The Big Picture
By Kim Evanovich
My nine year-old son, Shane, has been diabetic for four years this June. It seems like forever. I honestly cannot remember a time before shots and meters and blood tests. I know that for five years my child lived a relatively carefree life, but I just can't remember it. Neither, thankfully, can he. To him, diabetes is as much a part of who he is as his sandy brown hair and his love of math.
Of course, this is a lot better than if we sat around all day remembering how great it was to skip dinner or eat a giant hot fudge sundae. But it is sad also, that he doesn't remember a life before diabetes.
Our story is fairly simple. My son's biological father is diabetic, so we always knew where he got it from. When he was really young he resisted shots and blood tests and spent a difficult year or so out of control. Then we met a great pediatrician who helped us (mainly through education) get everything back on track.
For over two years now Shane has had A1C levels between 6 and 8. He does his own shots, tests his own blood four or five times a day, eats well (more or less) and gets a real kick out of demonstrating his diabetes treatment (shots, etc.) for his friends. His most recent accomplishment is getting his blood drawn (for his A1C) without having a hysterical fit.
Shane has never been hospitalized (aside from when he was first diagnosed) and he has only had three severe low sugar situations, all of which were resolved easily. He goes to diabetes camp each year, and in the fall is going to be playing Pop Warner Football.
After trying three schools, we finally found one with a supportive staff that encourages Shane to test his blood during the day, is wise to his tricks ("Oh, I feel low, can I have a cookie?") and calls me at the end of the week with his daily blood tests.
Shane has tons of friends, does very well in school and wants to grow up to be a brain surgeon ("because it's cool to see the inside of brains, and I want to help people who are sick"). In keeping with his future health-care goals, he has visited newly diagnosed diabetic children in this hospital to offer support and encouragement (and to play video games with them!)
I am shamelessly bragging about my son to illustrate a point. If you look at the above evidence (the "Big Picture") Shane is an excellent example of good diabetes control. But only yesterday I found four fruit snack wrappers and one empty juice box under a pillow cushion on the couch. Shane's blood was at 287. After I had him inject two extra units of Regular before dinner, he declared that he wasn't hungry and hated spaghetti anyway. To which I said, "Of course you aren't hungry, you filled up on sweets. Now, you are going to eat the dinner I made because if you don't eat something you will have an insulin reaction." To which Shane replied, "I hate being diabetic!" and ran to his room. Later, he came back out saying he was low and wanted me to make him a hot dog.
I gave him some bread and milk (included in his dinner which was still on the table) and told him that I was not making him another dinner. The family ate spaghetti, and he was going to eat it too.
This is not easy. What he wants me to do is to cater each family meal around his tastes, or make several dinners (we have four children, if Shane got to eat what he wanted, I'd be listening to cries of "no fair!" and would be running a cafeteria in no time).
But part of me wants to comply. I honestly don't think it's fair that he "has" to eat, and I want to make eating as pleasurable as I can for him. Of course, I know this wouldn't be doing him any favors. If he thinks he can "use" diabetes to manipulate me (as he used to) things will quickly speed out of control. I've already tried it and I know; it is impossible to draw the line once you have started making exceptions. So I treat him like the other kids, but like I said, this is not easy.
I'm sitting there knowing he is low, knowing he is hating diabetes, knowing he thinks life is unfair, and wanting to go make him a hot dog; holding my position and holding my breath . . . sheer torture. So by now my confidence is at zero. I'm thinking: we don't have diabetes under control, it has us. First he has sticky thick blood, now he has too much insulin in his blood. His arteries are being damaged right this minute. His eyesight is being effected. I start worrying about that cut on his leg that hasn't healed quickly enough, and that this is why he gets all the flea bites when no one else does, and why did he grow and inch and not gain any weight in four months? A half an hour passes. Shane has eaten most of the spaghetti, all of his salad, the bread and the milk and had a banana. He comes in to watch TV as if nothing happened. His blood test an hour later is at 146. Perfect for his "before bed" value. Whew!
This happens. Not as often as it used to when we were first diagnosed, but it still happens. I think it will happen more as he enters his teen years (I can hear it now . . . I say, eat your dinner and he says, "Make me!")
In any case, you think I would have learned to keep my eye on the big picture instead of obsessing about every little minor set back we have. The Big Picture is what is important in managing a diabetic child. This is what I tell the newly diagnosed families that I meet. Look at your A1C's, look at how well your child accepts his condition, look at his overall health and your relationship with your health care team. If you need to obsess, get yourself a weekly average and obsess about that. But let the little problems go. If you have a bad day (or night) start the next day fresh. Black out that day in your log book and move on.
Unfortunately, I am not so good at practicing what I preach. I think it's a "mom thing." I worry about my other kids in the same way, to tell you the truth. But Shane is a pro at "moving on" and it is his condition, after all.
Keeping your eye on the big picture is still the best advice I can give other parents of diabetics. It's hard to do, but the great thing about it is, every day you get another chance to do it right. Aside from a cure, what more can you ask for?
Kim Evanovich is mother to Jillian, Shane, Celeste and Devon; wife to Mike; cat-mommy to Sage, Thyme and Oregano; and proud owner of three living houseplants; emails are welcome! firstname.lastname@example.org.
Last Updated: Wednesday March 16, 2005 15:44:54
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