of focusing too much on trigger warnings because, well, isn’t everything a potential trigger warning?  I mean, yesterday I saw an empty kids’ swing in a yard and that was enough to prompt a flood of memories for me.  So, I guess I’d have to agree.  Why bother trying to avoid triggers if anything is a potential trigger?

            And I guess that’s what September 17 is now.  It’s just another trigger.  But at least not every trigger prompts a blog entry from me any more.  I roll with it.  I even enjoy the memories of the good times sometimes.  Emma recently told me that she barely has any memories of 2019, and I do get that.  But I do remember from time to time that we managed to keep something like a family life going through all of the awful things that accompanied 2018-19.  And maybe that’s what I need to be focused on remembering.

            So, September 17 will come.  And then April 30 will come.  And they’ll keep coming.  And I’ll keep reading stories to him and, I suppose, one day I’ll write the last blog entry that will appear here.  But I don’t think that’s today. 

                  I’m crashing into this nexus, where I often feel I’ve said everything one possibly could about Colin and how I’m dealing with it, but still feel that I should write something every now and then … if for no other reason that it gives me an excuse to clean out the spam notes that pile up in my absence – there’s a pancake restaurant in Munich; and some people think I need a better web design (they have one for sale!); “very interesting, but nothing sensible,” reports Andrew Dep; there’s random comments in Cyrillic that, for all I know, are incredibly empathetic; and whoever runs the Chaturbate sex cam service – neither Colin nor I are interested in what you’re selling. 

Also, I kind of left the ball hanging after I reported Christina was going into surgery.  Apologies.  The week after she got home was tiring, followed by a weekend of a sick dog and then, for good measure, a few days where I was laid low.

                  But we’re all better now.  Christina got back from the hospital with no major incident.  And a few days later, the biopsy results came back with no sign of cancer anywhere.  Really, it feels like the only better option would have been not to have cancer in the first place.  But it weighs on us.  We know cancer can go badly.  We know that getting rid of it once doesn’t mean we’re free of its shadow.  We know, we know, we know.  But we just keep going on.  Healing from the surgery has taken some time: Christina’s arm was limited in its range of use for a long time afterwards.  And now we’ve got to get ready for radiation (expected to start at the end of the month) and then see if she’s going to go away for rehab or not.

                  And it all keeps hitting you when you least expect it.  You think your wife is doing great, and then she has a bad moment and you realize this is going to be with us for a while.  You think you’re doing OK with Colin’s absence and then you find yourself walking behind a 5-year-old boy – it’s never the age he would be that gets me in the gut, but seeing someone the age he was in his last year – and I wonder how this kid is doing and, if he’s doing OK, why mine couldn’t be as well.  It’s taking a weekend trip to Stralsund and bringing along some of your writing to work on during the train ride, only to realize that the folder you grabbed to hold your papers was one of his old medical folders, clearly labelled with his name and date of birth, and you can’t believe you didn’t know that or realized you had that and now you’re just using it for some stories you’re writing.  But what are you supposed to do?  Enshrine every little thing?  It’s a folder.  It’s supposed to hold papers. 

                  But it was his folder.

                  Emma is getting confirmed in about six weeks.  That means going to church from time to time.  I was always the churchiest member of our little family.  I went semi-regularly for a lot of my 20s and 30s.  It kind of stopped when we had kids.  Disappearing for 2-3 hours to get to the English-language services would have been an excellent mental break for me, but would have been kind of crummy for Christina.  And German-language services just wash over me.  So, I’ve gotten out of the habit.  But Emma has to go from time to time and it seems a good idea for someone to accompany.  And with Christina recovering from everything, it falls to me.

                  I really thought it wouldn’t be a big deal.  But then some of the call and response prayers started, and they were about interdictions for sick people.  And I started thinking about all the prayers I had performed down through the years and how those had all come to naught.  And we were praying for some other people?  All I could think of was standing up and saying “There are no guarantees, people.”  But I’m aware enough to know that would go down badly.

                  But then I started thinking about what the church had or had not done for us during Colin’s illness and, I suppose, there’s no way the church would ever not come up short.  But I still started getting mad about that.

                  I mean, you have to understand, I’ve never thought of God as a wish machine.  But I’ve always had a certain respect for him because, well, he created everything in my world view.  But if you start to think about how he gave us everything, then it sort of follows that he can also take everything (or at least not prevent it from being taken).  And that takes you down some pretty dark paths.  All I know is I never sat and prayed for this thing or that thing, because I knew it didn’t work that way.  But this day, I found myself praying and actually getting angry with God.  Like, God, I require answer.  God, I think you owe it to me to make sense of this.

                  I was not raised to speak to God this way.  It feels a little dangerous.  Especially in church.  Like, what a place to get smitten.

                  It also didn’t help that it also came back to me how much I detest most Christian music. 

                  So, it was not a good church visit.  And I left the church feeling way more distressed than I ever thought.  Of course, there was a social afterwards and a few friends asked how I was doing.  And it’s not like you can answer “Oh, I just had an existential crisis about my relationship with God and the way he failed to save my son,” but I didn’t have any good fibs prepared either.  All I know is that, later, I went walking with Murphy and had my music in.  “A Day in the Life” by the Beatles came up and I felt like I had a much more religious experience with that than anything that came out of church.

                  So, there are still some bumps in the road.  But we’re working on it.  Christina is going to go to chemo.  Emma is going to get confirmed.  Murphy is probably not going to learn to avoid eating gross things off the ground that wreck his digestive system.  I’ll probably go to church again.  I’m just going to have to brace myself a little better before I go.  Then again, for about five years now, I’ve often been reminded how important it is to brace myself for things.

                  And it does get easier on some levels.  A few weeks ago, a new colleague started and saw a picture from 2015 of all five of us.  “You have three kids?” she asked.  Without thinking, I said “Well two, the youngest is dead.”  A few years ago I would have agonized about what that answer would have done to her.  I don’t know if it’s better, but now I figure people just have to deal with the truth.  And the truth is we’re all still coping and trying to survive and learning how to sit through Mass, even if it means Christian music and reminders of what could have been.

P.S. The photo is from his baptism. It seemed appropriate.

                  I’ve started going to the cemetery.

                  I want to tack on an “again” there, but that would be fibbing, since I almost never went there voluntarily from 2019 until about a few weeks ago.  Christina will get all of us there on Colin’s birthday and major holidays like Christmas and New Year’s.  Every now and then she’ll have just the two of us go so we can do a little weeding.  But by myself?  It just didn’t happen.  I mean, I would take the dog on walks all the way around the cemetery, but I did not go into the cemetery.

                  I could not tell you what changed.  There was from one day to the next a sense of “I should go there.”  The few times I had gone in the last four years, I tended to take a book to read to him.  Usually one of his favorites, in the vein of Curious George or Dr. Seuss.  That’s what I took the first time I went, a few weeks ago. 

                  But this time, the children’s book didn’t feel quite right.  I’ll admit, there was also the logistical issue that children’s books are often a larger format, meaning I can’t easily fit them into a pocket of my fleece or coat.  But I found myself sitting there reading about Solla-Sollew and noticing that Colin’s 10^th birthday had just passed.  And would I have read this book to Emma or Noah when they were 10?  Hardly.  So I went back to the bookshelf and found a Hardy Boys book I had brought back for the kids from a trip to the States years ago.

                  The book had gone down like a lead balloon when I first presented it to Noah.  He could read English even back then, but the 1950s English – ‘On the double!’ Joe cried as they started up the steep embankment – with all of its references to jalopies and hot rods was impenetrable for him.  I never followed up on it.  So the book sat on a shelf until a few weeks ago.

                  I’ll admit, I’ve forgotten more about the Hardy Boys than I knew.  Or maybe, since this is the first book in the series, the line-up of supporting characters changed for the later stories.  I’d like to think that, if I had regularly read stories with an Oscar Smuff appearing, I would have remembered the character’s name.  But the chapters are short and easy to read and I feel it’s something I can do for him.  Murphy doesn’t seem to mind tagging along.  And, at this point, I kind of want to know who stole Chet’s faithful jalopy, which he named Queen.

                  It feels like I’ve had a shift.  I’m not saying I don’t grieve my dead son, but the grief is less ‘sad’ and more just a fact of my existence.  I’m tall.  I’m a journalist.  I have a dead son.  These are just true things that I can rattle off about myself.  Then again, we watched “Inception” the other night and the idea of being stuck in a dream where Colin was still alive didn’t sound all that bad to me.

                  And it still sneaks up on you.  A few days ago I was talking to a friend whose wife went through a similar cancer therapy to Christina’s (last chemo is Tuesday!).  I was just curious about how long it took her hair to grow back, because I was curious and wanted a reference.  We discussed it a little until I realized I don’t need a reference.  I know exactly how fast hair grows back after chemotherapy.  I have pictures and pictures of Colin through those months, his head going from peach fuzzy to full-blown moppet.  I guess I had forgotten.  Just like I’ve forgotten what’s going to happen to the Hardy Boys as they track down the Tower Treasure.

                  Having him around would be better.  That goes without saying.  And I can’t say I’m glad about the current situation.  But it’s better than nothing to find some comfort reading Hardy Boys at his grave with the dog.

            Beyond the blog (and updates about Christina … who’s doing better, but is still going to be in the hospital for a few nights) I’m still working on my fiction writing goals.  As such, I’m going through a book I wrote about two years ago. 

            I had written everything down while Colin was dying – from the awful first intake lady at the hospital to the nightmares of the home health care work – and had actually sent that around to a few people.  But no one knew what to do with it.  I mean, fair enough.  Who wants to publish a story about someone being sad about their son’s death?  I’m no celebrity.  No one outside of my circle of friends is terribly interested in this.

          So, I cheated a little bit and wrote a fictionalized story about a man going a little bit nuts after his son’s death.  I’m not sure what to do with it, because it starts off a little rough but, man, when I get to the part where the son dies… Suffice to say, I had those memories clear in my head.  I had forgotten what I wrote, but reading it again hit me pretty hard.  Not every detail was straight from Colin’s death, but a lot of it was.  And it upset me.

            Which would have just been another day in my life – I mean, “Duh Niels, if you write about your son’s death that is, of course, going to be upsetting – except I was also working on my annual filing project on the side.  I pull together all of the documents we need for our tax return at the beginning of the year and hand it off to Christina so she can then crunch the numbers.  And I don’t know why this didn’t occur to me in 2020, 2021, 2022 or 2023, but I pulled out our accident insurance policy and noticed that we were still insured for all three children.  I called the insurance company and double-checked and, yep, we’ve been paying an extra 100 euros or so a year since 2020 to make sure my dead son doesn’t come over to your house and break things (or maybe that’s a different kind of insurance; there are so many kinds to have in Germany).

            You could tell the guy I had on the phone was not ready for how calm I was talking about my dead son – no one ever is – but he handled it well.  All I had to do was pull out a copy of my son’s death certificate and scan it in and they would take care of it.  I might not get all the money back, but at least we’ll stop paying for Colin to stop having mishaps.

            All I had to do was pull out his death certificate.  God.

            I don’t suppose I actively avoid looking at it, but God, it’s not like I want to stare at it.  And then I still have a permanent section for him in our family file, with his old passports and his birth certificate.  There are unused passport photos.  It’s like he has a whole life waiting there just to pick up when he decides to roll back through and go backpacking to Argentina or what-not.  We have small shrines to him all over the house, so it’s not like I never see pictures of him.  But I hadn’t looked at this stuff for a while – and I had just been reading about the death of a boy very much like him – and it hit me hard.

            He’s gone.  I know this.  And yet he still keeps lingering.  And I keep worrying he won’t be around once we forget him.  And I don’t plan on forgetting him.  But one day I’ll have an accident, or I’ll just die and then a large chunk of the memories of him will just vanish.

            We were talking about relatives during the school holidays.  Somehow my kids had no idea my Dad was the youngest of nine.  Oh yes, I assured him.  He had eight siblings.  And then I stopped, and in an offhand way noted that he had a few more, because I knew there had been stillbirths and kids who died as infants, but no one remembered them.

            That’s true.  Everyone from my Dad’s generation is dead.  Maybe some of my older cousins remember a story about a dead sibling here or there, but they’re more memories of memories at this point.  And I said it in such an offhanded way.  Like, yes, once there were people and now there aren’t any.  And that’s what I worry so much about happening to Colin.  But I can’t do much about it.  Except I write, and hope that maybe that will be enough.

            I wish I had done more for him.  I keep thinking about the Dad from the hospice who is moving heaven and earth to keep his son with the disability here and in this world, despite so many diagnoses that the kid should be dead.  I don’t really believe it, but it always makes me think I should have maybe fought more for Colin.  But I know that’s not true.  He’s fighting a really debilitating disorder.  That’s hard.  We were fighting a brain stem tumor.  We never had a chance.

            Maybe he will if I keep writing.  Maybe he will if I keep finding documents about him.  Somehow or another, I have to fight this my way.