Our Impossible Diagnosis

WRITTEN BY: Melody Larson

“We’ve never seen this before. We don’t know what’s going on.”

Normally, words like this from a doctor would be terrifying. But when I heard them not once, but twice, during our most recent hospital stay with Aria, they were reassuring.

For the last three years, we’ve been waiting for it to get easier. For that switch to flip so her blood sugars make sense … at least most of the time. But in three years we’ve never even had a “high” setting on her Dexcom. Her range is the whole chart. She’s been admitted to the hospital seven times since diagnosis for a varying array diabetic-related illnesses. The word “management” holds as much meaning as a sieve holds water. 

They told us it would get easier after her honeymoon ended.

Then they told us it would get easier as she got older, as her body grew and was better able to handle insulin.

Then they told us an insulin pump would solve all our problems. Varied basal rates! Tiny doses! Accuracy!

Nothing really helped.

The doctors see diabetes treatment as a math problem; this plus this equals that, always. If all the numbers start off correct, the results should be predictable. There is always an answer. And for most people, that’s true. Our doctors have helped us try many things along the way. They always have a new plan, a different strategy, hoping this time we’ll figure Aria out.

But I have learned that diabetes treatment is more like a watercolor painting. It requires different layers, shadows, highlights, just the right shade … It’s something we feel our way through and take moment by moment. It means different basals and ratios from one day to the next, uncovered carbs sometimes, never going over a certain amount for a bolus because I know it will crash her, vastly different correction ratios for “with food” or “without food.”

Our doctor decided it was time to give our challenges a title: “Brittle Diabetes.” The term Brittle is part diagnosis, part band-aid. Having the title doesn’t fix anything. But it does give a nice answer to all of Aria’s diabetic oddities. It means Aria’s body officially does things that don’t make sense in the endocrine world. That despite careful management, she doesn’t follow the rules. She is very sensitive to carbs and insulin. Huge spikes and drops are expected. Her range is the whole chart and she’s “ketone-prone.” All of this is stuff I’ve said for years. It’s not new to us, but it just went from the mail room to a corner office with a name plate and a 401K.

The doctors finally understand. We can now say in one word the challenges we experience every day. For Aria, a Brittle diagnosis allows freedom. For us, her parents and stand-in pancreas, it brings chains. We’re no longer waiting for a switch to flip. That switch doesn’t exist at all. This is never going to get easier, it’s just our life, and one day it will be Aria’s. It makes me ache to think how hard it will be for her to manage. I know all too well; I’m exhausted from fighting and losing this battle. It takes the math and structure and rules to figure this out, but it takes color and water and texture and making something beautiful out of a mess and to keep it going day in and day out. She needs both.

The days are long and messy and stressful. But maybe one day, when Aria’s older and ready to take on more of her own care, maybe then we’ll both stand back and realize all the mess we’ve been making is actually a beautiful painting. That it’s good and it’s lovely, and it’s her life. I hope I help her build something she can take with her; I hope she learns that even though management for her is a little more challenging, she can have a full life and make something amazing out of it.

Learn more about Brittle Diabetes.

Melody Larson

Melody is a graphic designer and mom of two living in Jacksonville, Florida. She became a human pancreas in 2014 when her daughter, Aria, was diagnosed at the tender age of 14 months while her daddy was deployed. When not fully immersed in pancreas duties, she enjoys Netflix, comfy pants and wine.