Learn As We Go.
During the discussion at Friends For Life about being a parent with type 1 diabetes, the topic of "telling" came up over and over again. And not "telling" as in "I'm telling on you, Panc, for being a lazy slab of cellular mass," but more how to tell my daughter about diabetes.
The people in the session had varying opinions, ranging from having a sit-down discussion about what the impact of diabetes may or may not be to introducing diabetes on a bit-by-bit basis, and all the gray area in between.
I definitely fall into that second camp, as a parent. My daughter is two years old. (Technically, twenty-seven months old, thank you very much.) I don't want to have a formal sit-down chat with her about her mommy's diabetes, because a. it won't matter a lick to her unless it involves Thomas or watering the flowers outside and b. she has absolutely no concept of what "chronic illness" means. She's two.
However, like most kids, she's perceptive. She's been watching me test my blood sugar since she was able to hold her head up, and she has a sense of what it means to "check my finger" because she's also had her blood sugar checked a handful of times. She knows it's not a fun moment. ("That's mama's meh-cine. Not mines. You keep it.")
Lately, she's been asking to see the numbers as they count down. "Five, mama! Four! Three! Two! One!" And when the blood sugar number pops up, she reads that back to me. "Two eight, mama!" At which point I correct her: "No, you're reading it backwards. Eight two. Eighty-two." "Eighty-two! That's nice." (Every number is "that's nice." 212 mg/dL? "That's nice." 182? 103? Eleven million and seven? "That's nice." I like that she thinks they're all nice. Makes me less insane about them.)
"Twelve! You has a twelve, mama!! That's nice." She looks at my meter and announces the result proudly.
She is learning about how the Dexcom receiver and the sensor on my thigh work together, especially now that it's summer and my sensor sometimes peeks out from underneath my shorts or dresses. "That's Dexcom." She picks up the Dexcom receiver. "That's Dexcom, too. Two Dexcoms!" Pause. "Ah, ah, ah!!" (We watch a fair amount of Sesame Street, and The Count is a fan favorite.) But last week, when the Dexcom alarmed for a blood sugar over 160 mg/dL, she grabbed the receiver off the kitchen table and said, "Mama, time for check your meh-cine!" The BEEEEEP!s now mean something to her.
"Diabeeeeeeeetes." She knows the word. She knows that all of my medicine bits (the pump, the infusion set, the Dexcom, the sensor, the glucose meter, the glucose tabs ... all the "stuff") are related to this thing we keep calling "diabetes." She has no idea what it really means (pancreas kaput, etc.), but she is beginning to understand that it makes me do things differently than some of the other mommies.
My little Bird will make sense of my diabetes breadcrumb by breadcrumb, learning from the information I share with her. Eventually, as she grows older, we'll gently teach her what to do if Mommy needs help. She'll understand that I wear certain devices and take medicine before I eat and I sometimes wait a few extra minutes before we play outside, waiting for my blood sugar to come up. She'll know what she needs to know, but I don't want her to know any more than she needs to know. The parts of diabetes that scare me will be shielded from her for as long as I can, because there's no reason to make her worry.
My job is to love her. To play with her. For my husband and I to raise her as best we can, so that she becomes the best she can. My diabetes may impact certain moments, but it doesn't change the course of she is. Or who she will become.