It’s not always about type 1 diabetes…

Isabella and Caroline

Isabella and Caroline

“Who’s Caroline?” asked Max. Isa responded in her sassy ‘I know everything and you don’t’ tone, “you don’t remember her, Max??”

I was driving the kids to school and it was the day after Isa and her new best friend forever, Caroline, had the honor of sharing their stories about living with type 1 diabetes during our JDRF One Walk kick-off luncheon. Caroline, an extremely well-spoken and inspiring 11 year-old girl, had the task of introducing Isa to the group after explaining her own journey with type 1.

I’ve heard Caroline and her dad — who I’ve had the pleasure of getting to know (it’s amazing how type 1 drives an immediate bond between parents!) — tell her story several times at similar JDRF events. And yet, I can never get through it without tears in my eyes.

This time was no different. Just as my eyes began welling up and I could feel the tears forming, Caroline introduced Isabella…

“Now I am excited to introduce one of my T1D friends who is a total rock star…she just got back from Washington DC with her mom and dad where they met with some of our country’s leaders and made sure they saw that Type 1 Diabetes affects real people…and in Isa’s case – super cute people!!”

Isa is surprisingly shy and since her mom likes loves the spotlight, Kristina shared Isa’s story, stressing the importance of advocacy, raising awareness and fundraising for a cure. I had the pleasure of holding Isa and trying to keep her away from Kristina — which is much easier said than done!

After lunch, Isa had a great time chasing Caroline around the room, knocking over chairs and playing with the microphone that she was afraid to touch just a few minutes earlier. With Caroline there by her side she was no longer the timid little girl on stage.

It’s funny, but Isa has always gravitated towards older kids. There are many reasons for that, but I sometimes wonder if type 1 diabetes is forcing her to grow up much faster than she should. I just want her to be a kid and not worry about T1D all the time!

I listened as Isa tried to describe her new BFF to her brother, Max, the next day.

“Max, you don’t remember Caroline?? Remember we saw her at that place? That place where we got the balloons?”

She was referring to another JDRF event that we attended a few months ago. I almost interrupted to say that she was the girl with type 1 that spoke about her diabetes….and that she had an OmniPod just like Isa. But, for some reason, I just listened instead.

Isa continued, “Remember, Max? She was the one with her hair in a pony tail?”

“Oh, yeah…I remember her!” Max said with confidence.

I just smiled — thankful that I didn’t interrupt to add my two cents — and pondered this exchange for a minute. Yes, like Isa, Caroline lives with type 1 diabetes. But, Isa won’t let T1D define her and she certainly won’t let it define her friends. To Isa, her new BFF is just an awesome, older girl with a pony tail.

It was an important reminder that sometimes as parents we need to see things from our kids’ perspectives. It’s not always about type 1 diabetes [or whatever else might be on our mind at that moment]. As a parent of a child with type 1 it is often hard to not think about T1D at every waking moment and the range of emotions that come along with it. Even if the thoughts fade away into the background, there is inevitably a medical device with an annoying, yet necessary, alarm screaming from across the room to remind me.

But, that certainly doesn’t mean that Isabella is always thinking about it. The majority of the time, type 1 diabetes is most likely not the #1 thing on Isa’s mind. And that is just fine by me. Like I said, I just want her to be a kid and not worry about T1D all the time.

~Greg

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.

kycie

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

Dear Type One Diabetes…

Dear Type One Diabetes,

You came into our life quickly and unexpectedly a few years ago when Isabella, our then 2 year old daughter, was rushed to the hospital. As you know, she spent 4 days in the hospital getting poked and prodded and pumped full of insulin. My wife and I sat there with tears in our eyes, our hearts aching with sadness and our minds filled worry of what our future would look like once we left that hospital room.

Before that trip to the hospital, we knew absolutely nothing about you. We also didn’t know that you had probably been around for a while. The signs we noticed in the weeks leading up to that life-changing hospital visit — extreme thirst, constant urination, weight loss — were surely completely normal for a growing and healthy 2 year old girl. But, we learned that those symptoms were the result of your hard work to destroy our daughter’s pancreas.

We were scared and, truthfully, we despised you. We wanted to completely erase our memories of you. How could you do this to our daughter? Why us? Why now?

We realized those questions would unfortunately never be answered. We immediately made a very conscious decision to accept our new reality. We made that decision while sitting right there in that dimly lit hospital room, which was filled with beeping machines, nurses and doctors. As hard as it was, we accepted that you would now be around every minute of every day for the rest of our daughter’s life. And we also accepted that there was nothing we could do to change that. Letting go was not easy but completely necessary. That decision meant that we had to accept that our new reality, which now included you as the 6th member of our already very busy household.

And that was the beginning of our new life with you. Our lives will never be the same. We now count every carb that Isabella eats. We prick her finger to check her blood sugar level up to 10 times per day. We’ve learned to give her precise amounts of insulin in an attempt to keep her blood glucose in the proper range….which is a constant battle that has fortunately ended in only one emergency visit to the hospital.

As much as I try not to, I spend a good portion of my time thinking about you. You are one of the very first things I think of when I wake up in the morning and usually the very last thing I think of when I go to sleep at night. I’m often awake multiple times in the middle of the night due to high or low glucose levels. I actually can’t remember the last night I slept through the entire night.

My wife and I have learned to operate on very little sleep, although she has certainly mastered this skill much better than I have. The truth is I’m extremely tired most days, thanks to you. As a result, my patience is low and my stress level is high most days.

I hate that since you came into our lives, my 4 year old daughter has to be connected to all of these medical devices and throws completely out of character temper tantrums for no apparent reason other than the fact you decided to screw with her emotions.

It makes me both angry and sad that Isa has had to deal with so much at such a young age. And as she gets older, I am scared that other kids will make fun of her for being “different” and she’ll come home crying. I know this day will come and I hope and pray that I can say the right things to make her smile and make everything better, even if only for that one moment.

It may seem that you have won. It may appear that you have beaten me down into despair.  You may be reading this with a sinister grin on your face as you envision me spending my days crying and living in fear of what may happen next.

I can assure you that couldn’t be further from the truth. My family Changing the worldlearned how to successfully deal with challenges long before
you came along. And we always overcome….always. You have not won and trust me when I say that I won’t let you win.

While I wish we never met you, our lives are perfect and I wouldn’t change a thing. My family laughs and smiles every single day, even with you lurking in the dark shadows. We have learned to roll with the punches and adapt to whatever is thrown our way. We are extremely resilient.

I am so proud of how Isa deals with all of these obstacles and does so with a smile on her beautiful little face. I am in awe of her strength and courage. Isabella is one of the strongest and most courageous people I know. I’m so proud that she inspires others with her story (even though she may not even know it!).

When Isabella was diagnosed, we decided to accept you and let go of what we can’t change. But, we also decided that we would fight for Isabella and all those living with type one diabetes! So, for the past two and a half years, we have done exactly that. We do everything we can raise awareness (including sharing Isabella’s story with anyone that will listen!) and raise funds to support diabetes research. And we won’t stop.

While we still wish we never heard of you, we also want to thank you. You must have come into our life for a reason. In some strange way, you inspired us to make a difference and play a small role in changing the world.


-Greg

Watch out Washington…here she comes!

More than two years ago, our lives changed forever when Isabella was diagnosed with type 1 diabetes just weeks shy of her second birthday. We were literally crushed with the weight of her diagnosis. We sat in that hospital room, just as far too many before us have, with tears in our eyes, sadness in our hearts, confusion and worry in our minds…and then something amazing happened.

We wiped away our tears and started thinking about how to turn this terrible, life-changing disease and experience into something positive. We decided right then and there, while sitting on that uncomfortable couch in that hospital room, that we would fight for Isabella and many others by raising awareness and raising money to support research towards a cure.

Our hope is that by sharing Isabella’s story we can inspire others and ultimately help change the world! We are proud of what we have accomplished over the past two years, but we still have a lot of work to do…

That’s why we are so excited to announce that Isabella was selected to be a Delegate for JDRF 2015 Children’s Congress! She was one of about 150 delegates selected out of more than 1,500 applicants! Isabella can’t wait to share her story in Washington!

Our little girl is just getting started on her path to change the world!

-Greg

Childrens Congress

Love and Life

pancreas heartWhile the kids eat dinner I sort through the pile of papers they bring home from preschool each day. Sheet after sheet of drawings, letters, numbers…indicators of their expanding knowledge and growing imaginations.

An intricately drawn image of Batman taking a nap while Daniel Tiger builds a snowman. And that large green square? That’s their recycle bin, duh.

A rainbow…minus brown because, well, “that’s an icky color.”

And a shiny red pancreas…no question to whom it belongs, the letters I-S-A staring up at me from the paper.

“Hey, Isa, did you draw this pancreas?”

“What pancreas?”

“This red one…with your name on it.”

“That’s not a pancreas…that’s a heart, mom.” (Insert frowny 4-year-old face)

I stared at the drawing that just a minute before I was sure was an exact replica of the I Heart Guts pancreas pillow we’d given Isabella a year ago.

I stared at the drawing that I assumed was my daughter’s way of illustrating a dream she has. Just as Mia dreams of sunny days after the rain, and Max of saving the earth one less landfill and bad guy at a time, Isa dreams of a pancreas that would just do its darn job already.

I stared at the drawing and realized that my interpretation of what Isabella had drawn wasn’t necessarily her dream…but mine. My interpretation was what I assume she spends her time thinking about: life without this disease. Life without needles and finger pricks. Life without carb counting and unpredictable highs and dangerous lows. These are the things I dream about…

But that isn’t what SHE dreams about. This heart…red and emblazoned with I-S-A…this is the organ that matters most to my daughter right now. A symbol of love and, most importantly, LIFE.

While I might secretly wish that Isabella understood how different her life would be without T1D, it’s days like this that I’m reminded that she is not defined by this disease. I’m reminded that she is allowed to have dreams filled with Sophia the First and cupcakes, without a test strip in sight. Her dreams don’t have to mirror mine. Life for her can, and SHOULD, be about more than her disease. Much more.

And while a teeny piece of me was excited that she’d drawn a pretty great pancreas, another part of me was happy to hear that diabetes isn’t the first thing that pops into her mind each day.  In fact, it’s probably not even the fifteenth thing.

So I say to my little one: You just keep dreaming of giant red hearts because that right there? That is the organ that truly matters most.

Cheers to Changing the World,
Kristina

To the Ends of the Earth…

Isa and Aunt Shelly

Isabella and her Aunt Shelly during the 2014 JDRF Walk to Cure Diabetes

**Thank you to Isabella’s Aunt Shelly for being our special guest blogger this week! We hope you enjoy her post below.

Over the weekend we kept the trio on Saturday night so Greg and Kristina could enjoy a night out to themselves. I swear that the cousins can never get enough of each other and would really prefer to just move in together.

Within about 2 hours of us getting back to our house and having dinner Isa’s blood sugar was high….220 to be exact. She ate dinner and it was just hitting her. I texted Greg to ask him a question about her insulin on board (IOB) and to verify that I should not adjust her insulin at this time and to give her insulin time to work. He verified that was the right thing to do. See?  I’m getting pretty good at handling this stuff by now.

The rest of the night was uneventful. The kids ran around for a little bit until we settled them down for a movie and put them to bed. They were all pretty tired and went right to sleep. We’re pretty good at that as well….7 kids in the house and all go right to sleep…no problem.

Within 30 minutes of bedtime Isa’s continuous glucose monitor (CGM) started beeping telling me she was low. I checked her and she was definitely low….56 to be exact. That’s pretty low if you’re wondering. I gave her some juice and her number came up to 80 within about an hour.

Unfortunately she hovered around that 80 all night which meant a constant beeping CGM and more juice throughout the night. Trying to get a 4-year-old to drink juice in the middle of the night when she really doesn’t want it isn’t an easy task for sure. By 4am I put my husband on that duty and he finally got her to drink the rest of what was left of what we were trying to give her.

What I remember distinctly from that night is that I sat in my bed and do what I do best: I prayed. I prayed for Greg and Kristina first. I prayed for their guidance and for their support through this as I know this cannot be easy day in and day out on a parent. Mostly, I know it cannot be easy watching their little girl knowing she’s not going to wake up better the next day. Then I prayed for Isa…like I do so often. I prayed for her strength. I prayed for there to be a cure one day. I prayed for the doctors taking care of her. I prayed that as she gets older she is able to take care of this on her own and doesn’t rebel. I prayed that she be ok in the morning…..this was my biggest prayer in that moment, and I’m sure one that Greg and Kristina worry every night when they go to bed.

The next day Greg told me how to temporarily turn off Isa’s basal insulin on her pump so she stops getting it…which is probably what needed to occur the night we had her so her numbers could come back up. That’s the thing with this disease: there is no simple answer. A lot of it is trial and error and seeing what works best for you or what works best in the moment. Type 1 Diabetes is manageable, but the scary part is that you just never know. One wrong move and the person dealing with this disease could be in a coma or not wake up.

I am always in awe of Greg and Kristina’s willingness to let us keep their little girl without a second thought. I never, not one time, have felt like they worry about Isa when she’s with us. I second guess myself sometimes about what I could have done differently and I would go to the ends of the Earth for my niece. I love her like I love my own children. Kristina and Greg are educating so many through their guidance, their love and their patience with this disease. They are giving Isa the tools to one day, when she’s older, be able to go out on her own and conquer the world. Hopefully when that happens they will not worry about her quite as much because she’s been trained so well. I am in awe, as always.

~Shelly

Why we continue to fight

As the father of a small child with type one diabetes, I’m somewhat forced to live in a state of constant uncertainty and worry. Type one diabetes is like a never-ending roller coaster of numbers, highs/lows and emotions. Although Kristina and I have always approached diabetes management like we do most challenges — as a team and with the most positive outlook possible — it’s often hard to not let T1D-related questions and concerns consume my every thought.

Did I count those carbs correctly?

Did I give her enough insulin? Too much insulin?

What’s her current number? Is she going up or down? Why? Why not?

Did her insulin pump stop working? Did the insulin go bad?

Is she sleeping? Or is she unconscious?

That last question is by far the biggest worry. I’ve gone into Isabella’s room in the middle of the night to check on her countless times since her diagnosis more than two years and each time I wonder (even if for only a split second) if this will be the day that Isabella suffers some sort of life-threatening diabetes-related complication. I pray that day never comes. But I also pray that Kristina and I will have the strength to deal with it if it does.

Unfortunately, on June 9th, 2014 that day came for Katie Schwab and her family. Katie, a recent college graduate living with T1D since 2008, was found unconscious as a result of diabetes-related complications. One day Katie was fine and the next day she was in a coma. No warning. Just like that.

Katie and her family are now 7 months into their journey. Katie endures physical, speech and occupational therapy sessions on a daily basis. Her recovery is progressing, but at a slow pace. Importantly, she is surrounded by the love, support and prayers of family and friends. My thoughts and prayers are with Katie and her family as they continue along their journey.

Katie’s story is an unfortunate reminder of why we continue to fight…not just for our Isabella, but for Katie and millions of others living with type one diabetes.

-Greg

You can watch more about Katie’s story here:

Shaping Friendships

Just before Thanksgiving the stars aligned and just like eHarmony for the T1D world (dHarmony?) we met a sassy blogger online named Libby. A twenty-something who also happens to be pancreatically-challenged, Libby asked us if she could interview us for her blog and we were pumped (pun totally intended).

I told Isabella that a new friend with T1D wanted to interview her…which set off a string of questions about who this mystery girl was, what kind of ice cream she likes and whether or not she’d seen Frozen. She was excited and I was, too.

After our interview with Libby (which was chocked full of so much awesome that I’ll let you read it yourself) we decided we wanted to send her a thank you card and one of our fab Inspired by Isabella t-shirts. Of course, being 4 years old and looking for any excuse to get marker on my nice, Amish-made table channel her inner Warhol, Isabella said SHE wanted to make the card. The “card” turned into half a dozen drawings and notes, dictated letter by letter by me, to our new friend Libby.

“Does ‘Libby’ begin with an ‘L’, mom?”

“Are there one or two ‘o’s in ‘love’?”

“How do you spell ‘best friend’?”

And that right there made my eyes start to leak.

Isabella brought me her stack of notes and drawings and as I thumbed through them I stopped at one. It was a drawing she had made of her and her new BFF, surrounded by flowers and a rainbow, their names scribbled to indicate who was who.

libby

It was hard not to notice the numerous shapes Isabella had drawn up and down the two figures, seemingly random.

“I love this drawing, Isa. Can you tell me what these shapes are on you two?”

“Those are our sites…for our pumps and cgms.”

And I could feel my heart sink.

But then I noticed something else. Smiles. Both the stick figure image of Isabella on the paper and the pigtailed toddler standing in front of me had smiles spread across their faces.

And I knew. I knew that Isabella had found someone else she could draw who also had shapes running up and down them like a highway of reminders of this disease. She was smiling because she had found someone to look up to and to show her that she shouldn’t be ashamed of these shapes. And while her shapes will never define her, they are a part of her story.

Thank you, Libby, for helping Isabella embrace her shapes…and for sharing her journey.

Cheers to Changing the World~
Kristina

Guilt

laughterTears. Lots of tears.

Arms flailing, screams echoing through the house. A chorus of doors slamming and feet stomping rattle the walls.

Dr. Jekyll, meet Mr. Hyde.

So often people tell us that Isabella seems so happy, always full of smiles. We share photos of her with her silly grin, stretching from ear to ear, proud of this and happy about that. To the outsider she seems like a toddler full of so much joy, conquering each daily challenge with a hop in her step and a shine in her eyes.

But not today.

Today she is losing…and so are we.

One of the many challenges of type 1 diabetes is that its affects can vary person by person. Some can feel their lows coming, getting tired and shaky. Others, like Isabella, show no sign that their blood sugar is falling to a dangerous level. In fact, Isabella is almost always giddy and laughing when she is low.

As difficult as it is to tell her lows, her highs are hard to miss. The happy, goofy 4-year-old disappears and an anger-filled stranger takes her place and, as has become routine, she is exiled to her room until she calms down…usually falling asleep, exhausted from screaming and crying.

And I feel guilty.

I feel guilty because I know her body is playing a mean game of “Perfection”…just waiting for the sand timer to run out while trying everything to get her blood sugar back in range before scattering all of the pieces to the ground. No matter how hard we try, it always seems like the sand is faster than the insulin running through her body and we lose…a lot.

But there she is, sent to her room to cry it out and sleep it off. Kept home from a classmate’s birthday party because of her diabetes-assisted tantrum. Punishment for a disease she didn’t choose and for effects she can’t control.

And I feel guilty.

We get home from the party and prepare for bath time. I’m still angry at Isabella for her earlier fit, and even more frustrated that she doesn’t understand why she couldn’t go with her brother and sister. As she steps into the tub a mix of emotions hit me as I catch a glimpse of the technology keeping her alive. An insulin pod attached to her arm and her continuous glucose monitor embedded in her lower back…my robotic daughter.

And I feel guilty. And I am mad. Mad at this disease and mad at what it does to my beautiful little girl. Mad that I can only control so much and mad that I feel guilty for trying to parent the best way that I can.

And tomorrow we’ll flip the sand timer again…

Cheers to Changing the World~
Kristina

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