A Fair Goodnight

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.

7 thoughts on “A Fair Goodnight

  1. Kids with Type 1 learn a hard life lesson much earlier than many other children… their parents can’t fix everything like they once thought. Thinking about that made me very sad. Have a cold? No problem. Have an ear infection? No problem. Diagnosed with Type 1? Now we have a problem. We are two years in and it still stinks.

  2. It quite unfortunately never ends, as all those preceding me have confirmed. Having just passed the three year mark, however, I would say that getting through the first year – the year of all the firsts – is a big milestone. I don’t know if it gets better after that, but it is a little easier to cope. Karen said it all – knowing that we are not alone makes all the difference in the world. Thanks for being part of that support system for me. All the best to you.

  3. I can only second the lovely comments from Penny and Karen. Accepting it, truly accepting it, must take a long time. I am eighteen months in and I am doing so much better but still struggle. Peace of mind is hard to come by and nights are long. I confess here that I drink a pot of green tea every evening at the moment to guarantee I need to get up in the night. Then can check Frank is breathing. Whenever he sleeps in I am convinced he has died. Everythihg seems to tenuous.
    But daylight comes and the sheer force of life of this child hits me and I relax.
    I cannot stress enough that these are hugely early days. I have a friend who has had T1 for more than 15 years and she keeps reminding me how these are the early days.
    You and Franca are doing an amazing job and are so mindful of getting it right.
    My boys and I send big hugs to your whole family. As usual you have put into words how I feel most nights. There is much comfort in this shared experience.

  4. What a poignant post Steve. It doesn’t end. That’s the crux of the whole darn diabetes. It makes our children age before our very eyes, in ways that hurt. My daughter shoulders so much for 7. The worry about her and the D doesn’t end.

    I do know that I have the strength to do this. I do know that there are T1 adults out there, diagnosed at age 6 like my gal, who live wonderfully healthy lives. I have hope. For me, it counters the worry.

    Lia is lucky to have you and Franca. She is lucky to be in such good care. She is building reserves of care and confidence and knowledge that will rise up within her. I know it’s hard to tell you that it will all be ok when it feels like it’s anything but. It is what it is I tell myself and that is ok, that it is what it is. But, while it might not be ok, but it will, it truly will, all be well.

  5. My heart’s so very torn reading this. My T1 self thinks “What a tough little kid – she’s going to be fine”…and the rest of me aches and thinks no 8-year-old should have to be so old.

    It doesn’t end, absolutely not, but I often find it a consolation to know I’m not alone in this. Lia’s lucky to have you, and when she’s ready she’ll have a whole community waiting to embrace her with open arms.

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