I’ve been selfish lately, and I’m feeling guilty about it.
About a month ago, we dove into the deep end, entering the world of continuous glucose monitoring. It took some time to shuffle paperwork and process the order, but everything was approved and we started live about three weeks ago.
I fell in love with Dexcom right away. The sensor was easy to insert, and after a few glitchy hours, the data began to pour in. It was astonishing to see Maddy’s glucose levels play out on a screen. How they ebbed and flowed based on the time of the day, the kinds of foods she was eating, and her activity level. Dexcom revealed information that stays underground during a typical day of D-management; unless you want to be testing BG every hour or so, the data remains somewhat unknown. But with Dex, seeing the trends pop up, being able to take proactive measures to stave off a low or tamp down a high… it was just, WOW.
How this all came to pass, though, was born of my selfishness, and now, the source of my guilt. You see, Maddy did not want to get the Dexcom. Because of a history of dangerous lows needing glucagon injection, plus ongoing hypoglycemic unawareness, Maddy’s CDE has been nudging her toward CGM land for many months. I’ve been doing my own research on the real-life value of CGM in reading about others’ been-there-done-that experiences with Dexcom (you know, that stuff that’s not medical advice, but that’s sooooo much more valuable than medical advice). As we made many sales pitches, Maddy protested against the demand of wearing yet another device, dealing with insertion pain, site failures, funny looks, adhesive rashes…. In the end, though, we did not prioritize her preferences, and I convinced myself that we really needed this technology to better manage T1D. I took the choice away from her, and made it my own.
Maddy tolerated Dex for just over two weeks. She started to see that we were testing a little less often and that we could make decisions that kept her feeling reasonably well in situations that historically have caused big problems. She liked Share too, since having it online meant that Mommy wasn’t texting her “like, every 5 minutes” to remind her to test, bolus, and check in. And yet… we had significant problems with adhesion that required layers on layers of various medical and athletic tapes to keep the sensor in place. She didn’t like the low alarms waking her up at night, and she was frustrated by technical problems with Share (the result of shitty wi-fi up here in the sticks). The other day, her site bit the dust in the shower, and we couldn’t save it with a new tape job before it just completely fell out. Underneath, an angry rash revealed itself, and she asked if we could take a break for a day. That break has not yet ended.
What I am learning is this: although Maddy is nearly 11 (read: still a child), the T1D is hers. Here I am all squawky about how the Dex will help you! It will allow you to have more independence!, completely ignoring the truth: that I’m not the one with diabetes. That this device is not connected to my body. That I don’t know how it feels to be tethered to medical machinery 24/7, 365.
I don’t want it, Mom. It’s my body. It’s my diabetes. I get to decide this time. We don’t need the Dexcom. Maybe I will want to use it someday. But not now.
I think she’s right. I wanted to use CGM more for me. As she gets older, I’m trying to respect her preferences in the process of sharing D-management responsibility with her. Some things are not negotiable, but some things really are. It’s important to me that she have as much control over what happens to and within her body, given how much control T1D and puberty have taken from her without her consent. I’m hoping her CDE will reach the same understanding.