Author: admin

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.

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.

I’m worried I’ve created the world’s most depressing Advent calendar.

The last two years, I found a company that puts together picture Advent calendars for you. You upload the photographs you want, pick a theme and, Bam!, you have a personalized Advent calendar.

I really didn’t want to do one this year. It seemed somehow gruesome to put together a calendar including pictures of Colin. But Christina really wanted one and talked me into doing it.

I still held back. In past years, I’ve made one Emma-heavy calendar, one focused on Noah, one that was Colin-centric and one that had a good selection of pictures of all three. They were then sent to the appropriate grandparents and godparents and uncles and aunts. This year, working under a little duress, I only made one with a mish-mash of pictures of all three kids. Everyone who got one got the same calendar.

Except we’re on Day 5 now and all the pictures are of Colin. And I’m thinking the people who got this calendar must be wondering if I’ve created some personal depression anthology and disguised it as Christmas cheer. It’s not that they’re sad pictures of Colin. They’re from a year ago and he’s doing pretty well in all of them. It’s just, to me, there’s something harsh about an Advent calendar featuring pictures of a recently deceased child. To all the relatives out there, I assure you there are pictures of Emma and Noah coming.

Otherwise, we’re moving into the Christmas season and I can already see that it’s going to involve a lot of feeling our way. He loved Christmas. One of my last pre-hospital memories is taking him to day care. I was pushing him in the stroller, still thinking he was far too old to be in a stroller, but still not able to come up with any options to get him to walk that far, when we passed a senior citizen’s center that had a simply enormous inflatable Santa hanging from one of it balconies.

“Weihnachtsmann!” (Santa Claus!) he said, and you could tell he was so excited about the upcoming holiday. It must have been the last week of November, because people don’t put out their Christmas ornaments that early here in Germany. Which means that, within a week, he was in the hospital. He spent Christmas under heavy sedation in the ICU. And now he’s not around this Christmas.

We’re trying to make the best of the holiday. I’ve talked to families who lost children. Some of them say they didn’t celebrate Christmas again for years, which seems harsh. Also, Emma and Noah would not put up with that. So, we’re going to have Christmas. But it’s hard to commit this year to what used to be my favorite holiday. I’ve done very little. Christina, through sheer force of will, has gotten some decorations up. And I think we all do want to have as nice a Christmas as possible, but it feels like we’re trying to set up the ornaments while standing under a deluge. It’s all a little bit harder than it should be, and not physically. Our hearts just aren’t completely into it.

And yet we try. We went to Noah’s school Christmas concert today (where a group of kids inexplicably sang “Old Town Road” for the audience), which closed with a version of “Ding Dong Bells.” I was unfamiliar with the song. On the way there, Emma had told me it’s a pretty standard school Christmas song and that she had taught this song and “Jingle Bells” to Colin, probably last year. And there I was at the Christmas concert, having just learned that Colin knew a Christmas song I didn’t know about, and suddenly we were singing it and it dawned on me that this was probably one of the last new things he experienced before going into the hospital. I didn’t break down crying, and it wasn’t an entirely sad experience, but it’s just another sign that this Christmas isn’t going to be quite like all the other Christmases.

Then again, I suppose there’s no way it could be.

I’ve had this first blog in my head for weeks now. I knew pretty exactly how it was going to be. And then life happened, so you’re getting this blog entry instead. The one thing I do know is that I’ve got a lot of things rattling around in my head, so the original blog entry will show up at some point.

This weekend is important. It depends on how you count things, but it’s one of our first big anniversaries since Colin’s death. Last year, on December 2, I woke up and went to the hospital with my back killing me. By the end of that day, Colin was in the hospital and, in some ways, never really returned. I guess that makes Dec. 2 the real anniversary, but since it all happened on a Sunday, that makes this day kind of critical in my mind. I guess it doesn’t really matter. The point is, special dates will keep coming up and we’ll keep thinking about him.

But this weekend was also unexpected. I started Saturday wondering about the existence of ghosts. By the middle of the day, I was having one of the first crying jags I’ve had about his death – and this after a week of complaining to therapists that I’m being far too stoic about handling his death. By the evening I was drunk and telling some near complete stranger about Colin’s death at a party, because I’m a real upper these days.

Now, I don’t know if I believe in ghosts. I haven’t really thought about them much since I went on a tear through all the ghost stories in our school library when I was about 10. The highlight of that reading adventure was the chapter on “erotic entities.” I didn’t know what the word “erotic” meant at that point and, boy, did I get an education. What I do know is that all our Lego alarm clocks went off Saturday morning (Emma says hers didn’t, but I heard two separate alarms from the kids’ room).

We got the clocks around the time of one of our big Legoland tricks. I have Superman, Noah has Batman and Emma has Batgirl. About a year ago, Colin became extremely interested in these clocks, carrying them around and arranging them for hours on end. I thought it was cute. I remember Noah being annoyed that his brother kept wandering off with his clock. I associate the clocks with Colin.

The thing is, the alarms shouldn’t have gone off Saturday morning. I don’t remember setting mine. There was no reason for me to do so. Ditto the kids. There’s dozens of logical explanations for why they could have gone off. I get it. I still choose to focus on the fact that I went into this weekend apprehensive about his memory and then, to start the weekend off, some of his favorite toys made themselves known. Like I said, I get the rational reasons. I prefer the version where a little Colin ghost came and reminded us about him.

Then again, it’s not like we have troubles remembering him. You can’t escape him in the house, in our life. Later Saturday afternoon, we went to a bazaar at the school. One of the things about my life right now is how boring it is on some level. Christina had a stand to man. Emma and Noah each took 10 euros and disappeared to the sales. And there I was alone. My family didn’t need me actively. Normally, until a year ago, my job right then would have been to watch Colin while everyone else ran around.

Now I don’t have that job. It hit me pretty hard. It isolates you. There were any of a number of friends and acquaintances at the school right then, but the last thing I wanted was to bring anyone down with my problems, so that’s me, sobbing alone behind the school, because there were fewer people there right then.

And then I did the only thing that made sense: Tracked Noah down and followed him around until he asked me to leave. Then I went and stalked my wife while she was trying to work. And then it came my turn to man the bratwurst stand, but they had already sold out (which was kind of my plan when I took the last shift at the stand), so we went home.

And then came the party, and then came too much beer. I don’t even remember what the poor guy said to me at the party, I just remember turning to him and saying “Look, my son died two months ago,” which is about the best conversation killer there is out there. What have we learned? I keep my problems from my friends, but drunkenly tell my friends’ friends about what’s going on if given the opportunity. This is why I’m in therapy, I guess.

I don’t know how often I’ll be keeping this blog. I don’t know if there’s ever going to be a point to what I’m writing, but here we are. Thanks for reading.