I was right. His blood glucose when he was admitted was over 34 mmol/L (612 mg/dL). His breathing was laboured because he was in DKA (Diabetic Ketoacidosis). Without insulin, his body couldn’t use the sugar in the foods he was eating, so instead it was burning protein and fat for fuel. The toxic by-product was ketones. That was the fruity smell on his breath.

We spent the next few days at the hospital with him. While the doctors and nurses were giving him life-saving treatment and helping his body recover, my husband and I spent time with the nurses and dieticians from the Diabetes and Endocrine Clinic, learning all the ways our life as a family was about to change. At the time, all I could see was “change for the worse”.

I spent the next two years in a fog. When Max was diagnosed, I was one month pregnant with our daughter, Gemma, and caring for my dad, who was terminally ill with cancer. So the next few years became about survival: caring for a newborn, catching sleep whenever I could, and learning how to care for a child with diabetes… checking blood sugar, carb-counting, looking for patterns of high or low blood sugar, changing the insulin doses to try to even out these swings, dealing with blood sugars that not infrequently rose to 18, 22 or higher, feeding him sugar water through a syringe when his blood sugar was low and he refused to take the low treatment. I remember we used his empty baby food jars to pre-mix the right amount of sugar water, and left them in a row on the inside of the fridge door.

I simply went through the motions and did what needed to be done to keep our son as healthy as possible. When I look back now I realize that for those first few years, we were simply in survival mode; I was overwhelmed and tired; it was hard to think about all the “extras” that could be done, that “should” be done. I didn’t even try to come up for air.

So months passed. Other than brief bouts of grieving, we put our feelings aside and focused on learning the mechanics of our new life, our radically new way of thinking and being. There was little time to process how I felt about all this. I accepted as reality that the diabetes dragon had moved in with us, but I didn’t have time to think about it or to grieve what we had lost, and I certainly didn’t have time to learn anything from it. I had bouts of tears and anger, like when I had two hungry and crying kids hanging on my legs but couldn’t feed them until I finished counting carbs and injecting insulin. I would think, “Why us? So-and-so doesn’t have to do all this, they can just feed their kids when they’re hungry. It’s not fair. Life sucks.” Maybe you have had moments like this, when diabetes is beating you up, and you can’t see an end in sight. This state has been referred to as “Diabetes Distress”, or “Diabetes Overwhelmus”, or in the extreme, Diabetes Depression. (I don’t want to bring you down… hang in there with this story, things got better!) But for us, things got worse before they got better.