WRITTEN BY: Steve Gilbert

Nighttime sometimes is the hardest. In the dark you wake; you think of her. Maybe you get up and check her blood sugar, 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 instead of rising, you lie there in bed thinking and wondering and tossing and turning, watching the clock, waiting for something of a less pathetic hour to be awake. There is certainty in rising though and while there’s no immediate cause for worry, you cannot be sure of ever getting back to sleep until you know without doubt she is safe. This is the life most parents of children with diabetes face. Sacrificing their own needs, in this case sleep, at the risk of burning out, to tend to a task or simply for just peace of mind.

If there is a wall, and there is always a wall, we climb over without even thinking.

I know how that might sound poetically cryptic, but there are thirty-seven trillion cells in a single human body, and the thing about parenting is we care more about the ones that make up our children than we do our own. Burnouts. Avalanches. Boundaries. Those are states of mind and limits for which others — even Lia, perhaps — must worry. But with parenting there can be no limit. There is only what is and whatever else must be done.

This is what can happen though: Imagine a frog and a pot of cold water. The frog is swimming around, when a fire is lit under the pot. The water begins to heat up and though the frog finds this rather unpleasant it keeps swimming because that is what a frog does. It swims. Were it to stop, the ripple it makes in the world would cease to exist and calamity would surely follow. As the temperature rises the frog begins to tire. But it does not panic, because though the water has changed it is still water and water is home to the frog, so the threat must be set aside. Eventually the heat comes to a boil and only then is the frog aware of the danger, but now it is too exhausted to marshal any hope of escape.

That the frog faced destruction from the very thing that it loved is a topic for some other time, but what is worth noting is the fact that danger can lurk even amidst the places we feel most safe. In our homes, in our relationships, and especially in ourselves. But fortunately, unlike the frog who failed to listen to its inner self, we are not, as columnist David Brooks so eloquently points out, “primarily the products of our conscious thinking. We are primarily the products of thinking that happens below the level of awareness.”

The unconscious mind is the foundation of character.

Take this for example: Several years ago, only a few months after Lia’s diagnosis, just before one in the morning 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 her mother applied a wad of tissue to her nose to stem the bleeding. After a few seconds, Franca left to retrieve Lia’s glucose meter from her bedroom, and I helped Lia to sit on the floor and I 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. Then Franca came back and checked her blood sugar, and she was.

“Did my nose bleed because of diabetes?” Lia asked us.

“I don’t think so,” her mother responded. Diabetes was still very new to us.

“Oh,” Lia replied.

“Why do you think it is?” I asked.

“I don’t know,” she said, “But today at school we had a birthday party.”

“I remember,” I said. “We talked. I told you what to bolus beforehand. How is that connected?”

“It’s not,” she said.

We all three smiled at the loopy course of this late night conversation. A phantom discourse of inner minds.

“So, how was the cake?” I said to her.

“Not good,” she said.

“What did you do about it?” I asked.

“I ate it,” she said.


“Because I had to.”

Awareness. Evaluation. Adaptation. These are the walls that parents of children with diabetes must deal with, not some looming obstruction encountered at the pinnacle of some long journey.

It’s a bloody nose. A birthday party. It’s a tasteless piece of cake. It’s managing a disease thirty-seven trillion cells removed. So that when trouble sneaks up, it does like that pot of boiling water, jarring and without any notice, and it leaves you empty, speechless, exhausted. I know.

Because I had to.

How do you respond to that? How do you look at that face and say, “It’s late. Can we table this for another time?”

You don’t, that’s how. Because these are our children; they matter enough to spend the extra moment. So you say to them, “I’m sorry,” and maybe afterwards, after they’ve gone back to sleeping, you shed a tear or two; maybe promise yourself that tomorrow you’ll go for a run or lay off the coffee or meditate, anything to take your mind off this most recent occasion. But the truth is your unconscious-self, the inner most you who helps you to love and flourish, is already hard at work to give tomorrow a fresh new start.

You only have to learn to trust it.

Editor’s Note: In 2012, the Gilberts sat down and collectively created a family manifesto. This process involved a deep discussion of what mattered most to them and resulted in a family mission statement, plus ten other core values that remind them of those intentions they believe most important. This manifesto sits on the shelf beside their dining room table. They call it their Unconscious. If you’d like to view it please visit their website. 

Read Steve Gilbert’s “The Wild Blue Yonder.”


Steve Gilbert

Steve is a writer, husband and father of three, the youngest of which, Lia, was diagnosed with Type 1 in 2009 at the age of eight. Since then he has shared their story on the blog, Without Envy. Steve has served on his chapter’s executive board of JDRF, with his contributions embodying the spirit of community, outreach and raising awareness. He is also a novelist and serves as the Director of Operations and Social Mission for a small, friend-owned, natural products company operating out of Raleigh, NC. He, his wife, Franca, and family enjoy being outdoors, backpacking, cooking, and living a sustainable, health-conscious life. In 2013, they hosted a foreign exchange student from Germany who also has Type 1. Zuza has become like another daughter to them.