As a mom of a child with type 1 diabetes, I have made a point to try and educate myself about the ins and outs of the disease. I’ve read books, talked with experts, and attended seminars, and I consult regularly with James’ pediatric endocrinologist. As a result, I’m pretty much the expert on my child. And yet, I often talk with people who think they know more than I do.
Most of these people are very well-meaning. From the stranger who has a grandparent with type 2 diabetes, to the health teacher who studied it briefly in college, to even a pediatric nurse who doesn’t specialize in the disease, I encounter people who would like to correct me in my knowledge of how to deal with James’ chronic illness. I actually invest a fair amount of attention, when I can spare it, into trying to educate the people around me about the realities of the disease and why we do things a certain way. It’s my advocacy work, in a way.
But it’s tiring, and I don’t always have the bandwidth to do it. And sometimes it becomes quite problematic, because these non-experts won’t relent. Which then requires me to say something along the lines of, “Thank you for your advice, but I’m his mom, and this is the way we’re going to do it.”
And then sometimes in my life, I realize that I’m that non-expert busybody who thinks she can run other people’s lives better than they can.
I’ve gotten good at not doing this with other families with type 1 diabetes. I had strong opinions in the beginning about the right and wrong way to do everything from feeding our kids with type 1 to choosing insulin regimens and school care plans. I know better now than to intervene. I’ve seen too many parents do things in ways that, while different from what I’d do, nonetheless work for their kids. So I no longer have any inkling that I can somehow do a better job than these families.
But can that appreciation and trust in others extend to parents of kids with other challenges? I know it can, but I found myself guilty of second-guessing another parent recently… until I realized exactly what I was doing. This child has a completely different condition, and he has his own personality and a temperament unlike any of my kids. I found myself pushing back about something the mom was trying to communicate to me. It had to do with logistics and convenience and my smug attitude that the other parent wasn’t being reasonable and I had a better plan. Until I had to stop myself and realize that I was being that jerk that I hate dealing with. I stopped what I was doing, put my arms around my friend’s shoulder, and told her, “You tell me what would work best for your child. I know you’re the expert, and I’ll do what I can to help you.”
Everything changed right then. I think one of the most powerful moments in human interaction is when a person realizes that they are really and truly being listened to. I know I appreciate it. (I had this experience with James’ school health tech so many years ago.) Right then and there I went from being one more burden in the life of a person with a chronic illness to being more of a blessing, and it was such an easy thing.
I don’t know that I would have really understood the power of trusting another person if I hadn’t personally experienced it because of James’ diabetes. Part of staying positive about living with a chronic disease is looking closely for hidden blessings, and I believe I’ve found yet another one: Living with a child who has type 1 diabetes has taught me the power of really listening to other parents and taking them at their words. Having been the recipient of both bad and good listening, I know what kind of friend I want to have and what kind of friend I want to be.
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. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.