I met a woman the other day who was an occasional substitute nurse at the middle school. While this was the first time we'd met, she knew my daughter well. There are others like her.
I have sent my child to school, on field trips, to birthday parties, to marching band camp and more. The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.
I wonder if the people in whose hands I've left her fully understand how I feel about them.
These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.
If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.
Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.
Last week, diabetes had the upper hand. It issued a series of decrees.
*Alarms will sound nightly from midnight until four a.m.
*You will wake a sleeping teenager for Cookie Monster Juice at least twice per night.
*Delirium will lead you to wonder if the nightly need for multiple juice boxes has something to do with the Cookie Monster themed branding. As in, 'Me Want More JUICEEE.'
*You will wake each morning to say, or to hear your child say, "Uck- juice box breath again. This is so gross."
*You will become so exhausted by overnight low blood sugars that you will increasingly limit dinner and bedtime boluses until the alarms turn from low to high, though still reliably from 12-4.
*You will try multiple tactics to stabilize overnight numbers and each will backfire more mysteriously than the next.
Diabetes, I have news for you. You don't get to win.
We issued only the only decree we need:
*We will not give up.
With perseverance and patience the trend is abating as mysteriously as it appeared. Maybe we finally made the right basal adjustments. Maybe we fixed the bolus dosing for the evening hours.
Or maybe it's all because we switched back to Juicy Juice boxes.
I thought armchair medical quarterbacking might be a unique diabetes phenomenon. People who live with diabetes often hear these kinds of things:
That new pump with automatic shut-off sounds like something everyone should have- when are you getting one?
I can't believe you let her go to the carnival without an adult- that seems so risky.
My coworker with diabetes completely eliminated carbs and she's doing great! You should try that.
My nephew never had a 504 plan and he graduated high school with straight A's and a 1300 on his SAT's. Why would you have one for your daughter?
I happen to be spending time with a few different people these days who have medical conditions other than diabetes. I'm learning that we diabetes people are not alone. The free dispensing of unsolicited advice crosses many disease platforms. I've heard 'suggestions' like:
I never went to a doctor for my rotator cuff issue- my chiropractor is amazing. Alternative medicine is the only way to go.
My cousin had that kind of cancer and never considered new or experimental treatments. It seems really risky.
Dad wouldn't have put up with the pain long enough to try physical therapy and pain management for his back issue. He went straight for surgery. I can't believe you're going through all of that.
There's a catch-phrase in the diabetes community: Your Diabetes May Vary (YDMV). In many ways it applies to other physical conditions too. There are so many reasons (more than this short list) that different treatments and lifestyles work better for different people with the same diagnosis:
-First of all, the diagnosis might not be quite the same at all...type 1 vs. type 2, different kinds of back injuries, different kinds and stages of cancer.
-A condition can physiologically manifest itself differently in a different body.
-Insurance coverage and ability to pay can influence medical choices.
-Education and prior life experiences influence decisions people make about treatment.
-Quality of life has a different meaning for everyone, leading to different tactics for managing a health condition while living a full life.
I think it's okay, if not downright helpful, to talk to each other about the different ways we manage diseases. We can certainly learn from one another, and it's often useful to hear and to try new ideas. What's not helpful is insert assumptions or judgements into the conversation. It's important to respect and support the decisions people make, even if they're different than yours. What works for one may not work for another.
At least, diabetes friends, we're not alone. It turns out that Your Disease, Discomfort, Distress, or Dietary Restriction May (Also) Vary. And that people have opinions about all of them.