Overall, I think I have a mostly healthy and positive attitude about life with type 1 diabetes (T1D). It took a long time for me to feel that way. When we first started seeing the symptoms of T1D, I buried my head in the sand and convinced myself that it wasn’t happening to my daughter. When she was admitted to the hospital and we began to appreciate the totality of T1D, I mourned for the life I expected my daughter to have.
Ther first school year after diagnosis, her school nurse was also a T1D Mom and was a source of learning and comfort for me. I remember asking her once if it would ever get easier. She paused for a moment before responding:
“It doesn’t get easier, you just get more used to it.”
It took a long time for us to find our groove with life after her diagnosis, but we’ve found it. At the moment, we’ve found the trifecta of things that help us to manage her blood sugar levels pretty well. She wears a Dexcom G6 continuous glucose monitor, an Omnipod insulin pump and she is using Fiasp (off-label since it isn’t approved for use in pediatrics or in pumps).
I really can’t complain. Her highest A1C since diagnosis was a 6.7 and that was when we switched from MDI (multiple daily injections) to her first insulin pump. For the most part, her A1C stays between 6.0-6.3 with 4% or less of her time below 70.
I could probably make her A1C lower, but it would require a lot more headspace and energy than I am willing to give diabetes right now, and if I’m being honest, it already takes a lot of my mental and emotional energy.
We also work to try to find a good balance in her life. For a soon to be 13 year old, she’s very involved in her own care. While my Instagram account sometimes makes it look like I dictate every move she makes, she actually has quite a bit of freedom in her management. There are certain things I prefer to work with her on (like bolusing meals), but she does a lot of things pretty independently.
She goes to sleep overs, has no restrictions on foods and often eats without me knowing. I’ve always emphasized that I don’t care what she eats, so long as she takes insulin. I do what I can to keep her blood sugar between 70-140. I don’t expect perfection, I know that there are times she’s going to be out of range. Sometimes, when we need a break, I step back and we make a deal. If she can keep her blood sugar between say 80-180, I leave her alone entirely.
For the most part, it’s really worked for us.
But like a lot of kids, she gets really sick of living with diabetes. It is relentless and exhausting. And some kids in her school are real a-holes and bring diabetes into their toxicity. She just wants to be “normal” (I haven’t figured out how to make her understand “normal” doesn’t really exist).
For the past few weeks, I could tell she needed a little more space than I normally give her. So I tried to step back a bit. And her blood sugars have definitely reflected that. She’s been a bit higher than normal, but I needed to let it go.
I told her recently that we needed to start to work together to dial it back in. We have an Endo appointment next month and I’m not willing to let her A1C skyrocket. If it goes up a little, so be it. To me, there is more to life than just her A1C. I know we will still be well below the target her Endo has set for her.
I’m not going to share the dirty details, but just know that we’ve been struggling to work together. We’ve had some tough love conversations, but it came to a head last night. She did something that was not only a safety/health risk, but was also on the heels of me asking her to do something that she ignored.
In my frustration, I snapped.
I am exhausted from the work I do to manage her diabetes. My sleep pattern has become so poor it is likely contributing to health issues I have.I really try to find the right balance between managing her diabetes and letting her be a kid, but what happened yesterday was a slap in my face. Unfortunately it wasn’t just that incident, it was just the straw that broke the camel’s back.
Most nights when I am up with her overnight, I manage things while she sleeps. She can drink juice boxes or eat snacks while she sleeps and I can do corrections or basal adjustments without her knowing. Last night, I woke her up.
Because of the totality of what’s been going on recently (not all of which is diabetes related), my trust and confidence is gone. There is no current conversation of “how to balance letting her feel as ‘normal’ as possible with managing her BG levels”. Right now I am focused on figuring out what her insulin needs are so we can try to right the ship before we head into our next doctor appointment.
She’s got to do some work to regain my trust because right now, it is shot.
Diabetes really freaking sucks. Like a lot. (The Jersey girl in me wanted those sentences to have a lot more f-bombs in them than they did.)
I hate that it sometimes impacts my interactions with my kid. I hate that she gets mad at me because of stuff related to diabetes. I hate that she sometimes thinks I’m mad at her when I’m really annoyed with myself or at diabetes. I hate pretty much every single thing about it.
My challenge right now is figuring out how to quickly help her to rebuild my trust so that we can start to think about balance again.