I’m gaining diabetes chops

I feel weird being “proud” of being good at diabetes. I mean, I’m not super proud to have it in the family–I’m not ashamed, either, it’s just a thing for me to deal with,like gray hair–but it’s a special combination of being both a monotonous, frustrating grind and super scary.

It’s been a while since I’ve reflected on all of this in writing, so I thought I’d try to make a list of the things that I’ve learned or am trying to do.

  • Bad sugar is not (always) his fault. I come from a family that expects kids to take responsibility for themselves and my first instinct is to be angry at bad sugar. That’s not super helpful and it’s not always his fault. I don’t always estimate sugar correctly, and I would be the kind of person who forgot a shot when sweets are passed around at school. Being angry doesn’t help. At worst, it probably makes him not want to talk about his sugar.
  • I try to connect his blood sugar to immediate things. This is hard for me because he’s an eleven year-old boy and not super aware of his feelings, anyway. Asking him to sense if he feels different with his sugar high or low–when it’s not an emergency–hasn’t been super helpful. However, I do point out that he had a rough day–and that’s the kind of thing he knows–and I say his sugar was high all day. If I’m doing this correctly, I’m not rubbing his nose in it, but just saying “one of the strategies you have to avoid bad days is managing your sugar.”
  • I try to avoid telling him to take shots. Partly, this is because I want him to learn to get shots on his own. What I’ve been doing for the last weeks is noticing that his sugar is high and saying “hey, this is a great time to do a workout video.” I try to not make it a punishment, but instead to say “then you won’t have to eat any carbs to do a video later, and we want to stay active during the lockdown.” My goal is not to present the workout as a punishment, but to have him notice that my feeling a need to jump into his sugar management is less fun than him managing it himself. (And, to be fair, I also run and do the videos that I ask the kids to do, and he would be doing videos anyway.)
  • I’m getting older and wiser. This doesn’t really belong on the list. I don’t do anything, but I’m gaining experience. I can give a shot before going to bed and don’t feel the need to set an alarm to make sure it wasn’t too much. I understand diabetes–at least, his diabetes–enough to take an active role in the “why didn’t his sugar do what we expected?” conversations, and that makes me feel more competent as a dad.

Christmas is a rough time to have diabetes and, to a lesser extent, rough for the people trying to set up a nice Christmas without sending the kids on a diabetes roller coaster.

But, winding the year down, I feel better about my role in the whole thing.

Blood sugar and behavior

I might not be the smartest person you’ll ever meet, but, given enough time, I can pick up on a pattern. The problem is, when our eleven year-old, diabetic son is moody and aggressive, it’s easy to think he’s heading towards puberty… because he is.

However, sometimes, he’s our little boy again and wants to hold my hand on walks. And I really enjoy those times.

High blood sugar days

It’s become clear that, with high blood sugar, our son is in the middle of his rebellious teenage years: he’s cruel to his siblings, he uses a tone with his mother that shouldn’t be tolerated, and he’s accused me of not loving him. Recently, he even asked what boarding school cost. (When I asked why he wanted to live at a place that he hated, he just rolled his eyes.)

We’ve had several of those days, and, sometimes, several in a row. Especially when he’s already in a mood, he’s not motivated to get his sugar down.

Is autonomy the problem?

Sometimes, if his sugar isn’t super high, we’ll let him deal with it. His mom and I can both see his current blood sugar on our phones, so we have an idea. But, beyond not letting him eat if it’s not where it should be, we let him do his own thing.

The thing is, that tended towards a downward spiral: he’s primed to be angry at us and then we don’t let him eat. Then, when his sugar is down far enough to eat, eating sends it back up before it comes back down again.

By the time it’s down, either the anger has become the day’s defining characteristic or he’s in bed.


Some other ideas

As I keep saying to him, I want him to be the kind of adult who can move away from home and be independent, so it seems ridiculous that I should start monitoring his blood sugar for him. After all, what will he learn from that?

But, as I’ve written, all of my incentives are to keep an eye on it, in the name of harmony at home.

So, I’ve adopted a pair of strategies. First, I point out the correlation to him. Often. I’ll tell him that I had a good day with him, and that he seemed to have a great day, and I’ll point out that his sugar was a factor. Having a good day seems like more of a motivation than some abstract long-term damage.

And, when we’re having a rough day, I’ll point that out. I try to do this in a way that says I’m not blaming him for it being high, but… I’d be the last to say I’m perfect at dealing with him in that state.

The other strategy I’ve only been able to get out once or twice has been fitness instead of insulin. Especially in the lockdown, I’ve been the family’s activity ambassador, putting on mandatory exercise videos or getting out for walks. The family has even started a couch-to-5k program that’s showing results.

With him, when I notice his sugar is high, I’ve said that it’s a good time for he and I to get out for a running workout, since he won’t have to actively load sugar. Or, another time, I just said “you’re sugar is pretty high. This is a good chance to get the rowing machine out and row it down to six.” (We measure sugar in mmol/l.)

Needless to say, most people aren’t living in a state of wanting to be surprised by a workout and it’s definitely negative reinforcement, but I try to not make it into a punishment. “It’ll give us a chance to check that off our list,” I say, or, “you told me you want to do a backflip. Remember the guy in the video who said the first thing to do is to get your body stronger? We can do that now.”

So, I try to point out that high blood sugar is an opportunity to do some unplanned fitness (and, to be fair, I spend the day doing random sets of pushups or wall stands and am always ready to join a kid in a workout video) and hope that he’ll decide to become aggressive about monitoring his own sugar, if only in the interest of fending off my fitness.

It’s an ongoing experiment

Whenever I think I’m in a parenting groove that works, some kid decides to grow in a way that throws me for a loop. I’d love to hear about how other parents are managing the tension between seeing our own reasons to keep blood sugar levels in line and wanting the kids to develop their own motivations.

And, most of all, finding ways to avoid making it seem like he’s being punished for having diabetes.

Consequences… and diabetes

discussion that my wife and I have often is that our kids don’t really ever suffer consequences. Partly, that’s my fault. I’m as much a sucker as the next guy for “it won’t happen again” (spoiler alert: it always happens again).

And, partly, that’s a part of us understanding how uncomfortable some things are, and wanting — for good reasons — to spare our kids that. After all, we ‘only’ have three kids and their lives aren’t yet so complicated that we can’t offer a lot of support.

Day to day manifestations

It can be simple things: “Did you do your homework? Show me?” I — the one who never liked school and sees the teachers as ‘the enemy’ — rationalize the teachers should use up their patience getting the kids to do homework. Not us. After all, we barely see the kids during the week, why waste valuable family time on activities that very clearly fall under the heading of ‘school’?

Because my wife — who is German and ‘from’ the German system my kids are in — sees each homework activity as a brick in a set of stairs that will eventually carry my kids to success. And she sees dire consequences if the homework isn’t done.

I’m not German. I’m ‘from’ the American system where the teacher is frustrated and maybe humiliates you in front of your classmates and that’s it. I figure that, if that kind of responsibility is important to the teacher, they should set up their own system of consequences.


After all, if I say “clean your room” and it isn’t cleaned, then it’s on me to be the heavy and to establish consequences. I certainly don’t get help for the teacher on that.

The thing is: my wife and I don’t completely agree on what’s important, and the kids know which parent to ask for what. That’s not unusual, but I worry that it means my kids live a generally consequence-free life.

Add diabetes to the mix

And now, with diabetes part of the oldest child’s life, things have gotten… More difficult. Plans that I had to send him out on his own (he’s nine — and never unsupervised) with his bike to make a map of the neighborhood now seem riskier.

Even more, I’m realizing he’s trying less and less hard to manage his diabetes calculations, because he only has to guess at the correct injection to give himself for a meal and then his mom barks at him and then gives him the correct calculation. She, of course, thinks that it would take too long to make him do the calculation two or three times while we’re waiting to eat. I — the strict father, I guess — don’t see a problem with saying “are you sure?” and then letting him undercorrect. After all, the doctors made it clear that nothing terrible would happen.

Mom, though, is a diabetic and knows that high blood sugar is no fun. And she’s not willing to subject him to that.

So, she basically does the calculations for him when she’s home.

Why it matters

I’m a big fan of the idea that there aren’t any ‘normal’ childhoods and that, as long as the kids aren’t abused, reality will eventually file off all their rough edges sooner or later. I don’t worry about making an ‘ideal’ childhood for my kid.

But, as a spectator of the world around me, I see parents belittling twelve and thirteen-year-old children for being so helpless. We all know that that is too old to depend on parents. However, the parents belittling their children don’t seem to realize that they’re responsible for training their kids.

And it’s harder to learn new habits with thirteen than with nine.

That’s why I’m a bit frustrated that my plans to introduce consequences — or, rather, to allow my kids to start suffering the natural consequences of their (in)actions — seem to have been set back by this stupid disease.

Stupid diabetes.

How do you manage it?

If you’re a parent and you’re reading this, how do you manage these things? What consequences do you insulate your kids from? What do you do when a diabetic child makes a mathematical error? How do you and your partner negotiate these discussions?

Finding a new routine with diabetes

Since the diagnosis, we’ve had the hospital stay, a weird five-day ‘crash course’ at the hospital, and the return to school. They’ve all been taxing in their own right.

However, I’m mostly amazed at child number one’s (the diabetic’s) resilience as we try to find a new routine.

Diabetes isn’t easy for kids

My wife was diagnosed with type one diabetes when she was nineteen. As long as I’ve known her, she’s had it. You’d think she’d be ready for this. You think I’d be familiar with diabetes.

The thing is this: child number one is half her weight, and seems to be doubly sensitive to insulin. So, any miscalculation has much more drastic effects. Even more, his pancreas is still producing about 10% of the insulin it produced before, and he seems to react to injections — and to sugar — differently at different times of the day.

The result is that, in addition to calculating the sugar in what he eats, he also has to look up the time of day in a table, do some complicated math (multiplication and division with up two two decimal places — and he’s in third grade) and figure out how much he should inject himself.

Then he has to eat everything he planned to eat, and nothing more. That part alone seems frustratingly difficult for me at thirty-eight.

He gets some help

This isn’t to say that our poor third-grader is on his own throughout the day. We live in Germany which is a weird, medical paradise. The doctors gave him a Verordnung (an order? everyone is explicit in telling me it’s not a prescription) for a caregiver and a medical care company near the school sends someone at mealtimes.

We do the math for him, and create these tables that he only needs to learn to read together with his caregiver.

And, of course, the teachers are super supportive. Which is to say, they let him do he has to do. (But the after school care seems happy to look the other way if other kids take his snack, so there’s that.)

Constant adjustment

Part of what has been hard for us has been the reality that you start with some ‘suggested values’ for many variables — how much insulin per unit of carbs, the correct amount of carbs to eat before doing sports, how many carbs to eat to correct for low blood sugar, the amount of slow-acting insulin to inject twice a day — and then you basically do trial and error.

In the week before last, there wasn’t a single day that we didn’t adjust his ‘food factors’ and recalculate the table he needed and his caregiver used. We constantly reduced his slow-acting insulin, and we reduced the amount of insulin he needed at breakfast — completely skipping it (intentionally) one day — before feeling like we got a handle on how his own personal diabetes worked.

And, the doctors tell us, we won’t feel comfortable with it for very long before his growing body changes the way all of these things interact and we can start the experiment again.

He’s a trooper, his dad is a whiner

From time to time, he gets upset or asks when it will all be over. But, in general, he’s pretty strong about saying “I didn’t inject myself for that, I can’t eat it.” And, I’ve pointed out to him, he’s getting more sweets now than his brother and sister, but only when his blood sugar is low (and we want to avoid that in the future).

I’m the one who feels bad for him. He sits down at a meal and has to figure out what he’s going to eat. I can’t do that. I eat until everything is gone.

And, we invest a lot of time together with him, but it’s not fun time doing stuff together. It’s time in which we lecture him on where to put his stuff in school because the caregivers couldn’t find it. Or, practicing math because he has to be much better at it.

I never wanted to be a dad who made the kids’ at-home time about managing their school performance. And, indirectly, I feel myself turning into that kind of dad. And I mostly feel sorry for myself in all of this.

The Diagnosis

The background

A few weeks ago — maybe two months — our oldest had a tick. My wife is fond of telling me that there’s a higher risk of Lyme disease in Germany than in the States, so she was watching for the signs. (Even though we found the tick and removed it.)

This blog post is named ‘the diagnosis.’ You can guess what happened next: he had Lyme disease. All the classic symptoms and a blood test. No worries: German medical care is excellent. We felt bad for him, but a three-week course of antibiotics was prescribed. I’m a big fan of the microbiome, but I’m familiar with what Lyme disease turns into, so, I don’t think we had a choice.

After a week on antibiotics — and the return to school — he began to get really, really tired. But, antibiotics and school were explanation enough, right?

It gets worse

We tried to spoil him as much as we could and counted down the days until the antibiotics were finished. The doctors had said that they could give him a note to get out of school if he got too tired, so the wife took him in for the note.

Only by chance — the note could have been a matter of course — they talked about the symptoms and the doctor asked him to pee into a cup. The way the wife tells the story, the doctor went off and, when she returned, obviously had bad news.

“What?” My wife asked?

“Diabetes.” The doctor said. “Sugar.”

My wife just sent me a photo of the referral to the hospital with the diagnosis written on it with a comment and I read it between lessons.

A lot to process

Let me be clear: I don’t feel bad for him. I don’t even feel sorry for myself (even though I tend in that direction, anyway). But, the poor guy has a lot to learn, and new habits to form. And, I’ve got quite a bit to learn along with him, as well as a set of ‘soft skills’ to help him learn his new habits, as well as the application of willpower, without adding to his current level of stress (which is high enough as it is).

I’ve benefitted from blogging about stuff here, but I’ve refrained from writing a lot about my family (I imagine teenage kids stumbling across what I write — or, worse, classmates). But, I’ve decided that I would benefit from writing about it. And, though I don’t strike up much communication via this blog, if I contact other parents of kids with diabetes… that would be okay, too.