Five Minus One

I suppose It’s normal behavior for kids in general and perhaps even more so around the holidays, but I’ve spent the last two weeks fielding a lot of questions like “Which of did the craziest things as a kid?” or “Which one of us was the easiest to put to bed?” That kind of thing. A lot of need to have the various children ranked in their own heads, so they can jot down in their mental notebooks which was the good one, which was the funny one, which was the difficult one, etc. etc. etc.

I get it. I think it’s kind of normal to know your role in the family (I was the perfect one, in case anyone’s wondering), the problem is – and I have told the children this, just not in a way that I think they truly understand – is that my memory has done a bit of a flush in the last few years. And maybe that’s also an attribute of being 50 now, but it feels more intense. Like, I have a memory of Noah at the top of the stairs the day Christina fell down the steps, pregnant with Colin, and broke her ankle. That’s seared into my brain. I have another clear memory of Emma and Noah bickering by the car outside our house. Noah had a small Playmobil toy and was pulling imaginary dust out of it that he was giving to everyone – me, the bushes, the car, the other toys – but not Emma, who was having kittens at being excluded.

And I don’t want to say I have no other memories of the two of them pre-2016. There are several more. But then came Colin’s birth in 2014, and that takes up a certain amount of mental real estate, and then came his diagnosis in 2016 and the bad news at the end of 2018 and his death in 2019 and I feel like so much of my memory was wiped. Who ate their vegetables? I have no idea. I remember more sneaking food in the kitchen because we didn’t know how to explain to Colin that he couldn’t eat solid food any more due to the trach. Who liked which story more? Most of my mental real estate now is tied up in the two or three stories Colin would let me read to him towards the end.

It’s unfair. The whole time Colin was sick, I felt bad that we were neglecting Emma and Noah, because what else could we do? And now he’s gone, and I don’t want to forget him, but so many of the bad memories are crowding my head, I feel like I might have jettisoned some really good memories in the process.

I guess that makes it all the more important to hold on to the good ones. Like, when Emma and Noah were about 5 and 3, I caught them in Emma’s room as I was heading out the door to work. It wasn’t immediately obvious they were doing anything bad … but then I noticed that each time they shifted their weight, their no-skid socks made ann odd “schwack, schwack” sound. I asked what that was and they told me that they had tried to glue their feet to the floor, which did explain noise. Hopefully (naively?) I said that surely they applied the glue up in Emma’s room. No, they told me, they had put the glue on in the living room, then walked through that room, through the hallway, up the stairs and into Emma’s room. And, as I looked down the stairs, I saw the trail of glue footprints confirming their story.

Sadly, I had to get to work, so I could leave the clean up to others.

I wish I had more stories like that. I wish I had more with the three of them doing silly things together, but Colin was still a toddler when he was diagnosed and then, it feels, like he was in a bubble for a lot of the next three years. His interactions with his siblings were so limited. His interactions with us seemed to consist so much of doctor’s runs and getting medicine in and finding ways to trick him into sitting still so we could get a little more life out of him.

There are times I wish we had never gotten the diagnosis in 2016 and we’d just gone on with our lives – we were planning to go to the States in the summer of 2016 – and then maybe he would have slipped away, and that would have been devastating, but we would have had normal family memories up until that point. And I know I don’t want that. I mean, the few times I’ve been at the bereaved Dad’s group, the guys who lost their kids unexpectedly are a whole different kind of mess than the people like me. They woke up and were missing a kid. I got two or three years to turn my head inside out while it happened. And maybe that’s not better, but I don’t think it’s worse either. It’s just the kind of loss you have.

Anyways, we tried to remember Colin as best as we could during the holidays. I might write a little more about memory soon. It’s as if my memories are working differently than normal these days. Maybe, if I try harder, I’ll be able to knock loose a few more stories for Emma and Noah about when they were kids. Maybe we’ll just have to concentrate on making the best memories we can from here on out. Maybe my memory is working just fine – does everyone remember everything about their kids? – but it all feels off because of what we went through. Maybe I’m still working on it.

A friend who’s actually inspired a fair number of these posts asked recently if I had ever looked into a kind of quiet Christmas, for people who can’t deal with the stress of Christmas for one reason or another.

It seems like a good idea. It seems like the kind of thing a lot of people could benefit from if they’ve gone through trauma. I can see it’s place in society. Yet it would never dawn on me to skip Christmas. Even given all the misery of the last few years – I mean, in 2018 we were in the hospital with him for all of December – Christmas has always managed to remain a highlight. We bounced right back in 2019, months after his death, and had a pretty decent Christmas. I mean, even in 2018, with the horror of having a kid in the ICU, we still had a good time, all of us enjoying the arrival of the taco dinosaurs, which I highly recommend.

And yet, and yet … there is something that gets to you as you approach another Christmas with a child missing. As always, it’s the little things.

The last word I ever remember him saying to me is “Weihnachtsmann,” which, to keep things simple, means “Santa Claus” (and for anyone who feels like opening a debate about the best translation of ‘Weihnachtsmann,’ I’m really not interested in having the discussion). It, of course, wasn’t the last thing he ever said to me, but communication with him became so hard once they put the damned trach in that you were usually laboring to figure out what he wanted, not taking time to savor the words.

So, this would have probably been on December 1, 2018, the day before he ended up in the hospital. I was pushing him in his stroller to day care – because he insisted on the stroller even though he was far too old and big for it – and we passed a senior citizen’s center that had put up a giant inflatable Santa on one of their balconies. They do it every year. And Colin turned around in his stroller, looked me right in the eye and said “Weihnachtsmann!” He knew Christmas was coming. I so wish we could have given him a halfway decent one. Instead we segued from that into a month of him and Christina in the hospital and a few weeks of me unable to do anything in the house because my back was out.

He really never spoke much. The people at day care had a story about the one time he said a whole sentence – telling some kid to put down a toy – because he just never spoke that much. And he seemed to understand everything we said, so we never figured out if he was just quiet or if this was some side effect of the tumor or the chemo or God knows what else he had to go through. So, having him turn around to me and say “Weihnachstmann” was kind of powerful, because not only was it a crystal clear word, but you knew exactly what he meant. You can pack a lot of meaning into that one word, especially when you’re 4.

Weihnachtsmann.

I’m sure we had more touching moments and instances where we communicated more or better, but this moment is etched into my brain. There was no way to imagine in that moment – and we’d been to the hospital multiple times in the previous three months due to his breathing problems – that it would be a little more than six months until he went to hospice and a little more than nine months before he died. Eight months from that moment, I was asking if there was any way we could speed up his death, because it was such hell watching him fade away like that.

We only had him five years but he keeps coloring our lives. I recycled a gift bag today while wrapping gifts and realized his name was still on the tag. Had to make sure to remove that fast before causing a Christmas morning faux pas. Emma’s computer died and I had it at a computer shop a few times in the last week. The bike ride took me by the cemetery so I stopped, even though I almost never go there. I brought a book to read to him and, as I left, I noted to myself that I had just read a story to my dead son. That’s not part of the usual Christmas routine. But I don’t know what else to do.

The senior home puts up their Santa every year, so I see it on the rare instances I go down that street. Like so many other things – young boys his age, the guest room, the cemetery – I avoid walking down the street that took us to the day care most of the time. But it’s not a bad place to walk. And they do have a really nice Santa on display.

Merry Christmas everyone.

My phone had something like a near-death experience last week and, for a while, it seemed that the only way to fix it would be to get rid of a large number of copies of photos and videos stored there. That didn’t actually help the phone problem, but it did force me to confront an issue I’ve been dancing around for nearly two years.

Pictures of Colin throw me a bit for a loop. We do have a handful of photos we have on permanent display in the kitchen, living room and hallway … and I’ve gotten used to those, even treating them a little bit like old friends. I smile at them when I see them and tell him hello. If someone in the household is giving me attitude, I might confer with him via his photo. Maybe he has an idea on how to deal with teenagers.

But I’m leery about looking at other photos of him. Christina will, from time to time, tell me that she’s found this or that photo that she’d forgotten she had and try to show it to me. As often as not, I’ll beg off. Photos are fine. Watching previously unseen video of him comes with this bittersweet reminder of there was everything he could have been, right there on Christina’s screen, whereas the fact that he’s not there is pretty much etched into every corner of our household.

I did manage to look at one a while ago. It must have been from 2017. He was in the backyard with Ricardo, who was showing him how water came out of the house. It couldn’t have been more than a minute, but there he was, in our backyard, getting his hands washed out of a house before scampering away. And then you look up into the real backyard and there’s no escaping it … there’s no Colin here.

The trip through my phone’s photo banks wasn’t so bad. Perhaps it was a good thing that I’d watched the video Christina had … the first video I’ve agreed to watch in a while. Perhaps that steeled me. But I kept noticing as the phone demanded I delete more to free up space, that I wasn’t willing to delete a single photo of Colin. And I’ve got backups of all of these photos on my laptop and a hard drive. The best ones are even printed out. So, deleting one of these images from my phone is not a big ask. And, at the same time, delete anything to do with Colin? Hell no.

But all the memories are tricky. At Thanksgiving, Ricardo told us how Colin would visit him in his room to listen to his music and then, sometimes, fall asleep wrapped in a blanket in front of the big window overlooking the back yard. I didn’t know any of my children were capable of peacefully drifting off to sleep, much less that this was something that happened with any regularity. I mean, of course, Ricardo had a whole relationship with Colin that didn’t involve me, but you also don’t expect to find out your dead pre-schooler had a whole schtick that he carried out without your ever knowing about it.

The memories are tricky. The kids are still much more prone to bring up Colin, and we can have a laugh at some old memories. And then they’ll go a step too far. Remember the time Colin got Emma in the face with the garden hose? General laughter. Can we talk about what kind of tumor he had? Stony silence. Remember how much he loved the Flash? Good memories. What would have happened to Colin if he were alive during the pandemic. Oh no, there is no way we’re having that conversation.

I suppose it’s the nature of this beast. Every time one thing starts feeling a little more normal, it opens up another chapter in the process that reminds you how off all of this is. But, for now, my phone is working again, and all the photos of Colin are still there. I just don’t look at them much.

We did our first Thanksgiving in years on Friday (having a dinner of those dimensions on a Thursday that’s not a holiday here in Germany is impractical).

There’s some debate about when our last Thanksgiving dinner was. I feel it was in 2017, when we were invited to a friend’s. Christina says we must have done one since, but I can’t see how. In 2018, we would have been too distracted by Colin’s mounting health problems and, in 2019, I don’t think any of us were in much of a mood to give thanks, just two months after his death. And I’m pretty sure the logistics of trying to organize a Thanksgiving dinner during the pandemic were too daunting for us in 2020.

But this year, in 2021, we’re old hands at negotiating pandemics and lockdowns and the new variant of the day. So, with a lot of prompting by Ricardo, we went ahead and did it.

And it was good. I mean, I don’t know many better cooks than Christina, so there was never anything to worry about from that angle. And the company was great. It was a pleasant evening.

Now, we were never one of those families that set aside time during Thanksgiving to take a moment to say what we’re thankful for. Being German, my Mom went through a lot of these US holidays always a little unsure of what was expected of her. And my Dad was happy to just sit an eat. So, there wasn’t a lot of this looking back at the year and thinking about what we wanted to say thank you for.

And yet I know this is done and, even if I’m not going to make a room full of Germans participate in a tradition my family didn’t have, it’s there in the back of my head. And I want to be grateful. We’ve stayed healthy, the four of us. It looks like Noah is going to Gymnasium (the university-track education). I turned 50 without major incident and fulfilled a years-long dream of coming into possession of a lawn-mowing robot. You can accentuate the positive without forcing it.

But it was still (if I’m right) our first Thanksgiving dinner without Colin. And that stung a little bit. In the three or four Thanksgivings we had him, he managed to form some memories. I mean, in 2016, when we had our Thanksgiving and we were in spitting distance of our last major round of chemotherapy and getting the heart catheter removed, we were thankful beyond words. I’m kind of surprised I didn’t force everyone present to play the “I’m thankful” game, we were so euphoric and certain that we had gotten through the nightmare with nothing but a few scars and a reminder to be grateful for life. But there are quieter moments. I remember Thanksgiving 2015 wrapping up and, as we were all clearing up the table, finding Colin clinking sippy cups with another little boy his age, just a couple of German 1-year-olds getting ready for the day when they’d be doing the same thing with beer glasses. It’s one of the more adorable memories I have of him, moreso because that was all him and the other kids. No one set him up to create a memory so perfect. No one coaxed him into the corner and put the cup in his hand. They just did it, and I was thankful in that moment to have such a wonderful child.

So, then you jump ahead to another year where Germany seems to have gotten just about everything wrong with the virus and now we’ve got a new variant threatening to shred our lives and force us to lock away for the next couple of months, the “I’m grateful” game is hard. I can do it. I can tell you things for which I’m grateful. But everything I say is paired with – at least in my head – a “but it would be better if Colin were here.”

I say this looking ahead to Christmas, which will be our third without him. In 2019, I think we were all still shellshocked to really grasp what a holiday without Colin meant. Last year we were all disoriented by Covid-19. Now I look ahead to a month from now and it’s dawning on me that, even if there wasn’t a killer virus stalking us, none of these holidays are going to feel quite the same. They’ll be good and they’ll be fun and – at least this year – the contents of the stockings are going to be spectacular. But it’s never going to be the same.

I won the family debate about where we should go on our vacation this autumn, mostly by default, because neither Christina nor Noah made a suggestion, and partially by luck, because the only other suggestion was the Baltic Sea and none of us felt particularly warmed by heading to a northern German sea in October. So, off we went to Heidelberg.

It’s where I grew up, so I was excited. Indeed, had I not been restrained, I would have dragged the family to my old elementary, middle and high schools, which were spread out across two different military facilities in the city, and then insisted upon seeing what was left of the military headquarters where my Dad worked, followed by a side trip to the former US shopping center, which, if you believe Google Maps, is now part of the University of Heidelberg. As it was, we had to make do with the Hauptstrasse, the castle, a walk through my old neighborhood and several emotional reunions with my old school bus stop, all of which I can recommend if you ever find yourself in Heidelberg (except, perhaps, the bus stop).

We were there almost a week and, because of logistics, almost every time we drove anywhere else, we had to go through Heidelberg first. It was on about the fourth trip through the city (and past my bus stop), that I remembered that, back in 2016, Heidelberg had been one of the proposed destinations for Colin to go and get his radiation therapy. I remember being excited at the time: “Required trip to my hometown” I thought, somehow thinking we’d be able to squeeze in a walk downtown in between radiation blasts. In the end, we ended up going to Essen, which had its own array of pros and cons.

So, as I sat at this stoplight, looking at the city, I wondered how I would feel about Heidelberg if this had been where Colin had ended up going on our futile mission to rid him of his cancer. I can’t imagine it would have turned me off the city forever, but it would have put a stain on the memory, to be sure. I mean, I can’t say I have any strong hatred for Essen, but I was only there three times, never for long. Christina seems to go back and forth. I’ve heard her talking about heading back to the region once or twice, but I imagine she’d want to keep a wide berth of the hospital complex.

The memories don’t work quite right any more. There are days where I can almost convince myself that the whole thing was a terrible movie I was forced to watch. That I never had a third child. That I, for some reason, forced myself to spend five years watching a terrible movie that ends with a child dying. But only almost. But parts of the memories are fading. I can’t remember his voice. His smell. I’ve idealized him in my mind into the child who almost made it, but never fussed or complained or misbehaved. But I only have to concentrate a little harder to remember that’s not true.

I wish it worked more like a technical manual, so I could pick it up and think about it when I was inclined to do so and not when I didn’t. Instead, the memories fade and then they’re jogged back to the front when I’m not remotely ready for them, when I wonder “what if” about Heidelberg or when I find out through Noah that Emma no longer listens to this one’s children’s story because it reminds her too much about Colin. Like when I’m working innocently, reading through the Press Association’s news wire and run across a story about a new treatment for juvenile brain tumors that is showing promise and I’m so glad I’m not in the office, because I froze for what felt like five minutes, though it was probably only half a minute. Because I didn’t know if the tumor they were talking about was the one Colin had, because I did everything I could not to know the specifics of his case, just wanting to be his Dad for as long as I could and not having to really ever 100% know what an embryonic tumor really was. Because what good would it have done if I’d known it’s cellular structure. I just knew that it was in the wrong place, in my son’s neck.

I’d like to have my memories work normally. I’d like them to work like they do with my parents, whom I remember mostly fondly, even if I make an occasional exception for my Mom’s oddities. I want to be happy when I remember him. Instead, every memory feels like an introduction to a mine field. Like, don’t take that step, because you might find something you can’t control. It might blow up and take all of you with it. But, at the same time, pushing the memories aside clearly doesn’t work, because they just pop up.

We experimented with watching Curious George a few weeks ago and it wasn’t as bad as I’d feared. Maybe I should just dive into it and watch old videos of him. Maybe I shouldn’t. I wish I knew.

This showed up right before we went on vacation and we still haven’t quite decided how to go about it.

In case you’re wondering, “this” is the stone angel. Wasn’t there the next-to-last time Christina went to the gravesite, was right there in the middle of things the next time she showed up.

First of all, if the person who placed it reads this blog, we want to say thank you for the gesture. Given that one of my biggest fears will be that Colin will be forgotten, it heartens me whenever I see that someone has been to the grave and left flowers or just spent some time with him. On the other hand, we’re not sure what to do with the angel. It’s not us. It certainly doesn’t feel like Colin. So, we certainly appreciate the act of leaving the angel for him, we don’t think we want the angel there. Colin was sweet and fun and a handful, but he wasn’t an angel. He’d want a bust of Superman or a Ninjago character or Lightning McQueen or Curious George. I can only imagine his reaction to an angel.

But this isn’t supposed to turn into a public service announcement of what people should leave at the grave and how. Heaven knows, adding decorations to the site is preferable to subtraction: We still wonder what happened to the glass bauble that disappeared a few months ago. I think, in all fairness, if something gets left there and it doesn’t 100% agree with us, we might just move it to the side. We don’t aim to hurt anyone’s feelings, just sometimes we put our feelings first when it comes to Colin.

No, I’m writing because the act of an unknown party leaving something for Colin really got me thinking again about the places where we remember him. I still remain unmotivated to go to the cemetery, to be honest, so it’s almost hypocritical of me to care whether there’s a stone angel there or not. Christina tries to go once a week, but it’s not for me to write how she feels about the place.

What did strike me is that we were at the hospice at the weekend for an event and, as I always do, I took a moment to visit his stone at the pond. It looked strange this time, because they’ve covered the pond with netting to keep off leaves. From a distance it looked as if it had been filled in. But, upon closer inspection, everything is as it should be. Indeed, some gardener came through and fought back a big-leafed plant that had been threatening to cover the stone entirely.

I went twice. Once by myself while Christina was still parking the car and once with Christina. I think, mostly, I was astounded by how little out of the ordinary I felt at the site. When I was on my own, I even made a point of moving from bridge near his rock to the benches where we would sit with him to see if that would spark a feeling. But there was nothing special about the place for me, which struck me as strange. Which is not to say that I don’t miss my son, I just didn’t have that spike in emotions I’ve come to associate with the place. The first time I left after just a few minutes because it seemed like I should get back to the group. The second time we were called away within moments of arriving at the rock by the housekeeper, who wanted to say hi and bemoan to us the fact that she’s being kicked out of her apartment in a few days. That news prompted a bigger emotional reaction out of me than the act of visiting the stone.

Is this what time does to the mourning process? All the emotions are still there – I heard a podcast about a woman with terminal cancer today and all the emotions welled up just like they always do – but I find it’s become more of a numbness in the background. Even when it does perk up and hit me between the eyes, the sting only stays for a few minutes, not taking me to the depths like it used to.

I suppose, looking at it positively, he’s become more of an everyday presence, someone I think about multiple times a day. Looking at it negatively, I feel like it’s disrespecting him to lose my grief. And I can’t even say “Well, that’s what he would have wanted,” because he was too young to understand the concepts of death, grief and loss. He just showed up and burned out before the world could get its hooks into him, which is also sort of a reason to be happy sometimes.

So, maybe I’m moving beyond the markers – which feels really stupid, given the time and money we invested into finding a plot and a headstone – or maybe it’s just an evolving journey and, in a few months, I’ll be telling you a completely different story. He deserves to be remembered: That’s what I do know. A gravesite is a good way to do it. And everyone deserves a chance to go there and remember him in their own way. And, as his parents, we reserve the right to take charge of the site every now and then. But that said, thank you to whoever thought of him. It is appreciated.