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Quiet Time

“I’m so tired,” said the first colleague.

“Me too,” said the second one.

And this is where I tripped straight into one of those landmines that have become fairly commonplace for my everyday. Because the only reaction I had was “Well, I haven’t really slept a good night since my son died in September.”

But I didn’t say that because I know, on some level, that I’m already freaking people out at work a little bit, so I just keep quiet and don’t talk about it.

But it happens all the time. I shared an elevator with a colleague last week and she was chit-chatting about the weather and what-not. And the whole time she was going on, my internal dialogue was “My son died in September. My son died in September.” Repeat ad nauseum. You begin to get the feeling that you’re not quite fit for normal society.

Don’t get me wrong. I don’t feel like a reject in the office. I don’t even feel like Quasmidodo. I just live in fear of revealing too much at the wrong time and pushing others and myself way over out of our comfort zones. So, I spend a lot of time being quiet.

And it’s going to keep getting harder. There’s at least one guy leaving the office soon (he spent his day today on the phone complaining about the logistical bureaucracy of a move to Switzerland. He tried to get my sympathy. It took a lot of self control to not point out that burying a 5-year-old in Germany also takes a lot of bureaucratic tap dancing), which means that, at some point, there will be a new hire, and this person isn’t going to know my deal. And it’s not like I’m going to want to pull him/her aside on day one and introduce myself as the dad of the dead kid. But will it be on day 2? Day 3? The first time we go out for a team for drinks, to make sure it’s a truly cheerful affair?

There’s also the fact that I started this ball rolling when I returned to work: I want to get my company to do an article about how nightmarish the home health care system is in Germany. I’ll admit, I have a bit of a chip on my shoulder, but I also think this is a good story. A lot of people could end up needing home health care someday, and they might want to know how awful that could end up being. I mentioned it to the chief editor when I got back and he seemed into the idea, even suggesting I write a firsthand account of what happened to us and Colin.

But, to make this happen, I need to sit down and talk with the health care reporter, who is a near stranger to me. We’ve been dancing around each other for about three weeks now. He has no idea what I want, other than a meeting to talk about a potential story. He has no idea that Colin is dead. And me? I could probably easily clear up time to talk to him, but I fill up every free moment I’ve got at work with busy projects to get my style guide -essentially our online dictionary – in place, because there is a part of me that is terrified to sit down with people I don’t really know to tell them “Hey, I’m the guy with the dead kid.” I wonder if I’m ever going to get this project going.

Because, on some level, it is terrifying to tell people about this. It’s almost like revealing some terrible, dark secret about yourself. It feels like it might even be easier to say out loud “Oh, I’m into kiddie porn” or “Hey, I kick puppies” than to say this truth out loud.

So, I’m quiet a lot. And I don’t think that’s a terribly good thing for me. But I don’t have any better ideas right now.

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Here, There and Everywhere

In a lot of the literature that I’ve come across reading about grief – and I want to stress, I don’t go looking for this and people aren’t sending it to me, but I keep tripping over it these days – I see that it’s fairly common for people in grief to make sure they’re busy all the time so that they don’t have any time to sit around and think about what’s really bothering them.

Given that that was my default before I ever dreamed that a child of mine could get cancer, it means I’m getting it in spades.

My therapist and I talked a bit about control today and, it does make a little sense that after going through 3-4 years of hell where I really had no control over anything, I might double down on things and really try to make sure things are just the way I like it. Even so, when he asked what all I was doing, I had to admit it seemed like a bit much. Counting down, I came across:

  • My normal job (where I’m trying to finish this eternal project to get our style guide complete and up online)
  • My normal parenting duties
  • The writing I’m doing on the side about Colin
  • The writing I’m doing on this blog
  • My work to make this blog look like it’s not a middle school science fair project
  • My promise to translate the hospice’s website
  • My latest promise to edit an academic paper by the hospital psychologist, titled, of all things “Regret in Bereaved Parents.”
  • My efforts to make sure we finally get all the medical bills paid
  • Efforts to make sure we finally get some kind of receipt for all the stuff we donated to the hospice (Christina is doing the heavy lifting here)
  • Just making sure all the loose ends are tied up: his passport cancelled, his bank accounts, closed, etc
  • And we’ll have to get a headstone one of these days.

It’s kind of a lot, I realized. But I’m not sure what to cut out or if I would want to cut anything out. There is a part of me that realizes I would be a little freaked out if I suddenly had nothing to do but sit around the house and read and watch TV. There is a part of me that worries that, if I wasn’t fully distracted, I might go to some dark places. And then there’s a part of me that wants me to go to those dark places because I remain unhappy about how, to me, it feels like I’m not grieving him nearly enough, how I’m just snapping back to normal life.

I knew it wouldn’t all end when he died. It is astounding though, how the choices continue to be just as crappy.

OK. Off to edit that paper now.

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Eagle eyes

Who wants to help me find all the errors in the above photos?

Off the top of my head, I see:

  • The bill was sent nearly four months after the patient died
  • The bill was sent six months after the treatment was given
  • The treatment was provided by a doctor neither Christina nor I can remember seeing since 2017
  • The bill is for 16.32€? Seriously? Even assuming the doctor did see Colin in July, what services did she provide that only amount to 16.32€? What could she possibly have done that only equaled that amount? If the service was so crucial, how come the bill is only showing up now?
  • The bill showed up a day after I compiled our insurance claims, containing a whopper of an 18,000€ bill from the home health agency that I’d really hoped would be our last bill regarding his health care.

On the plus side, it is the first bill we’ve received for Colin for more than a month, so that’s something.

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Comfort and joy

I suppose I wasn’t ready for any part of this new life, but I didn’t expect sleep to turn into such an ordeal.

I don’t remember having a ton of problems sleeping during April and May when we had him in the house. Nor when we were in the hospice. I mean, sleeping was hard in April and May because some of the night nurses just made so much noise. And I couldn’t sleep long when we were in the hospice since I wanted to be up in Colin’s room shortly after 6 a.m. every day.

But I remember going to sleep and staying asleep during all that time.

And then we got home after he died and, suddenly, I didn’t sleep very well any more. I’d fall right asleep: That was never a problem. Staying asleep? Not so much. Most days I would wake up after 3-4 hours of sleep and then really have to toss and turn until I could get back to sleep. Problem was, once school started, this meant I was usually waking up around 3 a.m. and then getting back to sleep just as I had to get up to shove Emma and Noah out the door to school.

Things then took a strange twist when I woke up one night to find Christina had hooked me up to the finger clip we had for Colin to check his blood oxygenation. It got even creepier because, when I woke up to this tableau, I immediately asked what was going on. But Christina wouldn’t answer. Turned out she was trying to count my breathing rate or heart rate or something like that, but I’m here to tell you it’s uber creepy to wake up like that and then have the person in bed just stare at you.

Christina is worried that I might have sleep apnea, which is apparently a thing in the Sorrells family, which is why I was wearing the whole get-up you see in the picture above. I hope it worked, because I feel I barely slept last night. It didn’t help that Emma showed up and hogged the bed for half the night, but I was also probably uncomfortable with all that on. I should get a verdict by Tuesday or Wednesday.

So, we’ll see. Right before Christmas, my therapist told me I can get melatonin over the counter in German pharmacies, which frankly knocked my socks off, since you basically need a doctor’s note to get ibuprofen here (and will get a serious talking to from customs if you try to mail some to yourself, I can tell you from experience). But I got some. It’s a tiny, tiny dosage mixed in with some other homeopathic stuff, but it does seem to help. I have kept waking up at 3 a.m., but I’m now able to roll back and go to sleep. And I can tell you from personal experience that if a child shows up in the middle of the night to philosophize, it doesn’t put me down so hard that I don’t wake up when the debate club fires up.

Still, I wish I knew why I wasn’t sleeping. I’m tired, I can assure everyone of that. I don’t feel like I’m having bad dreams. I don’t even know if I’m technically having recurring dreams, since they’re so infrequent and different every time. The basic scenario is that I’m talking to a health care professional – I might be in the hospice, the hospital or at home – and they’re really excited about some new thing they’ve discovered that will make Colin feel better or maybe even cure him. And I’ll listen to them for a long while and think it doesn’t sound like a bad idea when, out of the blue, I’ll remember “Oh, Colin’s dead, so we can’t do anything for him any more.” And that’s when I wake up. The only variation I had was a few days ago where a former work colleague was trying to sell an unauthorized version of Colin’s story to some TV station and I, oddly, didn’t really care.

But again, that’s not every night and … well, I just don’t know. I’m seeing the doctor last night. Maybe I can get a better melatonin dosage after that and really sleep through. All I know is: I don’t plan to be up late tonight.

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Onward, upward

I spent most of the week after Christmas marveling at how easy it had been to move through the holiday, barely weighed down by sadness or bad memories. It was surprising, since Colin loved Christmas and it really is my favorite holiday.

Then came New Year’s, which is not my favorite holiday. I’ve never much cared for the atmosphere of “We must party now.” Berlin’s obsession with fireworks has also grown old over time. So, I started December 31 with my usual attitude of “Let’s just get through this.”

Then we decided to go to the grave and light a sparkler for Colin. Christina wanted to go just as it turned dark and it seemed like a really good idea. And it’s not as if I had a breakdown or anything. I wasn’t intensely sad afterwards, but I was also not in the mood for anything like a party. It took until almost 11 p.m. until I could halfway register something like gaiety (upon which, I immediately drank too much champagne). The only upside was that, since it was obvious I didn’t want to be at the festivities, I used the threat of my potential flight to get people at the table to turn off their mobile phones for once. I mean, if I elect not to escape the party for a book in a quiet room, the people who claim to want to be there don’t get to escape to the internet.

And now it’s the new year and, if I’m not mistaken, probably still New Year’s Day somewhere in the world as I type this. I see a lot of challenges ahead. Like, the retreat for grieving families won’t take you until your loved one has been dead for six months, since they say the true grief often doesn’t hit until about half a year later, which presages a really rough March and April for us. There’s Colin’s birthday and all the first anniversaries: of him being taken off solid food; of being told that the cancer was back; of moving into the hospice. It’s not as if I plan to wear black and ritually weep for each of these, but the memory will be there, darkening whatever else might be happening that day.

It’s encapsulated best in our family calendar. We’ve had five to six columns in our family calendar for year, keeping track of everything from holidays to chemotherapy appointments. We usually never fill out a month until we’re almost upon it, and that includes the names on top. I know we had Colin in there regularly through the summer and then, one day in August – after Emma, Noah and I returned to the house – I was filling things in and it just dawned on me that it was kind of pointless to put him in for October and November. I have no idea how his name got in the December slot, in my handwriting no less.

But now we’re down to four names, and it’s just another sign of his absence, just like when his name disappeared from the list of active accounts at our bank to the way that, when I set up our 2020 filing system, I’m not going to need a separate binder for Colin’s medical bills any more. The thing is, there’s no escaping it and, all things considered, I’m not sure I would escape it if I could.

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611

If you’re here, you can see that the website has gotten a little better. I hesitate to say “good,” since I still see a lot of beginner errors on this site. However, I am a beginner, so I guess that’s the best we’re going to get until I get further along my learning curve.

One of the best additions is the PDF of my Caringbridge blog . (https://five-minus-one.com/the-caringbridge-journal/) There was a lot of back and forth extracting that from the other website, but the full version seems to be 611 pages of writing by me and comments by readers.

I’m a little floored. I knew I had written a lot and it was over the course of three and a half years. But still … 611 pages. I mean, no one’s ever written 611 pages about me. Sure, I bet there’s probably that much documentation on me in terms of visa applications and tax forms and what-not, but that’s not personal. I wrote 611 pages about my son. Even if you strip out the comments – which were other people writing about my son – you seem to come down to 339 pages, which is also respectable.

It seems like the least I could have done for him. One of the many things that has troubled me since Colin’s death – and there are too many to count – is that there will be, one day, little left to memorialize him. Granted, most of us will fade into obscurity, but there will be a generation or two after I’m dead that will remember me as father or grandfather, perhaps even ‘that annoying older editor who taught me how to use semicolons.’

Colin will just have the headstone and even that is not eternal. He was too young when he died – and his level of development hadn’t advanced enough – to really give him much time to do arts and crafts. I have no plaster handprints. I have no matchstick figures he made. I don’t even have drawings. It shouldn’t matter, but I want something physical I can hold on to.

But I have 611 pages I wrote about him, even if I’m not sure when I’ll get them printed.

One of the many things I’ve learned over the years is not to compare what your friends do for you. Don’t tell your friends which birthday gift you liked best or which Christmas card touched you the most. But I have to bend the rule here a little. Of all the cards we got – and they were all touching – my friend Jen sent me one that made me feel much better. I haven’t seen Jen in a decade, forget about her having had a chance to meet my kids. She’d never laid eyes on Colin. But she thanked me for the Caringbridge entries, because she said it let her get to know him, probably better than friends of her own child whom she might encounter regularly.

Maybe, in my own way, I’ve given him a chance to have his memorial. It wasn’t what I planned when I started. I’d rather have the real thing here, not a stack of papers. But it makes me feel like I’ve done a little something for him. And that helps a little.

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The irony

So, who loves irony?

You see, like probably pretty much every news wire in the world, we put out a package of end-of-the-year stories so our clients have enough stories to keep them busy during the slow season between Christmas and New Year’s. They’re a mix of fun features and look-ahead-at-the-news kind of items. Somehow, during the course of my time at my company, I’ve become the one in charge of them.

When we started them, we always did a roundup of the most famous celebrities to die during the previous year. I thought it was a great item to have and always pushed to have it in. I wasn’t always successful. I’ve had about five different bosses during my time at the company and some loved the item and some didn’t. Yet I’ve always fought to include them.

Over the years, I eventually got sick of the Yearenders. I think I managed to kill them one year. Then they were resurrected last year. I got out of handling them last year, on account of nearly half my family being on sick leave, but this year they were waiting for me as I showed up for my reintroduction to the working world.

And we’re doing the list of the dead.

Specifically, I’m doing the list of the dead. And it didn’t dawn on me until this morning – the day I’d set aside to put the list together – how bad an idea it might be for me to have this kind of job just three months after my son’s death.

I won’t lie. I went through Wikipedia’s list of famous deaths month by month to make sure we weren’t missing anyone. They break it down day by day. It’s fairly impressive. I discovered that there was an exotic dancer named Satan’s Angel who died. And there was a guy named Robert Sorrells, listed as an “actor and convicted murderer,” which makes it seem like he has quite the resume. And I neared September 17 and got a little choked up as I forgot the date. I forgot that Cokie Roberts died the same day.

But I got through it. I just told myself I had to be professional and get the list done and that was that. I scare myself a little bit, how easily I shut down my emotions at moments like this. Then again, how else am I going to do this? Probably millions of people died in 2019. My son was one of them and no one is going to put his name on a list or give him a Wikipedia page. That’s just the awful reality. So I guess I have to decide if I’m going to remember him by being a weepy mess or by functioning day to day. I’m choosing functioning, but it still doesn’t feel quite right.

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Meds and Mads

How is the world of German health care bureaucracy treating us?

Like it’s never going to let us go.

I found this card in my wallet today, as I tried to figure out where Noah’s bus pass had ended up. They gave it to me shortly after Colin’s original diagnosis, so I would have it on hand if some other medical emergency cropped up on top of the tumor and I had to quickly tell paramedics what was up. I’d forgotten I had it in my wallet until now. I guess now it’s a sad little souvenir.

But it begs the question, why would I need a souvenir? It’s not like it feels as if our efforts to zero out all his debts owed and contracts uncompleted is ever going to come to an end. One of our neighbors is the former health minister for Berlin (why yes, I do live in that kind of neighborhood), and when I asked aloud a few weeks ago if the bills would ever end, he just shook his head “No.” This is going to be with us for a while.

Some of it is just absurd. I thought we were done at the end of November when we finally got a bill for his hospitalization from March. How these facilities stay in business when they wait half a year to bill is beyond me. But that wasn’t the last one. Just last week, we got what should be the final bill from the pharmacy that supplied us while he was in the hospice. I assume it’s only a matter of time until one final bill shows up. At least the rate of arrival has slowed radically.

And, as annoying as the bills are, none of them has quite been so depressing as the bill from the funeral home, which included the special line item for “burial of a child under 12,” which means there’s a special line item for the “burial of a child over 12,” and it really makes you ask yourself what kind of world it is when we need line items like that. But at least the funeral home bill was timely … and less than we anticipated.

Otherwise, the gears of medical bureaucracy simply seem determined to wear us down. I’m in the final weeks of my slow return to work. During this time, I’m technically still on medical leave. You can’t do this program if you’re not on medical leave and I got a sheaf of paperwork before I started from the insurer, explaining how this would work. Since I’m on medical leave, I get paid by my insurer, not work. And it was getting towards the end of November and I realized I hadn’t gotten any money, so I called and asked what the hold-up was.

“We need a new sick note from your doctor,” they said. I pointed out that the only reason I was on this program is because everyone agreed I was still sick. No, they needed a new note. My doctor didn’t know what to make of that. Nor did the lady from human resources at work. So, I got a new note and mailed it to all the required parties.

Today, I got a letter asking for a new sick note. I swear.

Meanwhile, the awful home health company finally got us a bill for May. They didn’t get it to us until November and there were, of course, errors. People were listed as working on days when we had no nurse. One remembers that kind of thing when caring for a dying child. When Christina pointed this out to them, they said it would be difficult to fix the errors, since they had paid the workers for the days listed on the roster. “Not our problem,” we told them, noting that we had pointed the errors out back in June. It took another week or so, but then they got us the bill, helpfully with instructions to pay it within five days.

And then there’s the battle for Colin’s stuff. Even though the insurance paid for all of his breathing machines and food pumps, they don’t want the stuff. They say it’s ours. We don’t need this stuff, so we thought we would donate it to the hospice. It took a couple of months to convince the supplier that we actually owned the stuff and, even then, they managed to abscond from the hospice with one of the breathing machines (they say they’re going to return it). But, once we won that battle, the hospice decided to throw us for another loop and say that they weren’t sure how to handle the donation, since, in their eyes, we hadn’t paid for the stuff. To be clear: They were happy to take the items. They just didn’t want to give us a receipt for tax purposes. It wouldn’t have been a whole lot of money, but, especially after the year we’ve just had, we weren’t really up for forgoing a couple hundred euros in tax returns just because the situation is complicated. We’ve asked them to please check it out and our banker and lawyer friends insist that, although frustrating, this is a problem that can be solved. After all, if someone gave me a car as a gift, I could still donate it and ask for a charitable write-off. This isn’t all that different. Except for the depressing part.

Oh, and the US consulate insisted on issuing a special death certificate. I have no idea why they care. It’s not like he ever set foot in America. But they’ve had his documents for two months and I just found out – after making inquiries – that they’re not getting anything done because the German government hasn’t given them a death certificate yet. I’ve had a death certificate the whole time. This could have been over. Except bureaucracy seems to require that it not be over.

At least there were no bills today. That’s something.

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Two or three

It’s such a simple question. How many children do I have?

Except now it’s really difficult to answer.

Others had warned me that this question was going to be a minefield. I told myself I’d tell people that I had three kids when the question came up the first time. I figured I wouldn’t make a big deal out of it, when the time came.

And then the question came. It wasn’t in some calm setting, as I imagined it would be. It was while heading home from the office Christmas party – an event I wasn’t sure I should attend but which I pulled through while achieving my three main goals a) not crying b) not making anyone else cry and c) not getting ridiculously drunk – with a colleague while waiting for the subway. I know her by sight, but have forgotten so many names of so many of my German colleagues in the last year. I had no idea she had kids and the subject came up and then she asked the question.

And I said two.

It was probably because I was a little drunk (I said my goal was not to be “ridiculously drunk”). It was partially because I wasn’t expecting the question. It was mostly because i just didn’t feel like explaining the whole story in a subway station to a woman I barely know. It’s because she asked how many children do I have, present tense, and the only correct answer is two.

But I still felt like I abandoned Colin a little bit with that answer. It’s not quite Saint Peter denying Jesus three times right before the crucifixion, but it doesn’t feel good either.

And I’m not sure how I’m going to answer the question the next time.

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The grieving kind

Being the parent of a dead child, your life quickly fills up with anniversaries. There are the ones in your head that you might not make a fuss about commemorating (Dec. 15 – the day he got his tracheotomy, for example), the one that are obvious, like his upcoming birthday in February, and then the OFFICIAL ones where you get invited by an organization for a proper memorial.

There was already one at the hospital a few weeks ago that we blew off, because we weren’t up to it. Then the invitation came for tonight’s, at the hospice. Given our better ties to the hospice, there was a sense it might be a good idea to go. Also, we were probably a little more emotionally ready than we were before. That said, there was also some uncertainty within the family about whether we were ready for this. There was also reason to believe some members of the family just wanted to go back to the hospice to visit the Playstation in the TV room, but that’s another story.

We went. It was, all in all, a nice ceremony. I’d say about 100-120 people were there. There were some readings which aren’t exactly our thing, but if it helps the other families feel better, then they should do it. Then we all went to the pond and laid a candle in a wax paper folder on the water. The idea being that this is a global memorial day for deceased children and, as the globe spins, each community lights up candles at 7 p.m. to remember their lost ones.

I can’t tell yet if it feels nice to be in this club. Yes, I’d prefer not to be alone doing this. But, given that I never wanted to do any of this, it’s hard to be all “Yay, I’m in a team!” Then again, at least we’re doing something beautiful together, even if it comes with sometimes meh poetry.

Mostly, I was struck by the number of people there. 120 or so? That’s far too many to have lost children. And they did the readings in at least two foreign languages – I’m guessing Arabic and Turkish – meaning we’re stretching this pain across cultures and countries. It just feels like too many. And I know that 120 attendees is not the same as 120 children, but I don’t know how to do the math? Four attendees per dead child? More? Less? However you add it up, it’s too many. They did pull out 17 lanterns from the lantern room for attending families, but I think the hospice has been there longer than the lantern wall, and I think we were commemorating more than 17 children. But man, I wish the number was smaller.

I don’t know how often we’ll do these group events. It is nice to go back to the hospice, but it takes its emotional toll. I know I got much more emotional a week ago when I visited his rock by myself before the men’s support group meeting. There, the other guys encouraged me to go to the grave by myself sometimes, since it’s true that there are a a lot of distractions when we go to the grave as a family. It borders on the impossible to mourn properly while parenting. You’re at the grave, starting to mouth the words “Colin, I wish …” when you have to interrupt yourself with a parent-voice-level “WOULD YOU PLEASE GET YOUR FOOT OFF THAT MAN’S GRAVE!” It isn’t really in keeping with the spirit of the affair.

Why, just tonight at the memorial, the following sentences (or versions of them) came out of our mouths:

  1. Please stay on this side of the pond
  2. Please don’t fall in the water
  3. How did you get that much mud on your shoes?
  4. Do not touch that statue.
  5. Please don’t tap dance while I’m trying to have a moment of silence

You see the hurdles. Grieving quietly by yourself doesn’t quite feel healthy, grieving in groups feels forced and grieving as a family … well, we’re still practicing that.