The Midnight Battle: Our Life with Type 1 Diabetes

Maybel and Daddy - Prime Covid era- Appointment for Maybel's insulin pump in Vermont. Maybel and Dad hanging out in the lobby, watching the toy train.

There’s a special kind of exhaustion that comes with managing a child with type 1 diabetes. My daughter, Maybel, was diagnosed at just 11 months old, and ever since then, sleep has become a rare luxury. She should be sound asleep at only 4 years old, dreaming peacefully through the night. But for us, the quiet hours are anything but restful. Instead of drifting off, I lie in bed listening for the next alarm, waiting for the next moment I’ll need to spring into action.

The nights are long, and they are relentless. Every few hours, the alarm on her continuous glucose monitor goes off, sending me into a panic as I fumble through the haze of interrupted sleep. It’s like being on autopilot. I’m not really awake, but I have to function as if I am because this is critical. One wrong step, one delayed response, and the consequences could be severe. I drag myself out of bed, check her numbers, calculate the right amount of insulin, or scramble to get her to eat or drink something if she’s too low. Every decision feels monumental, but making those decisions on very little sleep? It’s incredibly hard.

2:56 am Alarm - High alarm, mom checking to see how much insulin is on board and if a correction (more insulin) is needed.

There are nights when I feel like I’m walking through fog, barely able to think clearly. Yet, in those moments, clarity is exactly what’s needed. Managing blood sugar isn’t as simple as pressing a button and going back to sleep. I have to consider how much she’s eaten and when she's eaten, what type of food she ate, if her insulin is still working, or if her levels are fluctuating in unexpected ways, due to illness or insulin pod issues. It's an intricate balance that demands attention at all hours, but in the stillness of night, it’s just me, the numbers, and a deep sense of fatigue.

Pod failure: The cannula popped off her skin, so she wasn't getting the insulin we were administering. This happens often as she is an active little girl!

The exhaustion is overwhelming, not just physically but emotionally. Some nights, I feel like I’m running on fumes, trying to be everything Maybel needs while knowing there’s no real break. The stress of it all compounds because I know this isn’t temporary. Unlike when you’re dealing with a newborn, there’s no point where Maybel will outgrow this phase. Type 1 diabetes is forever. The midnight interruptions will continue, the constant monitoring won’t stop, and the weight of responsibility never really lets up.

And then there’s the well-meaning but sometimes unhelpful advice from others. Our family and friends are supportive, and I know they want to help. But unless you live with type 1 diabetes, it’s hard to grasp how much it shapes our lives. Sometimes people offer suggestions like, “Can’t she just eat less sugar?” or assume that she’ll “grow out of it.” These comments highlight the widespread confusion between type 1 and type 2 diabetes. But Maybel’s condition is an autoimmune disease—her body doesn’t produce insulin, and no amount of diet changes or exercise can fix that. This is our reality forever.

It’s not just Maybel’s life that has changed. This diagnosis has taken over our entire world. Every decision we make, every plan we create, revolves around her blood sugar management. We try to be there for each other and for our kids, but the weight of constantly managing this disease can feel overwhelming. Our lives are split into “before diabetes” and “after diabetes,” and the stress is constant. Even in moments when we try to relax, our minds are never far from her insulin levels, her glucose readings, and what might happen next.

It’s especially hard because while Maybel needs such intensive care, we also have her 5-year-old brother, Magnus, to think about. He may not have the same health challenges, but he still needs us just as much. We’re not only managing Maybel’s diabetes through sleepless nights and exhausting days; we’re also making sure Magnus gets the love, attention, and care he deserves. Balancing the needs of both children is a challenge, especially when the fatigue from Maybel’s care makes it hard to keep up with everything. We’re always on alert for her, but Magnus’s needs don’t stop either, and it can feel like we’re being pulled in two directions at once.

Every night is a battle of its own. Sometimes, it’s just one or two interruptions, but other nights, it feels like I never truly fall asleep. Maybel’s blood sugar may be particularly stubborn—staying too high or dipping dangerously low no matter how much I adjust her insulin. Those nights are the hardest. They’re filled with panic, frustration, and a deep fear that lingers in the background. What if I don’t catch the drop in time? What if her levels crash while I’m too tired to wake up? Those thoughts never really leave me, even when I try to rest.

4:22 am Alarm - Urgent Low alarm, mom giving Maybel juice to get her glucose back up to a safe range.

Despite the overwhelming fatigue and the weight of constant vigilance, there’s no other choice. As hard as it is, this is our reality, and Maybel’s safety depends on me pushing through the exhaustion. I know that each moment I spend managing her diabetes in the dead of night is another step toward keeping her healthy, and that’s what keeps me going.

It’s a bittersweet reality. In the dark, as I watch her sleep, her tiny chest rising and falling peacefully, I’m reminded of how fragile her health is. But I’m also reminded of how resilient she is. She may be small, but she’s already dealt with so much, and I’ll continue fighting these midnight battles for her as long as I need to.

There are days when we feel like we’re barely staying afloat, but we keep going. We have no choice. If you know someone managing type 1 diabetes, please remember that it’s not something we can fix or control with lifestyle changes. It’s a lifelong, life-altering condition that demands constant attention. What we need most is understanding, patience, and kindness, because while we may seem strong, we’re exhausted beyond words.

It’s exhausting. It’s overwhelming. But it’s also the most important thing I’ll ever do. Every sleepless night, every foggy morning, every moment spent calculating insulin and carbs—it’s all worth it because she’s worth it. And that’s what keeps me going, no matter how tired I am. And while we care for Maybel through the night, we somehow always find the energy to care for Magnus too, even on the days when it feels like there’s nothing left to give.