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

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

A Glimpse Into the Future of T1D

pancreas pillow

Isabella and her “I Heart Guts” Pancreas Pillow

On Tuesday, Kristina and I had the opportunity to attend a JDRF research update featuring Tom Brobson, National Director of Research Investment Opportunities. We were excited to hear about the research going on at JDRF and, selfishly, what it means for our daughter now and in the future.

On the way to the event, Kristina mentioned that while she was changing Isabella’s insulin pod in the morning before school, Isabella looked at her and said, “Mommy, I don’t want to wear a pod anymore.”

My heart literally sunk and I felt tears welling up in my eyes. Isabella has never said that. She’s been on her pump for about 8 months or so and for the most part, she understands why she wears it and understands that she doesn’t really have a choice. But, she doesn’t fully understand that it will never be a choice…she may eventually choose a different pump, or may even choose to go back to injections…but the harsh reality is that she literally needs her insulin pump to survive every day of her life. That is, until a cure, or at least something that “feels” like a cure, is found. I began thinking, hoping and praying that we would hear promising news from Tom Brobson at the event.

Tom started his talk by saying, “I don’t have any extra letters after my name like PhD or MD…but I do have T1D.” Tom was diagnosed with type one diabetes about 10 years ago, at the age of 44. He joined JDRF about a year later, hoping to do his part to find a cure for himself and many others. As he spoke passionately about several key research initiatives, it became very clear that Tom was not only passionate about JDRF and the great work the organization is doing, but he was also passionate about making the lives of those living with type one better, including his own, on the path to a cure. He became somewhat emotional a couple of times as he spoke; this isn’t just his job, but his life!

Tom spoke about three main research initiatives, Smart Insulin, the Artificial Pancreas project and Encapsulation. Each of these initiatives have gone through various stages, navigating through the lengthy and quite costly FDA approval process. I expected to hear about how these three initiatives were showing very promising results in mice, cats or better yet, monkeys. The great news is that all three of these programs are currently in the human trials stage or entering human trials soon!  This means that we are that much closer to a dramatic change in Isabella’s life!

Smart Insulin has been in the news recently as Merck, one of the world’s largest pharmaceutical companies, announced earlier this week their plans to begin clinical trials. Smart Insulin, which was originally backed and supported by JDRF, is a form of insulin that is injected perhaps once daily and essentially turns “on” and “off” according to glucose levels. No more glucose checking. No more carb counting. No more dangerous lows. Isabella’s body could get the insulin that her pancreas can’t produce, without any additional effort or monitoring. This would be huge! As Tom put it, this could be “a game changer.” Not only for those living with type one, but also for those living with type 2 who aren’t often prescribed insulin. That’s all great news!…but unfortunately, Smart Insulin is still many years from becoming a reality.

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Tom Brobson, JDRF National Director of Research Opportunities, showing us the artificial pancreas technology.

Tom also spoke at length about the Artificial Pancreas project. The Artificial Pancreas is not what it may sound like (no, it’s not a lab-produced pancreas that’s implanted into your body to replace the “bad part”). It’s essentially a computer program that can run on a smartphone…and essentially functions as a pancreas to ensure insulin is adjusted up or down when needed.

Tom has personally participated in several trials. He talked about one trial in which he was hooked up to the system and then was told to go eat a Five Guys burger and fries, which he gladly did, although he was quite skeptical at the time that the system would actually be able to keep his glucose under control (certainly not as good as he could on his own!). To his surprise, after eating a giant burger and fries, the system was able to keep his blood sugar under 200 and then bring him back within his normal range in a relatively short amount of time. There’s a word to describe this: amazing!

The system has performed extremely well in clinical trials. Tom mentioned that he is generally very tightly controlled and tends to be “out of range” only 4-5 hours per day. When he was on the system, his “out of range” time dropped to about 40 minutes per day. A new trial is starting soon and people will basically be handed an iPhone with the system and told to go live their lives for 6 months. After the trial, the hope is that the data and results will be sufficient to obtain FDA approval for the Artificial Pancreas. This could be 2-3 years out…while not a “cure,” it would certainly change Isabella’s life and enable her, and us, to live our days and nights without constantly thinking about her type one diabetes.

I asked Tom what he felt was the most exciting and most promising initiative underway at JDRF, fully expecting him to say the Artificial Pancreas. But, instead he talked about “Encapsulation.” To describe it, used the analogy of a shark cage. If you want to observe sharks, you could get into a cage where you would be fully protected and unharmed from sharks that want to eat you. The concept behind encapsulation is very similar…JDRF is working with partners to be able to insert beta cells into a small medical device that would be implanted into the body and protect the cells from other dangerous cells that want to destroy them. The beta cells would produce all the insulin you would need for up to 24 months. This also wouldn’t be a cure…but two years without worrying about diabetes is pretty damn close! This is still a long way off before it could be used as a treatment, but very exciting nonetheless.

So, the bottom line is that we heard a lot of very exciting stuff that inspires us and gives us hope! In speaking about his view of a cure, Tom said, “someday someone will write a book about the cure for type one diabetes and I wish I knew what chapter we were on now.” Don’t we all.

I had an additional opportunity to meet with Tom again Wednesday morning in a smaller group session at our Northeast Ohio JDRF Chapter Board meeting. He talked about the research initiatives and the fact that they are getting closer and closer to reality, which also means they become much more expensive. In talking about JDRF’s efforts to date and current efforts to push into the future, he said, “we’re the type that will take this on and change the world…but we need your help.”

Please help and join us on our journey to a cure for type one diabetes. Together, we can change the world!

-Greg

 

Why We All Need A Patty

Isa and Addison

Most people would look at this photo and see two little girls, happy and smiling…without a care in the world. What you’re really looking at are two AMAZING 3-year-olds fighting the challenges thrown at them by type 1 diabetes.

We had an awesome day with little Addison and her family today where we enjoyed pizza,  pump site changes (one planned and one not!), high (400) & low (48) blood sugars, and the beginning of an adorable friendship between two toddlers who’ve found a friend that “has didabeeeteees too!”

Watching Addison ask Isa if she wanted stickers to decorate her new insulin pod and holding her hand during her site change…and seeing Addison timidly show Isa her continuous glucose monitor adorning her little belly…it made me realize just how much it matters to have someone by your side who’s fighting the same battle as you. And I’m not just talking about the girls.

When Isabella was diagnosed we were in the hospital for less than 24 hours when we had a knock on our hospital room door.  In walked a woman that, though I didn’t realize it at the time, would set the scene for how I would be as a mother of a child with T1D.

Over the next hour this woman, Patty, told us about her life as a mom and wife to children AND a husband with Type 1.  She gave us a book of information about diabetes care she had photocopied from when one of her children was first diagnosed. She told us about diabetes camps and the difference they had made in her children’s lives.  She smiled. She laughed.  And her hair and makeup looked great.

She was normal.  

I wanted to be like Patty.

Before Christmas this past year a classmate of Isa’s was diagnosed with Type 1.  Up until that moment Isa had been the only child in her school with diabetes.  I didn’t know the family of this newly diagnosed child and had heard they would be moving and leaving the school over the holidays.  The day before the holiday break I went to the school to pick up the kids and, almost as if it was meant to be, the little boy’s father was there picking him up.  I am a firm believer in fate, and this was it.  It was my turn to be Patty.

I passed our contact info on to the dad and encouraged him to reach out to Greg or I if he or his wife needed anything. I told him about our experience with the OmniPod pump and about the Children with Diabetes Friends for Life Conference we attended in Orlando. I told him we were just a year post diagnosis so we were still learning, too, but that we could certainly provide advice based on our short experience. I was sure I’d return home that day to an email from this family with a list of questions I could answer. 

I was wrong. I was obviously no Patty.

Today while chatting with Addison’s mommy and daddy I was reminded of how important it is for parents of T1D kids to connect. To share stories of what’s worked and what hasn’t.  To commiserate about those unexplained lows and to curse the technology that, in reality, is helping us keep our children alive. To beam with pride when our kids exhibit bravery we could never muster.

We all need a Patty to remind us that our lives as our kid’s substitute pancreas won’t be easy, but to keep in mind that our kids will take their cues from us. It’s up to us to assure them that their diabetes, though a part of who they are, doesn’t define them. It’s up to us to let them know that there is an Addison somewhere out there to hold their hand.

So, for those of you who are newly diagnosed, or those who have just gotten the courage to seek out some support, we are here. I may not be a Patty but I can assure you that my hair and makeup look great, too.

Cheers to Changing the World,
Kristina

 

Reflections From A Substitute, Substitute Pancreas (AKA: Aunt Shelly)

As we sat in the airport club waiting to board our flight to Las Vegas…our first trip away from our children and since Isabella’s diagnosis…I sent a quick text to Isa’s Aunt Shelly: “Would you be interested in writing a guest blog about your experience managing Isa’s diabetes this weekend?” Her response: “That would be awesome.”  So, here you have it:)
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Isabella and her Aunt Shelly

Isabella and her Aunt Shelly

Last summer my brother asked me if I would watch the trio so he and Kristina could have a long weekend away.  “Absolutely,” was my response.  In December, Greg decided to surprise Kristina for Christmas and take her on a 4 day trip to Las Vegas right after New Year’s and asked if I was sure we were ok with watching the kids.  Again – “absolutely,” I said. I realized that I would be charged with not only adding three 3 year olds to our family of 4 kids, but I would be managing Isa’s T1D. The fact that I was entrusted to take care of Isa was an honor that I didn’t take lightly. I knew I was up for the challenge and off they went…..

Greg and Kristina dropped the kids off on a Wednesday night and thus started Isa’s monitoring.  I was given some base numbers to decide if I should check her in the middle of the night or not, but had already decided that I would feel better just getting up and checking her to be sure all was ok. This meant that I would be checking her around 11:00pm before I went to bed, and then setting my alarm to check her at 3:00am.

Over the next few days I realized that having T1D is very much like having a newborn again. Her glucose must be checked every 2-3 hours and she eats something after each check while inputting her carb counts into her OmniPod insulin pump.  I’ve never had to worry about what food or snacks to give my own children. I just feed them whatever we are having and if they want a few cookies after dinner then so be it.  With Isa, that is so different. I wanted to ensure that each meal and snack had what she needed to keep her levels in check. Overall, I think it went pretty well. She had a day of some higher numbers that really couldn’t be explained unless it was from the one small cookie that she had the day before. She also had some lower numbers in the middle of the night that I offset with some glucose gel to ensure she didn’t drop too low before she awoke. I now know that sometimes, no matter how accurate your carb inputs are or how much you do right, you just can’t explain some of the high and low numbers.

Throughout the 4 days everyone in the house was checking Isa’s glucose for her and at one point she said “Aunt Shelly, none of my cousins are checking me today.” She loves her cousins and definitely feeds off of the attention they give her.

On Saturday morning I was cleaning up from breakfast and all the kids were in the basement playing. I went down to see what they were doing and they were all lined up in front of Isa. I was told that she was “checking” everyone’s levels. It was so cute that they were all pretending to have their fingers pricked, but also sad when I thought about the reality of this for Isa.

Isa had to have an insulin pod change while she was with us as they expire after 3 days. We started the process and she was very positive. She told me it would hurt when the needle went in. I asked her to squeeze my hand to help her. She didn’t even flinch and had not one tear.  That was a proud moment for me.

The day came for Mom and Dad to pick up the kids and I must say I was a bit sad.  As busy as we were taking care of all of them and especially taking care of Isa, I felt a bit empty at their leaving.  I feel honored that I would be trusted to take care of Isa’s life because that’s basically what I was in charge of. Isa’s levels must be monitored constantly and the insulin she receives keeps her alive. I have a whole new respect for this little girl. While she has T1D, the reality is that she’s just a little girl that doesn’t really have a clue of the enormity of the card she has been given in life. I am confident that her independent attitude will take her wherever she wants to be. She lights up the room with her laughter and smile. I will be right there with her along this journey and am thrilled that I get to be her aunt.

Why It’s Not Funny

 

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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

 

 

And Just Like That, Year Two Begins…

Not Cool Pancreas

She loved the t-shirt we made for her: Not Cool, Pancreas…Not Cool. 🙂

A year ago today we sat in Isabella’s room at the Hospital ABC in Mexico City on DAY 2 of her life with T1D.  Today we began YEAR 2.

Yesterday was amazing…Isabella’s journey was celebrated not only here in Ohio, but also in Texas and Florida. Though we have so much to be thankful for, I have to admit I am looking forward to the day we can celebrate a cure for this disease.

Over the past 24 hours we’ve received some very generous donations from friends, family, and strangers to support our team in the upcoming JDRF Northeast Ohio Walk to Cure Diabetes.  Words can’t begin to express our gratitude to everyone who has joined us on our journey to a cure for type 1 diabetes…we are truly blessed.  A year ago we would never have imagined all that we would experience and accomplish since Isabella’s diagnosis:

-We’ve met some amazing people who also have T1D in their lives;

-Become deeply involved with JDRF (including Greg’s board appointment to the Northeast Ohio chapter);

-Visited the DRI (Diabetes Research Institute) where we met with diabetes researchers;

-Reached nearly 600 Facebook followers and the same number of Twitter followers;

-Led teams participating in JDRF walks in Ohio and the FIND walk in Mexico City;

-Attended the JDRF Hope Gala in Miami;

-Created partnerships to raise funds (including jewelry, t-shirts, hair bows, and ornaments);

-Partnered with amazing businesses to host successful fundraising events;

-Won 2nd prize in a diabetes awareness photo contest sponsored by the JDCA;

-Attended a Children with Diabetes Conference at Disney;

-Been profiled in various online and print publications;

-Launched this website (yay!);

-Raised nearly $14,000 and counting towards diabetes research…

And we’re not done yet 🙂

As promised, here are some photos commemorating Isabella’s 1-Year Diaversary yesterday!

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Waiting to greet her party guests!

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Family and Friends Celebrating Isabella’s Diaversary in Ohio

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Blue (sugar-free!) cupcakes!

 

 

 

 

 

 

 

 

 

 

 

 

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Isabella’s aunt and cousins organized a balloon launch in Florida to celebrate with us!

Oma Opa Blue Day

Isabella’s Oma, Opa, and cousin supporting her Diaversary in blue all the way from Texas!

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