The Persnickety Pancreas

Today, those of us following D-Blog Week are encouraged to tell you what we think you should know about diabetes. That’s a loaded question.

Like so many others are saying in their posts today, I want you to know that living with diabetes is HARD. We do it. We make sacrifices of convenience, money and sleep. We have no choice. The simple truth is that if we do not, our child will not survive.

I want you to know that while Type 1 diabetes does come with set formulas and a specific format that needs to be followed, there is no moment of arrival. This is a disease of constant flux. Sometimes when you follow all the rules, you get good results. Sometimes when you follow all the rules, you get crazy results. You can follow the rules and have days or weeks of stable numbers, and you can follow the rules and see very little rhyme or reason. Type 1 is not a disease where, if you test and take insulin, things are fine. That makes things livable, but the one constant about diabetes is that it will change. Like Mad-Eye Moody, the battle cry for us is “Constant vigilance!”

I want you to know that while modern medicine has made it so those with T1 can live long healthy lives, diabetes could steal my sweet boy away in a moment. One mistake in calculating an insulin dose, one time too many of saying “I know you feel low, I’ll check you in a minute”…it can be deadly.

While I don’t wish that you would experience this, I want you to know that I test Ethan while he is sleeping and think, “What if he doesn’t wake up in the morning? What if I found him just like this? Would I be hysterical? Would I scream? How would I tell his sisters, and even more horrifying, what if one of them found him instead of me?” Perhaps you think such thoughts are extreme exaggerations of a mother who worries too much. They are not. They are a reality.

I also wish you could see the quiet moments of diabetes. The sweet, tender moments. The quiet moments of a quick kiss and a whispered, “It’s ok – you’re up in a safe range now – go back to sleep.” The moments when we celebrate small victories and say, “I’m proud of you for how you’re handling all of this.”

We press on.

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well!

I think most moms have a hard time seeing the things we do well when it comes to our kids. As the mom of a child with T1, I see Ethan’s A1c as a direct and very personal reflection of my diabetes management skills, my parenting and of course, ME as a human. Ridiculous, I know, and I remind myself at each appointment that it’s simply a benchmark to let us know where Ethan has been. But I do think most D-moms understand.

Needless to say, today’s prompt is a hard one to answer. One thing that I have always done well in Ethan’s care is to keep meticulous records. I record every blood sugar and make notes when there is something unusual. For example, if he was 350 at bedtime but I know he just had a big snack, I make note of it (as opposed to being 350 and having no idea why). It was a sad day for me when I filled up our first Lilly Log Book!

As for Ethan, he always tells me if he feels like he might be high or low. I think the thing he’s best at, though, is that he never complains about diabetes. Surely he must want to sometimes – I know I do! But he never does. I suppose some would say that isn’t healthy, that he should be giving voice to his feelings. I hope he will when the day comes that he is fed up with this disease, for I am sure that day will eventually come. For now, he simply carries on living.

I hope that never changes.