One Way to Help Prevent Type 1 Diabetes From Being Misdiagnosed

“I wanted to see Merida, mom.”

“Mmmm, hmmm.”

“Was that a real Buzz Lightyear, Mom?”

“Mmmm, hmmm.”

“Can we have ice cream when we get to the hotel, Mom?”

I nod. Our bus ride home from Disney seems longer than after past visits. Each question rolling off, one after another… my mind not taking in what’s being asked. Instead I’m focused on the image ingrained in my head: blonde curls, a pink smile, blue eyes gleaming.

And my eyes blink rapidly. It seems like no matter how many times they open and close, I can’t keep the flood from arriving.

“What’s wrong, Mama.”

And I can’t.

I remember that first conversation my husband, Greg, and I had about Kycie. Two weeks ago, Kycie lost her life after her type 1 diabetes was misdiagnosed as strep throat. Multiple seizures induced by high blood sugar resulted in traumatic brain injury that left 5-year-old Kycie hospitalized for several months before her untimely passing. Since then I have struggled with her story as a mother of a child with type 1 diabetes (T1D).

I couldn’t read the posts. Yes, I’d “followed” the “Kisses for Kycie” Facebook page, but I never read a single post in its entirety. Not one. I saw each and every photo and watched nearly every video. But, for many reasons, I couldn’t read the posts written by Kycie’s mom and dad… because I felt guilty.

How can you follow a journey of a family with a story that could easily be yours and not feel some sense of guilt? I know that’s not even close to the reason why Kycie’s family decided to record her journey via social media. I have no doubt the messages extended by Kycie’s family have made an impact. In fact, I know it has.

I had a garage sale today and, in the course of general conversation, mentioned to two women that one of our children has T1D. Without missing a beat, one woman said, “They should really do these blood tests on kids who come in with the flu. I heard a little girl just passed away because of a misdiagnosis.”

People are listening. They hear you. But my hope is this isn’t fleeting.

As I looked down at my daughter, Isabella, as we plodded along on the Disney bus, I wondered, “Why?”

Why was a family planning a burial for their toddler who had the same disease as our Isabella?

Why were symptoms so obvious to our pediatrician, diagnosed as strep throat by another?

What can we do about this?

As a line of tears rolled down my face, I realized the answer is simple.

Don’t settle for the obvious.

Diseases like type 1 diabetes aren’t obvious. They might disguise themselves as strep throat, the flu or, truthfully, as just plain old toddler behaviors like excessive thirst, frequent urination, lethargy and unexplained weight loss.

But you know your kid. Don’t doubt your instincts and don’t be afraid to ask for a quick blood sugar check or urinalysis. If your doctor says no, well, guess what? Your neighborhood Walgreens and CVS sell blood glucose meters, and they’re pretty cheap, too. Buy one. Don’t be OK with “everything’s OK.” Trust your gut.

As I woke up that night at 2 a.m., the sound of Isabella’s Dexcom CGM beeping to alert us to a low blood sugar, I couldn’t help but think about Kycie’s mom. I couldn’t help but think about the few nights since Isabella’s diagnosis that we haven’t had to wake up at some point to correct a high or low blood sugar, and the many mornings we wake up exhausted, REM sleep non-existent in our household.

And I feel blessed. And I feel sad.

I will see Isabella’s smile tomorrow. I will feel her little arms around my neck as she gives me a squeeze before breakfast. I will hear her laugh, cry and complain I’m pulling too hard on her hair as I brush it into a ponytail. I will argue with her about what shoes to wear and why she can’t take her nail polish to school.

But Kycie’s parents will not. Their sweet little girl’s voice is forever a memory — albeit a beautiful one — stored in their minds.

And she won’t be forgotten. We won’t let her be.

Cheers to changing the world,

Kristina

Follow this journey on Inspired By Isabella.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.