With the Dexcom Share usage sweeping the diabetes community, my adult daughter with diabetes and I decided to experiment. She – the person with diabetes- would get one and let me look in on her life with diabetes for a while. She’d see what it was like – after all these years of independence – to have someone oversee her diabetes life. I – the parent of someone with diabetes—would see – after years of trusting her and supporting her from afar – if I could handle seeing how life goes for her minute by minute. As we go along, we plan to share what we learn and our feelings from both sides here at ASweetLife. We’re only thirty six hours into it, so we have some learning to do. But I thought today I’d share my first emotion, because it surprised me. Read on, and stay tuned for more on our experiences with the Dexcom Share.
Lauren and I joked a lot about what my first reaction would be to seeing her blood sugars minute by minute. After all, she’s twenty three, independent, smart and on top of it. It’s been a long time since I’ve even known two of her blood sugar readings on any given day.
She guessed that within twenty minutes I’d be stressed out and frustrated. I guessed that I’d be champing at the bit to call her and yell “CORRECT!” We both figured it was going to be eye opening on both sides.
So here I am, twenty six hours into seeing my daughter’s constant blood sugars in real time with Dexcom Share. And I know what my first emotion is.
I’m really, terribly sad. And that takes me totally by surprise.
Let me explain. It’s been nearly eighteen years since Lauren was that tiny girl newly diagnosed with Type 1 Diabetes. It’s been almost two decades of living with the thick layer diabetes sets down over everything. And I want to say: we are all okay. I’m one of those positive moms.
Even though diabetes has always been a pain, a distraction, an expense both financially and emotionally, I long ago decided that was never going to rob Lauren – or any of us – of joy. So I raised her very much in the “suck it up buttercup” mode. Deal with it, live with it, and get on with life even with it there. And she has. I’m proud of her life in Washington DC, five hundred miles away from me. She works hard all day at her job and has fun with her many friends in her off hours. She is living well and with joy.
Raising her that way and accepting it allowed me, however, to live a little bit in denial. Her A1c’s are okay, so life is okay. She looks and is healthy, so it is what it is.
And then I tapped the screen and started the Share. At first it was a kick. 111 was the very first number that showed on my screen. How even of it! I thought. Secretly, I was kind of excited to see things fluctuate on the screen. I mean: this is cool. She’s in DC. I’m up in Vermont skiing. And I can see what’s going on up here. Then things started along. Lauren was at work, on what I knew was a very busy day. And diabetes was at work, too.
Because here is what I forgot (well, rather: what I’d pushed way back in the recesses of my mind): diabetes never rests. There is no “remission.” It’s never “stable.” Inside my daughter’s body is a constant war between manufactured insulin, carbs, stress, activity, inactivity, and more. Every single moment of every single day, diabetes messes with her.
I forgot that.
And now, the Share was reminding me. I watched her climb quite high in the morning (“I’m the queen of dawn phenom, mom!” she reminded me. And since she is on a pump break, she has to live with it a bit). “It’s not like I spike to five hundred,” my “suck it up buttercup” kid told me. Then she started to plunge down. Really low, a half-hour before a scheduled lunch meeting with her boss. “It’s so frustrating,” she messaged me. “Why can’t lows wait until right at lunch time? It’s such a waste of calories!” I also knew, while that low was probably rocking her body and mind, she was focusing on some huge work projects. A while later, she was shooting up. Did she forget to bolus for lunch? I wondered (but did not ask. I want to be right about me not freaking out even if I have to freak out silently to be right.) “That’s a rebound from a low, Mom.” She messaged me, as if reading my mind. “And Mom? I feel fine.”
Sigh. “I feel fine.” She feels fine because this is all her body has known for nearly two decades. She feels fine because I raised her to suck it up and do her best even with diabetes on board. She feels fine because what other flipping choice does she have?
My husband, who was on vacation skiing with me and also linked in, held up his screen at one point and said “This makes me just feel so bad for her.” I get it.
So here I sit, 26 hours into this, a mom who has been pretty victorious in her job of raising a child with a chronic incurable disease; a mom who is always, always telling parents of little ones diagnosed that “It’s going to be okay. You’ll find your new normal!” I wasn’t lying: you really do.
But I’m sad today because I remember, fully, what a horrid thing Type 1 diabetes is for a person to endure. I’m sad because I realize my rock star kid has been enduring this with a smile on her face for nearly her entire life. I’m sad because while the Share is an amazing advancement, for now it means we can really only see it all more, not fix it all easier.
My daughter is fine today. She just messaged me to look at her overnight after sharing with me how she handled a happy hour (she’s brilliant. It’s perfect!) She’s at work again, digging into important projects. Her blood sugars are still showing in front of me, and she has a mom who has not freaked out.
My goal for today is to continue watching and try to suck it up, buttercup. Because this is what it is.
And it is what was given to us for now. I must share something else with my child now that I’m in on the secret of what goes on in her body every moment: Courage
She’s smart and happy and successful and healthy, despite that war inside her. And while she cannot stop that fury of blood sugar madness much, I can work on my sadness.
Just like those readings. One minute at a time.