After more than six years as the mom of a child with type 1 diabetes, there isn’t much I’m still perplexed by when it comes to his disease. I mean, don’t get me wrong: It’s unpredictable, uncontrollable, and some days are just downright frustrating. But in general, I’m not at a total loss for what to do in those moments — those days when my son’s diabetes seems to have a mind of its own.
I am not running to my fellow diabetes-mom friends asking for advice, calling the endocrinologist, or desperately searching the internet for tips on how to bring my son Miles’ blood sugar back into range. I generally know how to troubleshoot high blood sugars, device issues, insurance discrepancies, and doctor appointment scheduling. And regardless of what happens as a result of (or in spite of) my actions, I know I did my best.
In other words, I got this!
But there is one thing that I admit I have not figured out, even after all this time. It’s the one thing that stops me in my tracks, renders me speechless, and comes back into my mind over and over again. For days or even weeks later, I question how I handled the situation, rethink my actions, and wish I could go back in time and do it all over.
When small talk leads to diabetes (as it so often does, intruding upon our otherwise normal mom-and-kid existence), sympathetic acquaintances with good intentions know not what to say. And I, ever the people pleaser, know not how to answer.
Someone utters three simple, curious words: “How’s he doing?”
It happens on the playground. It happens at the soccer game. It happens at the birthday party or the fundraiser. And when it happens, it’s like he was diagnosed yesterday.
For one thing, how Miles is doing varies from one day to the next. Or even one hour to the next. Does this person want to know his blood sugar right now, as his dad and school nurse and I seem to be all-too-interested-in at any given moment?
Do they want to know how his overall health is? His A1C or his time in range, based on his most recent endo appointment? His eyesight and skin health and other areas prone to complications? His diet and how well he is hydrating?
No. Not likely.
Are they wondering how he’s doing in school, despite the constant interruptions and cognitive impact of high and low blood sugar events? Do they want to know if he’s handling being different from his middle school friends, wearing not one but two diabetes devices on his body and hearing alarms all day long?
Because I’m not sure. I think he is doing okay. But I may never really know the truth. After all, he is 12, and not exactly an open book when it comes to talking about his feelings.
And what about me? Does anyone want to know how I’m doing? The exhausted mom who was up every hour last night when low blood sugars just wouldn’t cooperate? The employee who excused herself from an important meeting because her son called to ask how he should bolus for the surprise smoothies being served at school today? Anyone want to hear about my fear of extreme lows, my anxiety around letting him sleep at a friend’s house, or my panic when I realize he’s running around the neighborhood without a juice box? How about the way my career is driven by the need for exceptional health insurance or how I feel like I’m constantly failing my other two children who don’t demand 24/7 care for a chronic illness?
Too much for small talk at the soccer game? Probably.
So how do I respond? I don’t say very much. Maybe something like, “He’s doing okay. Some days are better than others.” And then I change the subject.
If I were to be honest, I’d share it all, and I’d probably have a good cry right there on the sidelines. But the truth is, those who ask this question probably aren’t looking for an answer at all. What they probably mean to say is, “I hope you’re all doing as well as you can be.”
They don’t know what an A1C is, or what it’s like to fear closing your eyes at night, or why you can’t let the phone go to voicemail during an important meeting. They don’t know, and that’s okay. What they do know is that my child has diabetes, and that makes life more challenging for us both.
And somehow, that’s enough.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.