Bisi’s diabetes honeymoon ended a little more than a year ago. But a recent email from a reader seeking advice about how to keep his son honeymooning reminded me of the tenuousness of this time—and of my mix of relief and sadness when I realized it was finally over.
The relief came from the realization that we no longer had to be striving all the time to preserve her honeymoon—making her have lots of pancreas-bolstering vitamin supplements; always bringing gluten free and low carb alternatives for her to friends’ birthday parties and school events; feeling guilty that if she spiked high one night we were burning through what remained of her beta cell capacity.
The sadness came partly from the fact that, as her tolerance for carbohydrates shrank, her disease became harder to manage. Whereas before she could get away with having a 15-carb yogurt before sports and not need any insulin, now, with her insulin needs higher, we find that we are correcting more highs and more lows than we were before. Essentially, the disease now feels less forgiving. If we’re out at a restaurant and we overestimate or underestimate by 10 carbs what their dish of chicken pot pie is, that miscalculation can have a dramatic effect on her blood sugar, which can go up more than 100 points from ten uncovered carbs.
But I think where the sadness really came from for me was that I could no longer see Bisi’s diabetes as different from anyone else’s. When Bisi was first diagnosed and her doctors told us about the possibility of a honeymoon period, they told us that if she had one, it could last a couple weeks, or a couple months, or maybe, very rarely, a year. So as her honeymoon crept towards the year mark, it was hard not to hope that maybe her diabetes was different. Maybe we would even be able to keep her honeymoon going? (For someone who HAS found a way to keep her son’s honeymoon going, read this) Even though Bisi’s diagnosis was type 1 diabetes, for much of the first year her Lantus dose per day was a small ½ unit—or sometimes no Lantus at all; her carb ratio was over 60, so often she didn’t even need to take insulin with meals and snacks. So in some ways the diabetes didn’t feel like REAL diabetes.
Now we know it’s real, and it feels real too. Not to mention that the insulin pod and CGM sensor on her body immediately mark her as someone with type 1 diabetes. But importantly, I don’t think Bisi felt the same sadness we did at the end of her honeymoon. We’re more relaxed now about what she eats; she prefers the pump to injections (and for a while she couldn’t go on the pump because her insulin needs were too tiny); and I don’t think she ever deluded herself (unlike Mark and me) that her diabetes was ever different from anyone else’s. For a young child, I don’t think there are degrees of diabetes. You either have it or you don’t.