Here we go again…

I have always loved Halloween. I love dressing up and I love the excitement leading up to it. It’s probably no secret to those that know me well that I start planning costumes months in advance…and we don’t disappoint!For most kids, though, Halloween is about much more than choosing costumes.

It’s about the candy. C-A-N-D-Y.

Most people would expect that, as parents of a kid with type 1 diabetes, Halloween would be the holiday we dread the most.

And they would be right…but not for the reasons you would assume.

THIS is why I dread Halloween:

Halloween Diabetes
And this:
halloween diabetes 2
A year ago before Halloween I wrote a post in response to someone else’s blog entitled 10 Halloween Candy Alternatives That Won’t Give Your Kids Diabeetus. I realized then that there will always be people who choose to perpetuate stereotypes about this disease, simply because they don’t KNOW what it is. I also realized that there are people who back up jokes like these with the claim of “I was actually referring to TYPE 2 diabetes!”…as if that makes it ok. How about making a joke about cancer and saying “Oh! I didn’t mean breast cancer, I meant prostate cancer, silly!” Nope. Not ok. Another person’s illness or disease is not a joke…no matter what it’s called.This year I’ve decided that instead of being mad about these things, I’m going to channel my inner spirit fingers and let them help recharge my motivation (“Gimme a C-U-R-E!”). I know that our efforts to raise awareness and educate people about type 1 diabetes are helping someone…or many someones. I just know it.

I also know (ok, I just looked it up) that the word “ignorance” comes from the Latin ignorantia meaning “want of knowledge”. So you know what? We’re going to help the folks who continue to perpetuate the stereotypes about “diabeetus” (which, by the way, was only funny when it was said by Wilford Brimley) and keep supplying them with LOTS of knowledge.

You want it? You got it.
bees

Happy Halloween!

Bring it On…and Let’s Change the World~
Kristina

 

Three Words: Reflections from Friends for Life

fflI had just finished participating in DSMA (Diabetes Social Media Advocacy), the live Twitter chat that happens every Wednesday night at 9pm EST (which I’ve suddenly become addicted to). It was around 10:30pm and I finally sat down to write my blog post, reflecting on the Children with Diabetes “Friends for Life Conference” that we attended in early July. I typed my initial thought for the headline and an opening sentence…

That’s when I heard the crying and screams.

It was Isabella. She had been in bed and presumably asleep for an hour or two but was now awake and crying. I went upstairs to check on her…but she was already coming down the hallway on her way downstairs to see us. I asked what was wrong and she continued to cry; unfortunately, this scenario is not entirely unusual when you have nearly 4-year-old triplets who never want to go to sleep at night. Admittedly frustrated, I scooped her up and immediately knew something was wrong. Her little body felt like it was in a cold sweat. She continued to cry and wiggle around as she wrapped her arms tightly around me.

I suspected that her blood glucose was still very high (her levels had been high since we changed her insulin pod several hours earlier). I pulled out her meter and confirmed that she was in fact high (471!).  In and of itself this is not terribly concerning as her level can vary widely (after all, she’s a growing toddler!) and the solution is fairly straightforward – give her insulin to bring her level back down. The problem was that her level had been high for several hours and it was now clear that the insulin we had already given her didn’t seem to be having the desired effect of reducing her blood sugar level. Her pod likely wasn’t functioning or had come loose, which we hadn’t realized earlier.

We checked for ketones; if present in the bloodstream, ketones can lead to DKA, or ketoacidosis (resulting in a coma or worse). For the first time since her diagnosis, Isa had “medium to large” ketones, which is approaching very dangerous levels. I called the hospital emergency line to reach the on-call endocrinologist, and had prepared myself for what I thought would be our first diabetes-related visit to the ER since her diagnosis nearly two years ago. The doctor suspected that Isabella’s pump had not been delivering insulin for several hours and suggested we give her an insulin injection. Isa was scared…I guess she had already forgotten, or at least didn’t want to remember, the nearly fifteen-hundred insulin shots she received during her second year of her life. We replaced her pod and gave her an injection of insulin for the first time since she started on her OmniPod nearly 12 months earlier. Thankfully, within a couple of hours, her level came back down into range. With that, our diabetes crisis was averted.

I never did finish my “FFL reflections” blog post that night, so I wanted to finally share some thoughts. As I reflect on the conference, three words come to mind: inspired, hopeful and proud. Here are a few reasons why…

Inspired

  • We met and had the opportunity to hear from several athletes living with T1D that have accomplished amazing things: Jay Hewitt, Ryan Reed, Charlie Kimball, Sebastien Sasseville. These individuals truly inspire us and are great role models for our daughter; they remind us that anything is possible!
  • We met many great families, some of which we had already “met” in the DOC; I’m inspired by how they manage through this challenge day-after-day, month-after-month, year-after-year…while keeping a positive attitude, continuing to raise awareness and finding ways to overcome “diabetes burnout.”

    ffl mila

    Finally Meeting The Ferrer Family of “Jaime, Mi Dulce Guerrero”. Somos Amigos Para Toda La Vida!

Hopeful

  • We had the opportunity to hear about the Bionic Pancreas, a medical device currently being developed and tested by Dr. Ed Damiano and his team at Boston University. Dr. Damiano began developing this device as a commitment to his son, who was diagnosed with T1D at just 11 months old (he’s now 15). The technology is amazing and would enable Isabella and many others to live without having to worry or even think about diabetes every single day.
  • Isa started a trial of a Dexcom G4 CGM (continuous glucose monitor) during the conference. This was made possible by Jeff Hitchcock, Founder & President of Children With Diabetes, who asked if we were interested in participating in the trial. Jeff helped arrange everything with theDexcom team (who, by the way, are an amazing group of people!), and we were off. We’re hopeful her newDexcom CGM will help provide us with information to make more informed decisions about managing her diabetes…and will provide us with some sleep-FILLED nights!

    ffl jeff

    One of our Friends for Life – Jeff Hitchcock, Founder & President of Children With Diabetes

Proud

  • I was so proud to see Isabella seek out others with green bracelets (all those with T1D were wearing green bracelets) to introduce herself and say “I have diabetes, too!” She was so proud to show off her OmniPod and her new Dexcom…and that made me smile as I want her to be proud of who she is, embrace the challenges in her life and turn them into opportunities.
  • Isabella and her triplet siblings, Mia and Max, made so many new friends during the conference and I know they will truly make “Friends for Life” as a result of attendingFFL each year. That makes me one proud papa!

    ffl lenny

    The Trio with Lenny the Lion!

Overall, the conference was once again amazing. It is truly a great feeling to be with 800 other families that understand exactly what type one diabetes is all about and how it affects our family, both emotionally and physically (thank you to the family that gave me juice to treat Isa’s low by the pool!). The conference sessions are great and informative, but interacting with others affected by T1D and hearing about the amazing things they’ve accomplished living with diabetes is what makes this conference so special. Can’t wait for next year’s conference!

-Greg

 

What Faith Feels Like

faithFebruary 2010.

This was the last time we traveled anywhere together. No kids. No diabetes.

Fast forward to last week as we dropped the kids off at their aunt & uncle’s house and waved goodbye for 4 days.

Rewind just a bit to the two hours leading up to the drop off as we prepared bags for 3 toddlers…

“Do you have extra test strips in there?”

“The insulin in the kit won’t be enough for two pod changes…actually we should probably have enough for 3 just in case we have any pod failures. Oh, that means we should put a few extra pods in the bag.”

“Are there any alcohol wipes left in the pump kit?”

“I need to make the food list with carb counts…I’ll just send the pre-measured snack bin…that’ll be easier.”

Notice a trend? Not a single discussion about normal toddler essentials…pure “diabetes preparation panic” talk. No discussion about blankies or dolls, tooth brushes or diapers. Just straight “are we really sure we can put all of this responsibility on someone else?” talk.

But we did.

And you know what?

Aunt Shelly & Uncle Roy (and some Grandma Dar Dar thrown in!) rocked it.

We learned a big lesson this weekend about trust and faith. I’ve told people many times that when the nurse came in to our hospital room after Isabella’s diagnosis and said we could go home, I couldn’t believe it.  They were letting us LEAVE?!? I was terrified.  How would we possibly know what to do? How could they possibly believe we could manage this disease that we’d just met 4 days earlier? Did they not realize they were putting us in charge of our daughter’s LIFE?!?

A year and a half later I now know how they were able to let us leave that day: they had FAITH.

The first time your parents let you board that yellow bus…they had faith that the driver would get you to school safely.

As they handed over their car keys as you head out for your first solo drive…they had faith you wouldn’t believe the old “stop signs with a white outline mean ‘PAUSE’ myth”.

When your college roommate asked you to go to that party with her…she had faith you wouldn’t let her make bad decisions.

Stepping into your classroom as new teacher…your principal had faith you’d make a difference in your student’s lives.

Delivering your first child…you had faith in the doctor’s “Water Balloon Toss Champion – 1981” trophy displayed in his office.

I believe that parents are always nervous the first time they leave their child or children in someone else’s care.  The reality is that if we spend our lives worried about the “what ifs” with any of our children, we may never know what the “could’ve beens” might be. There exists so much uncertainty raising children, T1D or not, that it could very easily consume your every moment in life. We’ve chosen not to let it. We’ve chosen to trust and have faith that if we can learn how to manage Isabella’s diabetes, others can, too.

In fact, doesn’t it make sense to teach everyone in the canoe how to row? Let me know if you need a paddle. 🙂

Cheers to Changing the World~
Kristina

World Diabetes Day!

November is Diabetes Awareness Month and each year on November 14th, millions of people around the world celebrate World Diabetes Day.  Created in 1991 by the International Diabetes Federation and the World Health Organization, the day is celebrated with advocacy and awareness initiatives such as walks, monument lightings (including the Great Wall of China, the Christo Redentor in Rio,  the CN Tower in Toronto, the Empire State Building, the Puente de la Mujer in Argentina and the London Eye!) and free diabetes screenings.  The date November 14th was selected for World Diabetes Day in honor of Sir Frederick Banting, one of two men credited for the discovery of insulin and in 2007 it became an official United Nations Day!

So what will we do to celebrate Diabetes Awareness Month and World Diabetes Day?  We want YOU to help us!  Isabella’s super-creative aunt, Christy, founder of Christy Burke Designs has created our very own Inspired by Isabella version of the World Diabetes Day logo and we hope you’ll share it!  Just save the image below and upload it as your profile photo in Facebook, Twitter…or both!

As always, thanks so much for your support of our journey to a cure for type 1 diabetes…we truly couldn’t do it without all of you!

WDDlogo (1)

Why It’s Not Funny

 

Screen Shot 2013-10-13 at 11.12.21 PM

I get it.  I really do.  I get it because I was once just as unfamiliar with diabetes. I get it because at some point in my life I’m sure I’ve made some joke that undoubtedly served as a face-slap to an entire subset of the population who have been affected by whatever it is I thought was hilarious.  I get it.

But here’s why it’s not funny.

Someone shared this blog post on a Facebook group we belong to for parents of kids with type 1. They shared it with the hope that the T1D community would comment on the post and explain to the author how her title just perpetuates the stereotype that diabetes is caused by eating too much candy.  Many parents, rightfully hurt and some outraged, commented on the post with stories of their young children, some diagnosed with type 1 even before eating solid foods, let alone candy. Others shared their frustration about the lack of distinction between type 1 and type 2 diabetes; while others offered words of support for both T1’s and T2’s.

And you know what happened? The author added this disclaimer:

Now, I know that you can’t “GIVE” your child Type I Diabetes. Type I Diabetes, in children isn’t caused by a high amount of sugar in the diet. However, Type II Diabetes is another story. Fifteen years ago, type 2 diabetes in children was almost unheard of. A 2007 study in the Journal of the American Medical Association estimated that there are about 3,700 new cases of type 2 diabetes a year among youth in the United States.

And she missed the point.

Yes, many parents of kids with type 1 were upset by her original post, myself included.  However, the responses she received were not intended to simply make sure her readers were aware of the difference between Type 1 and Type 2.  The responses were intended to let her know one thing: our children’s livelihood is not a joke.  Regardless of whether someone has Type 1 or Type 2, this blog’s title is hurtful and just perpetuates a stereotype about what is a very serious disease.

The reality is that we have a lot of educating to do…not only about diabetes, but about kindness and respect. It’s easy to make assumptions about things we know nothing about.  It’s easy, and I get it.  I’ve done it, too.  What makes the difference, though, is owning up to it and making the commitment to educate yourself about what you don’t know.

However, there is one thing I do know: our Halloween is gonna be awesome…candy and all.

Tricks and Cheers to Changing the World~
Kristina

 

 

Silver Linings…

Betsy 2013 1509Just over a year ago Greg and I sat in our kitchen in Mexico City, laptop perched on the kitchen counter, deciding what we should set as our fundraising goal for our Team Inspired by Isabella’s first JDRF Walk to Cure Diabetes.  We had just returned home from the hospital after Isabella’s diagnosis and were ready to hit the ground running with doing something, anything, to help our daughter and raise awareness and funds for a cure.

Greg began completing our team registration and set our goal at $1,500.  I cringed and told him I thought maybe $1,000 or even $800 was a more realistic target.  We were, after all, just 3 weeks out from the walk date and we couldn’t expect people to just donate to a cause about which they knew nothing.

But I was wrong.

In just three weeks we raised nearly $6,500.

Sitting at our kitchen table this spring deja vu set in as I once again second-guessed what we had decided we would set as our fundraising goal for this year: $7,000.  We had time on our side this year and worked hard to share Isabella’s story with everyone we knew.  Our move back to the U.S. also afforded us the opportunity to reach out to our Ohio friends to organize a large team of walkers.

Three weeks ago we had raised just 53% of our fundraising goal and our hope of having walkers en masse looked bleak.  We had heard from others who had been doing these walks for many years say that “every team runs its course”.  We half-wondered if this had already happened to ours…Isabella’s diagnosis was no longer fresh in people’s minds and the novelty of supporting our cause had probably worn off.

But we were wrong.

Fast forward to today at 9am as we began our 2nd Walk to Cure Diabetes:

  • We didn’t raise $7,000…we raised nearly $9,000.
  • Of the 376 registered teams we were the 12th HIGHEST fundraiser.
  • We didn’t have a large team of walkers…we had the 3rd LARGEST team at the walk.  Fifty-five AWESOME people, to be exact.
  • We didn’t receive donations from some of the same people as last year…we received donations from nearly ALL of them and many others.  In fact, a total of 97 donations were received to support our team.
  • We entered the inaugural JDRF Walk to Cure Diabetes #iwalkfor video contest…and we won!  Anyone attending the Cleveland CAVS game December 7th will get to see our video played on the Jumbotron AND see our family center-court during the game!  (Click here to check out our winning video!)

So, if anyone asks us if the novelty of our cause has worn off, our answer would be this: type 1 diabetes is the definition of novel and no two days, let alone two hours, are the same.  So no, the novelty of our cause has not worn off and won’t until a cure is found. And as for our team “running its course”…not even close.

Cheers to Changing the World~
Kristina

Monkeys Always Make Things Easier to Explain

Coco ReadingImagine trying to explain Type 1 Diabetes to a 3-year-old. Now imagine trying to explain it to a whole class of 3-year-olds.  Sounds like a challenge, right?  Well, challenge accepted!

For weeks I’ve fielded questions from Isabella’s curious classmates as I checked her blood sugar and gave her insulin shots.  With Isabella starting on her OmniPod pump, I was thrilled that her teacher let me come in and read two books to her class about a new Disney character with T1D: Coco the Monkey. Not only does Coco have diabetes, she also wears a pump…just like our Isa!

The books follow Coco as she begins school and as she prepares to attend Goofy’s birthday bash.  I learned during our book reading  that 3-year-olds have very selective hearing (you’d think I’d be VERY familiar with this already) as the kids yelled out things like “My birthday’s next week, too!” and “I met Pluto this summer!”  Regardless, the kids did great and I loved seeing how proud Isa was to show off her pump to her friends.

If you are looking for a way to “explain” your child’s type 1 diabetes or their insulin pump to young classmates or friends, I highly recommend you check out these books.  Though not available for purchase, you can ask your child’s doctor for copies.  More info about the Disney partnership with Lilly can be found here: http://spoonful.com/type1.

Cheers to Changing the World,
Kristina

 

 

 

 

 

 

 

 

 

 

 

 

Sometimes, you just need a good cry…

lemonsIt was bound to happen…it just took a year.  Greg and I finally coordinated our emotional roller coasters to have ourselves a good’ ole cry tonight.  Now, it wasn’t waterworks, by any means.  It was more of a collision of emotions occurring whilst sitting down to dinner after a long weekend.  Either way, we needed it.

I’ve said many times before that  few tears have been shed since Isabella’s diagnosis. I would say that I had expected today to be filled with anxiety and apprehension…today was Pump Day, after all.  We knew Isabella would be a rockstar when it came to the actual pump hook up…and we were right.  No tears. No screams.  Just a simple “Where’s my cookie?” (Yes, I bribed her to sit still for the pump insertion.  Don’t judge me.)

However, 8 hours later we sat at our kitchen table, kids miraculously asleep, tears welling up in our eyes…in silence.  We were coming to the end of a day that felt much like a chart of Isabella’s blood sugar: a mix of high and lows.

My excitement about Pump Day quickly faded this morning as we listened intently to the trainer explain features of the device.

“You should keep the sound turned ‘On’ for now so you’ll hear if there is an error in the pump or a reminder…but when she’s a teenager she’ll probably want it set to ‘vibrate’.”

A teenager?  She’s not even 3!  This simple sentence painted a very real picture for us: Isabella will almost certainly STILL be managing her T1D in 10 years when she becomes a teenager.  For those of you reading this who haven’t been personally affected by this disease, let me share with you the thing we ALL hear shortly after diagnosis: “A CURE will most likely be found within the next 10 years.”  Sound familiar to anyone out there in T1D land? I am positive that I echoed this very phrase to multiple family members and friends just one year ago.  As much as I would love to believe this, my gut tells me we still have quite a bit of progress to make.

Greg and I also spent some time tonight talking about people’s reaction to seeing Isabella’s OmniPod pump. I wish every one of you could have seen her excitement when we arrived home and she jumped out of the car and ran over to Max to say “Look at my pump.  My insulin is in there…and it’s mine, not yours.” It also took all of 5 seconds for her to adorn the pod with Disney stickers featuring Jasmine and Ariel:)

We really hope that people ask, in curious and non-judgmental ways, what this thing is that is attached to her teeny arm.  We want her to wear it with pride and never be embarrassed by it.  I truly hope she always wants to bling it out and play “Pimp My Pump” forever (curse you, Xzibit, and your flashy grills), and that she has the power to take someone’s lack of knowledge about type 1 diabetes and turn it into a teachable moment (my college professors are beaming right now).

In the meantime, we’ll continue our work towards a cure.  After all, we still have 9 years to go 🙂

Cheers to Changing the World,
Kristina

PS-Thank you to all who have contributed to our JDRF Walk to Cure Diabetes Team this year!  We have met 66% of our goal and would love to have support from many others.  If you’d like to donate to our team, please click here.

Our Story and Glu!

Screen Shot 2013-08-27 at 9.51.48 PMWe received great news today that Glu, an online community for people with type 1 diabetes, posted an article about our family!  Not only that, it’s the feature story on their home page right now 🙂 What a wonderful way to celebrate the eve of Isabella’s 1-year Diaversary of being diagnosed with T1D.

Here’s a link to the Glu site so you can all check it out:

www.myglu.org

PS-Thanks to our very talented photographer friend Captured by Kelly Photography for taking the beautiful photos that accompany the article.