Hidden Costs

No matter what side of the political fence you find yourself on, one thing is certain: there’s political talk in the air. In our house, we listen to NPR in the morning as we get ready for school and work, and we talk about politics at dinner. Our kids go to an excellent public school and hear about politics on CNN 10 and through their weekly Scholastic Readers. Their classes even held mock elections this past November.

Our kids have been asking a lot of questions about politics. They want to know what a bill is, how to become president, and who makes the laws. They want to know what laws will affect us and their friends.

Because our son has type 1 diabetes, we’ve been following the repeal and replace ACA discussion closely. The ACA isn’t perfect, but it’s pretty clear that the ACA has provided access to healthcare for people who have been living without adequate coverage.

We are lucky enough to have private health insurance, but pre-existing conditions, lifetime maximums, and the ability for our son to stay on our insurance until he’s 26 are important issues for us, so we’ve been writing and calling our representatives to tell them about our story and encourage them to protect access to healthcare for all. Henry and his sister wanted to help, so they wrote a post card.

Explaining complicated issues that our country can’t agree on to a child is tricky, because the parent needs to explain the issue fairly and clearly, illustrating something complex in a way the child will understand. To most kids, the issue is pretty simple: sick people need medicine, so they should get the medicine. How do you talk about profits, risk-pools, or poverty begetting poverty?

Like I said, we’re lucky to have the insurance we do. In 2016, I decided to quietly keep track of the money we spent caring for diabetes, but I stopped counting when we crossed over $2,000 in May. I didn’t tell anyone about the total. I stopped because the figure made me feel fortunate and guilty at the same time. For many families with type 1 diabetes $2,000 may be a monthly or bi-monthly cost. Without the ACA, these costs would be higher.

A few days ago, Henry brought his papa $35 dollars, which he’d been saving for a really cool Lego set, and said, “Here papa, take this. I know health care is expensive.” Pretty simple: when someone needs something, you give it to them.

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Diaversary 3

Henry’s diaversary comes the day after my birthday.  His diaversary always makes me feel a bit glum, because it’s easy to imagine what life was like before diabetes: just eating without counting carbs or dosing insulin, sleeping through the night, or worrying about long term side effects. But if I’m being honest, that life—life without diabetes—is sliding further into my memory each season.

It’s Henry’s third diaversary, and it’s the first diaversary that marks the fact he’s lived longer with diabetes than without it. Yet, he doesn’t need a date on a calendar to tell him that.

Recently at a restaurant, the pre-bolus of insulin started working dramatically on Henry’s blood sugar before the food arrived. I couldn’t reach him to check his blood glucose, so Henry reached into his d-bag and got out his meter.

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He laughed, then said, “Mama, I’ll check my blood sugar. I’ve had diabetes already for three years.”

So diaversaries are about the big moments, like marking another year of living with diabetes, but really, diaversaries are about the thousands and thousands of small moments—going without, waiting, measuring, but also unexpected sweetness, like eating jelly out of the packet while you wait for your food to arrive.

So here’s to another year of the highs and lows, too much, too little, and resting in the spots inbetween.