Friday, May 23, 2014

It's not the numbers. It's the work.

I made mistakes with J. 

He was my first child with diabetes.  Like the first pancake, everything just isn’t going to turn out perfect with your first one.

One of the biggest mistakes I made was placing an emphasis on numbers.  I’ve been trying to correct the problem for a couple years now, with some headway…but damage has been done.

I’m “lucky” because I have a couple more to get it right with.  Most of you reading this will have one shot at raising a child with diabetes.  I write this post in hopes it’s not too late for you. 

You know those blood sugar numbers that pop up on the meter?  I believe that our children should not, in any way, worry about those numbers.

Never should we ever check a blood sugar monitor and make them feel any shame whatsoever about the value of the numbers on the screen.

Because the numbers are OUR problem.  Not their problem.

We should in no way expect stellar numbers and any sequence of numbers at all.  All we should expect from our children is for them to put in the work.

If they are actually checking their sugars, putting the numbers in the pump and bolusing for those numbers, or for those on MDI, correcting those numbers via shot...

And if they are blousing, (giving insulin,) for the food that goes in their mouth…

Then the numbers whether high or low are the problem of their endocrinologist, and the parent.

Correcting settings is the adult’s problem.  Consistent highs at night are the adult’s problem.  Lows after recess are the adult’s problem.

Doing the work?  Their problem.

The emphasis needs to lean towards good habits, not guilt for numbers that are as easily controlled as a rabid otter.

The number factor should be completely moot.  If we take the emotion and the fear away from the numbers, their lives will only be more rich and rewarding.  Because those numbers are never ever ever ever ever going away.  Why attach guilt so early on to something that is going to be a constant thread through everything they do, maybe forever?

Low numbers should mean food, and fast acting sugars…not fear of dying.

High numbers should mean corrections with insulin for relief from high symptoms…not fear of complications.

Let’s let them negotiate such difficult feelings when they are old enough to negotiate them.  Children shouldn’t be living in fear.  It’s our job to cradle that fear and hand it over to them piece by piece in such a slow rhythm that maybe the fear won’t impact their lives as significantly as it has impacted ours.

When should the conversations start about the consequences of numbers?  Certainly not when they have no control over the basal rates, the sensitivities and the carb ratios.   We can talk about not bolusing for food and the immediate consequences that holds.  Peeing a lot, headaches, concentration issues, not having energy to run during the soccer game…

They are children. 

I don’t expect any numbers from the boys.  Wait. That sounds totally self righttous.  Let me try that again.  I TRY not to expect any numbers from the boys.  I only expect them to do the work.  And if they do it…and the numbers don’t line up?  Not their problem.  My problem.  I will call the endo, and I will fix it. 

Here’s the deal:  If they do the work, more often than not the numbers will fall where they need to be.  And if the numbers don’t line up?  They shouldn’t feel guilt about it.  Sure, I’m not touching on how to get them to be consistent.  How can we do that without placing such importance on numbers?  What consequences will be doled out for not doing the work?  I think these answers are different for everybody.  That is why being a parent is so hard...figuring this stuff out can be frustrating at best.

If you haven’t noticed, this world has gotten a little more complicated than when we were kids.  There is a lot on my boys’ plates, even if we were able to take diabetes out of the picture.

If we can help take away the visceral guilt from the numbers on the screen, and then help replace that with the mechanics of how to fix the number, and the tools to find the right people to make consistent out of range numbers better…I think we could create a generation of empowered people with diabetes.

My 12 year old will be returning from 6th grade camp today.  When I check his meter’s history I won’t be looking at the numbers as much as I will be looking at the times he tested.  My discussion will be on frequency, not on number values.

Because any number is better than no number.

If I’ve learned anything from being the mother to a teenager with diabetes…I’ve learned that.


  1. You are wicked smaahhhhhht. You are.

  2. You are one brilliant mama!
    Also: I remember being a tween/teen and being so afraid of what the number would be and was on the screen, that I wouldn't test, or I'd outright lie.
    I wish I'd realized then that it wasn't about the number - It was about the numbers being my diabetes GPS coordinates - Telling my family and I where my diabetes was at that moment and what direction we needed to go.

  3. We are new to this but I try to tell my daughter...'it's not your fault' - the numbers are not her fault, she did nothing wrong. We are still working to get into range with the doctor and she hates when they increase but I keep telling her it's not because she is doing anything wrong. I think it's hard because she wants to control it and it just doesn't work that way.

    1. It does not work that way at all.

  4. K2 and other PWD's: what are we, as parents, doing that makes it seem like we're being judge-y re numbers? Is it accidental facial expressions?

  5. Good habits are important -- for everyone. It shouldn't be about what the number is, it should be about having a number in general. Knowledge is power and all that. But I hope parents realize that this isn't about transferring the guilt from the kid to the parent. Parents shouldn't feel guilty either over having to deal with highs and lows, because they happen. They just do. Even if a parent isn't judging the child, it's just as uncomfortable to know that parents are judging themselves. It's painful to hear some of the comments parents make about how they manage their child's diabetes. Sure, the child might be protected from the harsh realities, but that doesn't make it okay for the parent to do it to themselves.

  6. Lots of great advice here for parents and non-parents alike (though I wouldn't blame my mom for my numbers at this point in our lives).

  7. As humans, we want things to fit into our little molds of being in order, in control, "well-managed." That's not how this whole game is played. That's how many medical professionals think, because it's what medical textbooks tell them. It's what math formulas dictate. But yes, you have to show your work and prove the critical thinking skills are there. That's why story problems are so important. But at the same time, it's not how we're taught from diagnosis to think and it's why there even is a range of blood sugars to shoot for, because that reduces the risk of blah blah blah and so on. Life isn't a number, we're not a textbook formula, and it's so right to say that if we're showing our work, even if we get to the "wrong" answer, at least we're learning the skills to deal with whatever that unknown story problem will be down the road. OK, I'm out... no more philosophical and metaphoric D-Math. Meri, GREAT POST.

  8. Thank you, Meri! I was diagnosed long before finger stick testing. Then when I was 16, glucometers came out and the process of checking was about 5 minutes long (to get a semi-accurate result). I didn't want to test, and when glucometers became faster, simpler, smaller, they showed me scary numbers (that my former doctor used to shame me). It took years and the guidance of a very good doctor before I came to feel empowered by knowing my numbers. It sounds like your sons have a loving, learning force behind them with you in their corner.

  9. Allison, you are completely right! Except…when we become parents, it is an unavoidable, automatic thing to begin worrying incessantly and to blame ourselves for everything. Guilt goes hand and had with raising children. Often, that guilt is misplaced, and uncalled for…but it exists just the same. The trick is to contain it, and try our best not to project it onto our children. Logic helps. It just doesn’t always win.

  10. Excellent way to view this. Thank you!

  11. true, true, true. Nobody needs to be shamed into doing what feels the best for their bodies. I always feel more awful when Isaac's BG is super high or low because I know the cause is my inabliity to figure things out properly at that time. I do have to say however that recently getting Isaac to do the "work" has been quite the battle - he turned 6 and ever since it seems that when I mention it's time to get his BG checked he's off and running. He doesn't want to wash his hands or stand still for a bolus. He's antsy to get to whatever is next even when his BG is 30...lately my typically helpful child has been a bit on onrey side. I take this as a positive that he is feeling better in terms of his gut (post celiac disease diagnosis) but there are times when I know his BG is super low and he is running away and I have to chase him down and hold him in my gentlest hug and cajole him to eat or drink. Who knew?! I praise the heck out of him when he is helpful, but let me be the first to say that t1d and a little dude isn't smooth sailing most days right now! I just hope that all of the details we are trying to figure out during this busy time works out fine in the long run for his body. I never put that on him, but I know I feel the pressure of it on me.

  12. So, so true!!! You are a brilliant mama! :)

  13. Thanks for sharing. My son is six and has started testing his own finger. He can not do the math that is required for taking care of himself yet. I am glad that he is already wanting to take some ownership of his diabetes. He is inspiring and has only complained one time in his life. He has had diabetes since he was two and two years ago was also diagnosed with celiac disease. He takes everything like a trooper. I am a bit of a control freak so I know when it comes time to turn things over to him it will be hard. I have been pushing his A1C lower with every appointment and it will be hard to see that go the other direction when he starts taking care of thing on his own. This was a good read and will help me understand to not put that much pressure on my little guy while he is learning. It took me four years to get good at counting carbs so why would I expect anything less from him.

    Thank you Meri for sharing with us. You have had a tough time in your life and I do appreciate you sharing your joy and pain and knowledge with everyone to see.



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