Monday, April 11, 2011


Diabetes is such a challenging physical disease. Pricks, prods, pokes, highs, lows and everything in between that hurts or feels horrible. But the mental aspect is huge as well, on parents and kids. It's constant stress and worry...I'm pretty sure the last two years have aged me about 10.

Leah's always been the type of kid who worries more than others. Just enough of a nervous personality that it actually makes some aspects of diabetes easier for her. She's a rule follower and eager to please, so she likes to take as much of an active role in her care as she can as a 6 year old. But she also goes through many bouts of the insistent "I feel low"s, which at times can totally interfere with life.

It's been happening a lot at school lately, and usually also at bedtime. Her CGM always displays her current blood sugar, but at her age it's tough for her to interpret. There are days when she spends a good amount of her school day in the office, insisting she doesn't feel good even though they've checked, double checked, pricked her finger, and called me to see if there's anything else they should do. And there's the bedtimes when she's up 5 times in the the course of an hour insisting she's low when in fact her blood sugar is just fine.

It's tough--I don't know what changing blood sugar feels like, so I'm sure there are times when she just truly doesn't feel well regardless of what that meter says. But what I hate is the fact that diabetes is taking up that time in her life. She should be in the classroom, learning, and not worried that she's low. She shouldn't have to think about this stuff, and the anxiety it causes makes me mad.

Leah's chart
We try our very best to help her learn, with the goal in mind that the more she knows, the less time she can spend worrying about diabetes. I made a number chart with the categories "High", "Low", and "In Range" so hopefully she can begin to interpret what all those crazy numbers mean. We remind her if she doesn't feel good to always check her pump first and see where she's at, if there's any arrows, etc. But that's all a lot for a kid her age to understand.

We attended a diabetes expo this weekend that Leah's endocrinologist organized, and attended a session with Jill Weissburg-Benchell, an awesome child psychologist who specializes in diabetes. She is at Children's Memorial in Chicago and we met with her at our initial diagnosis. Her outlook is fantastic--she acknowledges the many challenges kids face cognitively and socially during adolescence, and how difficult any single aspect of that time can be. Then you throw diabetes on top of it all, and there's just some days or situations that are too much for any kid to take. There are days kids will be mad at the world, or worried beyond belief, or just plain tired of it all. It was a good reminder to try to see things from your child's perspective and not give them more than they can handle.

On the way home tonight, Leah said from the backseat, "I don't feel good and my number is 144 with a down arrow." I was proud of her for checking her pump first, and figuring out why she felt crummy. Would I be proud of her regardless of her remembering to do that? Absolutely. I don't want her to take on more than she can handle. So we'll follow her lead and help her learn along the way, with her well-being, both physical and emotional, being the most important thing.

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