Five Minus One

                  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.

            I’ve had a lot of unbidden memories lately.  It’s weird, because every time I think that I’ve reached a point where “Oh yes, being the father of a dead child is just what I do,” something comes along and hits me hard.  I suppose, right now, part of it is a side effect of living with Christina’s cancer.  I suppose some of it is that we might have just had a wave of Covid wash through the house (or it might have exclusively gotten me, the signs are unclear).  Or I suppose it might just have something to do with being the father of a dead child.

            A week or so I was coming home with Murphy and I started thinking about Christmas.  It was easy to think about Christmas for the first two weeks of December, since we had unseasonable cold and snowfall.  Usually we don’t get snow – if we get any – until February or so.  This year we had nearly two weeks of sub-zero, icy weather.  It was kind of nice, except for the part where you risked your life every time you got on a bicycle.  And I was getting home and thinking something about Christmas, and maybe my current attack of Covid had already begun, and I just wondered if this was going to land Christina in the hospital.

            And then I remembered Colin in the hospital.  Specifically, I remembered him in the hospital on Christmas Eve, 2018.  He had gone in right at the start of the month – never really got to open his Advent calendar that year, never really got any of the pre-Christmas fun, except for seeing that one inflatable Santa on the way to day care, which was all the more of a pity because it turned out to be his last Christmas – and was still in the ICU for the holiday.  We split it up, so I spent the bulk of Christmas Eve there with him and then we switched in the middle of the night so I could be home for Christmas Day.  The German parent got to celebrate the German Christmas festival with the other two, the American parent got the American Christmas festival.  It’s so depressing how you have to get so practical with these things.

            He slept most of the time.  Towards evening he woke up a little, and we had one of his gifts there in the room in case.  It was a smallish Lego set which, in retrospect, is such a stupid thing to give to a kid in the ICU.  How was he going to play with it?  But he loved Ninjago and so we had a little set for him.  And I think he was excited to see the gift, but he was so out of it, it was hard to tell.  And he tried to open it but he could barely move his hands with all the tubes and wires, so I helped him.  And we looked at it.  I might have even built it for him.  But God, that’s not the way Christmas is supposed to be.

            I’ve barely thought about that in the five years since that night.  And then, in front of my house, it came right back to me.  I hate those memories.  More to the point, I don’t understand why the good memories don’t come up unbidden like that.  Facebook tries to help.  A few days ago it delivered the picture of him from when he climbed in the clothes dryer.  It’s a great picture, but I have zero memories of the event.  If it wasn’t for the fact that I photographed it and Facebook throws it back out into the world from time to time, I would not remember it.

            I didn’t expressly wonder what it would be like if Christina ends up in the hospital for Christmas.  There’s no reason to think she will.  The most recent ultrasound shows that the tumor is, functionally, gone.  She still needs to go through all the chemo and radiation that was planned for her, but they seem to have gotten the tumor.  And yet there’s this fear in my head that cancer = tragic Christmas.

            And it’s not like the Facebook memories are all great.  I took a screenshot of the one of those Then and Now memories Facebook likes to serve up from time to time (it’s actually the one at the top of this blog) and it was all I could do not to run to the cemetery and take a shot of the gravestone and send it back to Facebook with a “That’s how it’s going.  You happy now!”  Knowing full well this is just an algorithm doing its thing, not an actual ploy from Marc Zuckerberg to rub salt in my wounds.

            But it keeps hurting so much.  I keep thinking that it’s supposed to feel normal.  That I’m not supposed to be in – I wouldn’t call it constant – but recurring pain.  That other people have lost loved one and they learn to cope somehow.  And I’ve learned to cope.  I just don’t think it will ever feel normal.  Because it keeps surprising me.

            I was texting with Ricardo yesterday and it dawned on me that it would make sense if we set up a group with him, me and Christina, so I don’t have to keep running between the two of them to get things sorted out.  I went to create it and found there was one there already.  We just hadn’t used it since 2019.  When Colin was in the hospice.  The last exchanges are a long series of Ricardo trying to get back into the building with the children after closing hours.  I can imagine why I didn’t want to look at that group any more.  Then again, it would be helpful to have a chats with him and Christina simultaneously. 

            I want a restart.  I want a mind wipe.  Except I really don’t.  I want to be able to control the memories.  But I can’t. 

            The guy I mentioned last time at the dad’s group still haunts me.  He’s putting so much effort into keeping his son alive.  It keeps making me wonder if I could have done more.  Maybe we should have popped him onto a plane and flown to Boston or Zurich or wherever the one doctor in the world is who could have sliced that damned tumor out of his neck.  But I don’t think that doctor exists.  So all I’ve got it a head of memories in the wrong order and various machines that serve them up to me when I’m not expecting them.

            I think, once the Covid is gone and we get a two-week break from Christina’s chemo, I’ll feel better.  I think once I’m off work for about two weeks, I’ll feel better.  Once I can sit down in my living room without a mask and with the remains of my family and have a beer while watching “Scrooged” or “A Christmas Story,” I’ll feel better.  I’ll never feel 100% right, I’m starting to realize, but I can keep hoping that every day will be a little better.  I mean, if you look at it from the right Christian perspective – and it’s dark – every day gets me one day closer to seeing him again, which is what I believe.  I don’t think it’s how you’re meant to move through life.  But it’s what I’ve got to work with.

            As Christmas letters go, this has been pretty terrible, I do apologize.  I do get into the Christmas spirit when I’m away from the blog.  And proper cards will go in the mail soon.  But if I don’t blog again this year, I thank all of you for reading and caring.  On into 2024.

            I had my first dream about Colin in ages.  Once it became clear in 2019 that he was dying, I assumed I would have this kind of dream all the time.  Instead, they’re very much a once-in-a-blue-moon kind of event.  This one wasn’t even interesting.  It mostly involved trying to watch some city council meeting on TV.  I think Christina and I had been involved in some kind of city beautification project.  And Colin really wanted to watch the show. 

            I mean, like any kid, he did love TV.  But there are limits and I’m not willing to believe that he would have watched a city council meeting.  Then again, the last thing he said to me before I woke up was “Oreo,” which seems pretty much in character.  I had been aware in the dream that he had almost died, but we had pulled him back from the edge.  I was grateful he was there.  And then I woke up calling out “Colin, come back.”

            I could use more dreams like that.

            Instead, I have a blog that is continuously spammed by Russian and Chinese bots and now, weird memories of Colin’s sickness dredged up by Christina’s current fight with breast cancer.

            I mean, if I don’t keep my brain busy, I keep going to strange places like “Maybe there was a deal, and we had to give up Colin so Christina could survive her therapy.”  As if you can negotiate with cancer.  Like God gives and takes like that.  And all the while, the blog keeps getting hit by bots. A few weeks ago, they were from a chain of American pancake restaurants in Munich.  Sometimes it’s a random word.  Sometimes it’s porn.  Sometimes it’s a chain of Russian or Mandarin I refuse to run through a translator.  And you kind of wonder if they’re mocking your loss, even if they are just bots.

            It’s been noted once or twice that this is a blog about dealing with Colin’s loss, so it is a bit weird that I’ve shoehorned Christina’s experience in here.  And part of that is pure laziness: I just don’t want to set up another blog.  But then there’s the point that I don’t want to have to set up a five-minus-two blog, because one was enough.

            One truly familiar trend has been the bills.  Oh my god, so many bills.  Some of them are for like 15 euros.  Some of them are for 15,000.  And yes, we live in a social democratic state with lots of safety nets.  We’re not going out of pocket for these bills.  At least not long-term.  But short-term … oy. 

            You see, because of the way Christina is insured, we get the bills sent to us.  We then submit them to insurance for reimbursement.  Sometimes the bills are due in 3-4 weeks.  Sometimes the reimbursement can take up to six weeks to arrive.  It’s like a never-ending shell game of moving money from here to there, deciding which bill not to pay just yet, etc. etc., in hopes of having enough money to get through the end of the month because, honestly, I’m no longer sure how much of the money in my account is mine and how much is spoken for by some pharmacy somewhere.  We’re not broke.  We’re just in perpetual financial upheaval.

            The one pharmacy in question is relentless.  I’m not sure why they’re billing us separately.  When Colin was sick, the bills for the medications came packaged with the hospital bills.  It all works out the same.  But I guess the pharmacy is getting nervous about sitting on about €24,000 that we owe them (even though none of the payments have been late, except for the one where I got a dispensation), so they’ve started doing weird things, like checking with the hospital to see if they might be able to talk us into signing a form giving them the right to automatically pull the money from our accounts.  Like, no.  The only way I know we have enough money for groceries right now is if I keep track of this and move money when I can.  Like, I have an Excel sheet set up for this … and I hate Excel. 

            And the insurance companies try.  There are two that reimburse us.  One is run by the government and is chronically understaffed.  The other is a private company, but they run their reimbursements through a computer.  And if you send them a bill that totals 15K, but is actually made up of two bills for €5,800, three for €250, two for €750 and another two for €600, it assumes there’s been some kind of repeat glitch, and only reimburses you for one of each amount.

            It’s all administrative.  It’s all understandable.  It’s all manageable.  But it’s all so much like the pile of bills we had to go through with Colin, trying to shuffle the mail from the house to the hospice to the payment system (it was all on paper then – at least I can photograph the bills with my phone now) and then running to a post office for a few minutes while someone else was watching Colin.

            Gah.  I hate so much about the fact that we have to go through this again.

            I went to the men’s group on Friday for the first time in an age. We were talking about the nightmare of home health care.  I mentioned that I knew one family who had tried to do it themselves and how I had no idea how they were coping.  Two minutes later, the kid’s father walked in and my heart sank.  I mean, why else would he be there if his kid wasn’t dead?  Turns out his son is alive, but he wanted to talk to people who had suffered through childhood deaths.  It’s not the first time a guy dealing with a fatal childhood situation just joined.  All I can say is that this man is making herculean efforts to keep his kid alive.  A few bills seems like a cake walk compared to that.  His explanation of his routine left me exhausted.  But I wish I was that exhausted, caring for a living child.  It feels like, with all those bills, you should have something for it.