One of the challenges of parenting a very young child with type 1 diabetes is the interactions with immediate family and other parents.
Our five year old son Sacha has had T1D now for three and a half years, and sadly, only one of our friends has ever tried to learn how to test our son’s blood sugar. This probably says a lot about us and the quality of our relationships, but I still find that statistic unsettling.
To be sure, other adults in our lives do know how to take care of Sacha, but for the most part, they are people we pay. Our babysitter, K, who is terrific; a back-up sitter here in Minneapolis that we’ve trained; and Sacha’s teachers at his Montessori school. If my wife and I were to get injured in a car crash, only a handful of people would know how to care for him. The Medical Alert card he carries in his pump pouch is a nice backup, but doesn’t really solve the problem. His nine year old sister, Tessa, has excellent instincts, but she’s still far too young to provide real support.
Our families are supportive, but they live far away.
When my son was diagnosed we lived in Ottawa, and had a good group of friends living nearby. Our kids often played together, and we felt that we had a close community of coworkers and friends. Still, only one of them ever offered to test Sacha’s blood, and none of them learned about injections, dosing, carb counting and the like. The same is true now in Minneapolis, although to be fair, we’ve only been here for a few months.
What this means in practice is that Sacha can’t have a playdate or birthday party at anyone else’s house unless one of us is there. Sleepovers are out of the question. And when other kids come over to play, their parents never really understand how closely we have to watch him. Of course, my wife and I rarely take a night off, and we can’t drop off our kids with friends or relatives.
The point was driven home to me a few days ago, when friends dropped their kids over at our house for a playdate. We’d asked for a specific time frame, so that we could get Sacha his dinner on time, but life intervened, and they couldn’t stick to the schedule. They realized Sacha had T1D, but hadn’t realized what this meant in practice. As my friend later said, “Sacha looks so normal and healthy, it’s hard to remember what you guys are dealing with.”
This, then, is the problem. In the developed world, where medicines and advanced diagnostics are plentiful, very young T1D kids like Sacha can, thankfully, lead an almost normal life, albeit with a lot of adult care and supervision. In the poorest parts of the world, many of his peers would have died or might suffer from stunted growth or other outwardly visible signs of illness. Many, moreover, would be on lower doses of premixed insulin that would keep them alive, but also run their blood sugars so high as to almost guarantee life-ending complications.
But even with ready access to insulin pumps, blood glucose test strips, the latest in analogue insulins, and (soon!) a continuous glucose monitor, Sacha will always be living on the edge. He will always be at risk of plunging into a life threatening hypo after a short burst of activity, and we are always at risk of miscounting carbs, misjudging insulin doses, or otherwise endangering his well being. And if he were to get lost or somehow be separated from K., his mother, or I, he’d not know how to care for himself. The police or ambulance team would have to somehow figure out that he was Type 1, and then locate a medical professional who could help. In the meantime, Sacha could easily go hypo or hyper.
These short term dangers may even be higher in wealthier contexts, where we can afford to to keep T1D children under much tighter glycemic control. Although this is much better for them over the long term, it increases the everyday, short-term risk of hypos.
Most people cannot comprehend what it takes to keep a child with diabetes safe in the short term, and under tight glycemic control over the long term. They can’t understand the implications of constant testing, constant vigilance, constant fear. How can they?
When Sacha was diagnosed, friends told me, “don’t worry. It’s no big deal. He’ll limit his sugar intake, and take a pill.” They were thinking of Type 2, of course, and like me, had no idea what Type 1 entailed, especially in little kids.
Now, almost four years later, I’m still not convinced that the friends we are closest to really understand the challenges.