A Fair Goodnight

Steve

Nighttime sometimes is the hardest. You wake, you think of her. Maybe you get up and check her blood, or just feel her shoulder and listen for breathing as you might a newborn. A slight nudge perhaps if you’ve caught her in a long mid-breath. Maybe you lie there in bed thinking and wondering and tossing and turning and watching the clock, waiting for something of a less pathetic hour to just go ahead and get up. There is certainty in waking, and while there’s no justifiable cause for worry, other than her diabetes, you cannot be sure of ever getting back to sleep. If there had been good reason to be concerned we’d have set our alarm and one of us would have been up anyway to check her blood. But when you go to bed thinking all’s well, we licked it today, we managed, there is a feeling of peace that comes over you and the nighttime you think will be restful and spent sleeping.

A few days ago it was just before one in the morning when she woke us. She was standing at the bedroom door, a small dark shape backlit by the nightlight in the hall. She was crying, sputtering through the sobs about a bloody nose. You could just make out in the darkness the little figure with both hands cupped to her face. We were both awake immediately. Franca walked her to the bathroom and in the light we checked her over.

The tiny bowl she’d made with the palms of her hands were pooled with blood, so I ran them beneath the faucet while Franca applied a wad of tissue to her nose to stem the bleeding. After a few seconds, she left to get a damp washcloth, then retrieve the glucose meter from another room, and I sat Lia down on the floor and leaned her back against the tub. The bleeding had stopped and she had stopped crying and the panic in her too had subsided. She closed her eyes and looked ready to fall back asleep. I washed from her face the smears of blood and asked how was she feeling. She knew what I meant and said fine. Franca came back and pierced her toe and checked her blood sugar. And she was.

We put her in our bed and laid next to her. The worry was over but not the response as we both found it difficult to return to the sleep we’d been lost in twenty minutes prior. Was the nose bleed somehow related to her diabetes, a warning sign that we should not take lightly, or was it dryness caused by high pollen? What if the meter was wrong? What if the reading was trending down and if we didn’t do something about it now she’d suffer a low? How much longer should we wait until we tested it again?

Honestly though, it wasn’t even these questions that kept me awake. These were things we asked ourselves everyday, all day long. We work very hard to anticipate and address these questions and are learning ourselves out of necessity to work just as hard on getting rest. You run yourself ragged if you don’t. What kept me awake was the fear that the fright and the hurt and the worry of something going wrong wasn’t ever going to go away. It is something that is with us for good, unlike a newborn which grows and flourishes, the same as a parent’s confidence. What kept me awake was the cruddy and erroneous suggestion that something as commonplace as an allergy-induced bloody nose might forever be connected in Lia’s precious mind to her diabetes, simply because we had tested her blood. The same as we do when she eats, or plays sports, or stays over at a friend’s house, or feels miserable or looks tired or generally acts something other than her usual illuminating self. What kept me awake was the wonder of just where does it all fucking end?

I know the rejoinder, it doesn’t. We’re not strangers to this anymore. I get it, this is the way that it is. But hold in the palm of your own hand this little girl’s life and tell me that that is okay. Tell me that we can control it. Tell me that it gets better. Even peace of mind can prove sinister sometimes in its motives. Lia is catching on to this fact and to some extent that is good, she needs to be burdened with the knowledge that to stay healthy for every decision she makes there is a consequence. But this awareness comes at a cost that as a parent I am saddened to see her pay.

Take for instance, this valuable diabetic lesson: This past weekend she was at a friend’s birthday party. Like before, I had her call and tell me what she was having to eat. She said pizza and ice cream cake, and I dosed her for both. Later, when I picked her up I asked how she liked the cake. She said she didn’t. I said what did you do about it then. She said I ate it. When I asked her why she said because I had to.

T1D

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