It wasn’t hard to find my son: tell the guard my name, slink through the swinging doors, gravitate toward the people who looked like they drove three hours through a blizzard to get here. I must have walked like a dad, because when I got to his ER room the cluster of onlookers made room for me. Some glanced my way with grin-and-bear-it faces, eyes narrowed and lips pursed. You’re in for it, those faces said. Or Glad it’s not me.

In the middle of the room lay Lucas, all nineteen pounds of him, strapped to a gurney and thrashing as he screamed for his life. I saw every single rib. Saw tubes all over him, including one in his temple. He didn’t acknowledge me when I snaked my hand under a tube and lay it on his belly. I caught his eye for a second, but I probably could have been anybody. 

“He’ll make it,” said an EMT across the room, packing up her gear. “You missed the worst part.” Then she kissed her fingertips, touched my son’s forehead, and whispered “Good luck.” Some people in the cluster wandered away with her and others went about their business. Once Lucas and I were alone, I gave him my fingers to grab. He squeezed down, calmed for a moment, then went back to thrashing and screaming. 

So this is it, I thought to myself. This is what it looks like when death has a hand on your throat and you’re fighting back. In that moment, my ten-month-old son became my biggest hero in the world. 

“Keep fighting, little man,” I said. “But you don’t need daddy to tell you that, huh?”

 

*    *    *

The phrase His life is in your hands took on a frighteningly literal significance two mornings later as I sat in a classroom with my wife, Jen. At the Barbara Davis Center for Childhood Diabetes in Denver, we first became acquainted with the absurd level of vigilance we would have to maintain merely to keep Lucas alive: finger pokes to test his blood glucose level every two to three hours, four or five injections a day, short-acting and long-acting insulins, ketoacidosis, glucagon and when to use it, signs of possible coma, the difference in urgency between lows of 72, 52, and 32, etc. 

Your blood sugar, by the way, is probably between 80 and 120 right now. Unless you’re diabetic yourself, in which case you know exactly what I’m talking about. 

Jen and I have our squabbles like any couple—she’s a creature of the moment, I’m a planner-outer—but necessity dictated that we start playing like a team immediately. We had asked for parenthood, hadn’t we? Well here it was, in full, inescapable force. As a team, though, we played like rookies who couldn’t even agree upon what the game was, or even what language to speak. We got into our biggest argument ever—ever, not just in the post-diabetes era—about whether to give Lucas 0.15 units of insulin or 0.155 units, a nearly inconsequential difference. 

Nothing we did seemed to matter, because at that point the beta-cells in his pancreas worked like a fritzed-out sportscar: sometimes they fired up like champs, giving his body the insulin it needed to digest carbs, and other times they wouldn’t start at all. We could give him the same exact dose of insulin for the same meal on two different days—starting from the same blood sugar, too—and two hours later he could drop to 44 or jump to 418. 

We asked our endocrinologist if he could make sense of our meticulously-kept charts of blood sugars, insulin dosages, and carb intake. “No,” he said. “And you can’t expect to, either.” 

But we spent hours staring at those charts, trying to spot trends and strategize as we waited for Lucas to cry in his sleep. He had a “low sugar cry” (which meant he needed juice) and a “high sugar cry” (which meant he needed insulin), and we convinced ourselves that we were slowly getting better at discerning the difference between them. Still we made mistakes, we misjudged, we forgot things, and we castigated ourselves for every high or low. 

We are not bad parents, we kept reminding ourselves. Bad parents let their diabetic kids have highs or lows and don’t do anything about it. That’s not us. That will never be us. 

Jen and I have a favorite picture from those days: us sitting next to each other with Lucas across our laps as I give him a shot in the tush. Lucas has a genuine smile; he’s with mom and dad, after all, and he’s still alive. Jen and I look greasy, and our faces are plastered with maniacal smiles that appear false but really aren’t. Our friends and even our family told us to stop smiling so much, stop acting so grateful that our child had survived and admit for once that our situation truly and deeply sucked. 

And we did that, believe me. At night we would head outside with the baby monitor, bitch and moan about diabetes, and smoke clove cigarettes until they made us sick—or until Lucas screamed, whichever came first. We could have done our bitching in public, but what would that have gotten us? A child who pitied himself over diabetes, and that’s the last thing we wanted. People thought we were simply putting on a false front to survive the situation. It was a front, to be sure, but it wasn’t false; with a child who had nearly died and an incomprehensible disease to battle, we had no choice but ferocious optimism. 

If those friends and family had been at Children’s Hospital with us, walking the halls and seeing the faces of the kids who would die there, maybe our special breed of optimism would have been easier for them to take.   

*    *    *

I didn’t think about our marriage much those first few months, and I don’t suspect Jen did either. We had a job to do, and it consumed whatever time we might have allotted to checking in with ourselves and with each other. Humility is supposedly a crucial ingredient for good marriages, and maybe we got enough of that—in the quantifiable form of out-of-control blood sugars like 42, 58, 487, and 556—to feel like we didn’t have to worry about the other ingredients for a while. 

But once we settled into our new routines, we started talking about other things than diabetes: what we could do to make life easier for each other, what we wanted as individuals now that our lives had been turned upside down and shaken from their moorings, when to have another child, etc. We had always envisioned ourselves as having two kids, two years apart; if we wanted to stick with that plan, we had to get the second one cooking soon. 

“What if we knew it would be diabetic?” one of us would ask periodically. And the other would respond with stock phrases like At least we’d know what to do, or Worse things can happen to a kid. But that second child remained a concept, hanging in midair above our heads, until we almost lost Lucas again. 

When he was fourteen months old he came down with a stomach virus—the usual vomiting and diarrhea that any parent has to deal with, exacerbated by low blood sugars and extremely high ketones. The best way to treat ketones, which cause the ketoacidosis that had nearly killed Lucas four months earlier, is with insulin, but that would have driven his already low blood sugars toward coma-inducing levels. The diabetes center said he needed IV fluids, so we brought him back down to Children’s Hospital; due to a series of medical miscommunications, he had to wait three hours before he got his IV. In the meantime we tried to keep his sugars above 50 by forcing down juice that he promptly threw up—exactly what we had been doing at home. 

After much cajoling, we finally got clearance for an IV; by morning Lucas’ ketones were normal and his sugars above range, so the time came for a dose of insulin to see how he responded. Despite being told multiple times that we used a 10% dilution of insulin, the nurse gave him 3.0 units instead of the 0.3 units that the endocrinologist had ordered. Thankfully we noticed the discarded wrapper for the insulin bottle—red, which meant undiluted, which meant that my son had just been given a massive, lethal overdose. 

I had to get belligerent to make people listen to me; I was just an angry, pathetic parent, after all, and they were medical professionals. We demanded another blood test, and those medical professionals discovered what Jen and I knew by sight: that Lucas’ blood glucose had dropped precipitously, from 275 to 51 in just fifteen minutes, and that he needed more sugar than he could possibly ingest by mouth. It took six hours of dextrose mainlined into a vein to get him back up to normal, at which point we thanked the staff and got the hell out.  

“You’re sure you want to have another one?” Jen asked when Lucas finally fell asleep in his car seat.

“Hell yes,” I said. But the words I couldn’t say then, and couldn’t say until months after our second son, Landon, was born, were Yes I want another one, just in case Lucas dies. Because there’s something about watching the fruit of your marriage swing on its tree and almost drop that makes you want a whole tree full of fruit. That makes you want to fill your basket past the brim, just in case one of those fruits doesn’t make it. 

I wanted four kids, eight kids, a dozen. Fifty. Then I pulled into our driveway and cried.