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It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Bionic: The Pick Up

We made the final turn, approaching Clara Barton Camp to pick up our girls, and it felt like we were moving in slow motion. As we moved past the back of their cabin to the parking lot, we were giddy with excitement. Misty and I couldn’t seem to stop the car fast enough! We hopped out and headed straight for their door…wondering along the way if we were supposed to check in somewhere beforehand, but knowing we were on a mission to get our arms around them first and foremost.

We stood at the door for a second.

They were there, smiling with their friends – oblivious to our arrival. I whispered her name at first…then a little louder…

She looked up, met my gaze, and rushed into my arms.

We cried a little. She hugged me tighter than she has in years … and then she told me she didn’t want to go home. She told me she didn’t want to take off her “BioPanky”. She asked if we had to go right away, or if she had some time.

I explained that we had all day. It was just after 10 am and the study didn’t end until 3. With that, she took a breath and then started to pull out all her parts and pieces. “Mom, I can’t wait to show you everything. This is the brain, and this is the insulin.” She was ripping the zippers open and pulling out pumps and tubing like rabbits out of a hat.

She was a very happy camper.

A very happy, grubby camper.

bionic addy (1)

The most glorious, happy, grubby camper I had ever seen.

“I chose Seahawk colors, Mom. Of course, you knew I would, right? Daddy would be so excited about that.”

–Beep Beep–

“Are you beeping, Honey? Do we need to call someone? Should I go get one of the nurses? What do you do when it beeps…”

“Mom.” She grabbed my arm. “Relax. It beeps all the time. I just ignore it. It’s doing what it’s supposed to be doing, so I don’t worry about it.”

Those words have lingered in my mind: “It’s doing what it’s supposed to be doing, so I don’t worry about it.”

The Bionic Pancreas had kept my daughter alive – and thriving – for five days and five nights. It was doing what it was supposed to be doing, and she wasn’t worried about her diabetes.

I don’t know if there has ever been a day in the past nine years that she could say she wasn’t worried about it — or, maybe not “worried” per se — but at least not THINKING about it.

Ignoring it.

Living life apart from it.

And, yet, there she was. Standing right before me, beeping without a care in the world about what her number was.

Her bunk was a mess, so we cleaned up that disaster. I made her change her shirt and brush her hair.

bionic belt (1)

(Once a mother, always I mother, I guess.)

Then it was time for a BG check and lunch.

bionicaction

She didn’t have to count exact carbs, but she did have to tell the device if she wanted a “smaller than usual”, “usual”, or “larger than usual” meal. Those definitions are individualized, and based on predetermined carb ranges the user enters into the device while setting it up. For Sugar, a “larger than usual meal” meant 80-100 carbs.

Off to the dining hall for lunch — she didn’t finish her cookie, but wanted a few more nachos, and then she wasn’t sure about this or that. Honestly, I have no idea how many carbs she actually ate between her excitement and coordinating with Ally to show us some of their camp songs/cheers. She just sat down, clapped her hands, beat the table, and ate a few bites of lunch in between. If she wanted more, she got more. When she was finished with something, she was finished. Neither of us were keeping a carb tally. It all seemed so…

Normal.

After lunch, most of the girls who weren’t in the study were gone. Sugar was trying to catch the few who were left to say good-bye and hug as many friends as she could, before eventually finding her way to the GaGa Pit

bionic gaga

Addy, Ally, and Elise…the final three girls left in the game!

I don’t even know how many games of this GaGa thing she played, but she loved it — as did all the other campers!!! Apparently GaGa is a popular game…who knew?!?!

What I do know, however, is that she played GaGa over and over and over — for about an hour and a half — without ever stopping to think about what her blood sugar was doing.  *AND* she did it after telling a device to give insulin for a “larger than usual” meal, then eating very randomly without really knowing for sure what her carb intake had been. She could have eaten too many or too few carbs, but it didn’t really matter, because the device was plugging along, doing its job…making a decision to give a little insulin, or a little glucagon, or do nothing…every 5 minutes without needing her to interrupt the game to make those decisions herself.

She just played.

And I just watched.

It was the first time since before her 2nd birthday that I witnessed my daughter simply being a healthy, happy child…running and playing carefree…without the burden of diabetes. I tried as hard as I could to savor those moments, because I knew they would be coming to an end. I studied every detail, and breathed in the sense of normalcy that accompanied each passing second. I committed everything to memory…her face was more relaxed; her movement was carefree; her smile brighter. She was experiencing life apart from the numbers — whatever they were — because she didn’t know, nor did she care.

I couldn’t get enough of watching her laughing and smiling and having fun. Nor could I seem to get enough of watching her do those things without the familiar worry in the back of my mind…replaying her previous carb counts and insulin dose/time while wondering if she should stop to check or find a snack.

She was, indeed, BIONIC.

{Stay tuned for the next part of her story. The study officially ends, she removes her “BioPanky”, and we have a chance to sit down with Ed Damiano to review some of her preliminary data.}

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:
Category: bionic pancreas
  • kelly says:

    AMAZING!! This all makes me so emotional!

    August 7, 2014 at 9:52 am
  • Emily B says:

    WOW :tears:

    August 7, 2014 at 10:05 am
  • Katy says:

    So so so cool.

    August 7, 2014 at 10:41 am
  • Jennifer says:

    I just cried!. Thank you for sharing, maybe someday all of our kids can be “bionic”.

    August 7, 2014 at 12:00 pm
  • Misty says:

    “She just played.” Wow. Those three words really say it all. Tears. I wanna go back!!

    August 7, 2014 at 12:32 pm
  • Amanda says:

    Been catching up on your posts this afternoon, I did not cry until I read….

    “It’s doing what it’s supposed to be doing, so I don’t worry about it.”

    Geez! How awesome, and how did you sit and watch and not count carbs or worry about checking BG’s, you just trusted….amazing my friend, simply amazing. Ah to just watch and not worry, I wonder what that is like, I forget.

    August 7, 2014 at 2:24 pm
  • Carol says:

    Thank you for sharing this amazing experience with us. I have been looking forward to hearing all about this. Can’t wait to read more. Maybe, can you share what playing “GaGa” is? Sounds like fun!

    August 7, 2014 at 2:41 pm
  • Colleen says:

    I love reading this.
    Thanks for sharing your joy!

    August 7, 2014 at 3:52 pm
  • Briley says:

    The kids I nanny LOVE GaGa and have tried to teach it to me and I don’t understand it AT ALL.

    But playing and playing and playing without thinking sounds AMAZING!

    August 7, 2014 at 7:56 pm
  • Mike says:

    Thank you very much for sharing. Made me very happy.

    August 8, 2014 at 4:55 am
  • Scott E says:

    I admit I’ve been less than enthusiastic about the artificial/bionic pancreas projects out there because of all the maintenance that it still requires…. but then I read this and was totally blown away by it. After over 30 years, I guess I just forgot what it’s like to not worry about things.

    It’s really real…and yet I have a hard time grasping what it must be like. Though you’ve done a great job of describing it.

    August 11, 2014 at 3:39 pm

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