Remembering Kycie

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Isabella and Mommy

“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 seeming 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 Greg and I had about Kycie. Her story spread so quickly that I imagined all of those with some connection had seen it. It went viral…as it should have.

But not in our house.

Because 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.

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Isabella

How can you follow a journey of a family with a story that could very easily be yours, and not feel some sense of guilt? I know, 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 that the messaging extended by Kycie’s family has made an impact.  In fact, I KNOW it has. I knew her story. Her eyes like a “Choose Your Own Adventure” filled with hope that someone would pick the right path.

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 that this isn’t fleeting.

As I looked down at 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? How can we make sure that Kycie didn’t die in vain?

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

Don’t settle for the obvious.

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Kycie Terry 10/11/09-7/11/15

Diseases like Type 1 Diabetes aren’t obvious. They 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 pretty cheap, too. Buy one. Don’t be ok with “everything’s ok”.  Trust your gut.

As I woke up that night at 2am, 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 very 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 that 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 will not be forgotten. We won’t let her be.

Cheers to changing the world,

Kristina

Comments

  1. Courtney Getty says:

    We were sitting in BE OUR GUEST restaurant and I checked my phone and I saw the news about Kycie and it literally took my breath away. Everyone has their reasons why Kycie felt like their own child. Besides the obvious T1D, Kycies DKA was the same weekend that our Bella had her first DKA ever (not even at diagnosis…. Because I followed that mommy gut and fought till someone listened!) Every picture I saw of Kycie, she was wearing Matilda Jane Clothes and our Bella is known For wearing Matilda Jane! I was unable to speak when I saw the social media posts about Kycies death. My husband knew something was wrong and just mouthed the word “what?” To me. I simply showed him my phone screen. We both sat their I. The most magical place with tears in our eyes trying to hide it from Bella. THEN…. The very next people we saw were YOU! At the merry go round. I wanted to ask if you knew but I did t want to ruin your magical experience if you didn’t know. I also didn’t want my Bella to hear. AND I was afraid if I tried to say the words out loud that I would of started to cry. So I exchanged glances with you as we waited in line and our children said hi! And I wondered, did you already know? Then I followed your posts of children’s congress and thought HOLY COW THIS FAMILY needs a vacation from their vacation. Now at 3 am when I ALWAYS get up to check my Bella I read your post. Thank you, because everything you said is things I have thought. For me it was ALL the similarities I saw in Kycie that was like my daughter. Then the post came out with pictures from her viewing. And my Bella had every single one of those Beanie Boos that was on the tables with the pictures. And the tears rolled once again. Hugs to ALL the D moms (and dads) that have shed so many tears for a child we never met, but loved because we saw our own story. I thank the Terry family who shared her with the DOC! And at my kids upcoming well visit, I am ready to quiz and question those doctors!!! For Kycie!

  2. Courtney Getty says:

    Ps….. After FFL and CHILDRENS CONGRESS you had a garage sale ?? You are crazy girl!

  3. karend1 says:

    It is overwhelming to me cannot imagine how it must be for the Terry family.

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