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

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

 

Defining a ‘Cure’

Isabella and Brynlee, T1D BFFs

Isabella and Brynlee – T1D BFFs

 

According to Webster’s, there are three definitions of the word “cure”:

1) Something (such as a drug or medical treatment) that stops a disease and makes someone healthy again

2) Something that ends a problem or improves a bad situation

3) The act of making someone healthy again after an illness

The definition that isn’t provided by Webster’s is the one you tell your four-year-old who is battling said disease/bad situation/illness.

But today I tried to define it.

Isabella has been overwhelmed with all of the hoopla over the past two months as we held fundraisers, ordered t-shirts with her likeness, and held special events in her honor. And it was great. No…it was amazing. To the tune of almost $15k in funds raised amazing.

For a cure.

A cure she didn’t know could exist.

Until today.

While brushing her hair this morning Isabella asked me the question I had been subconsciously dreading for the past two years: “What’s does ‘cure’ mean, mom?”

Bravery x 2

Bravery x 2 – Isabella and Addison

Isabella can read a facial expression like no other toddler I’ve met. I was grateful that she’d asked for double side ponies this morning instead of her usual side-swept style. I was behind her and she couldn’t see my face. She couldn’t see the wrinkle appear between my eyebrows, as is common when I’m caught off guard with a question I don’t know how to answer.

But she could tell by the delay in my response.

“Is a ‘cure’ for me, mom?”

I put the brush down and I moved in front of her so she could see me…so she could know that what I was going to say was the truth.

“Yes, it’s for you. A ‘cure’ would mean you wouldn’t have diabetes anymore.”

After a second or two she looked at me with the face of someone who’s just come to an amazing realization about something.

“And Addison and Brynlee? And Maeve and Lucas? Oh, and Miss Knox? And…”

As I listened to Isabella continue to name off, one-by-one, all of these young people living with type 1 whom she’s met since she began this journey just over two years ago, I realized that Webster’s got it wrong with their second definition of ‘cure’:

2) Something that ends a problem or improves a bad situation

 

Yes, a cure would end our journey with type 1 diabetes. And, yes, that is what we hope and pray for every day.

Isabella and Miss Knox!

Isabella and Miss Knox!

Where Webster’s gets it wrong is this: our lives have been made BETTER because of type 1 diabetes. Yes, BETTER. All of those people Isabella rattled off? They have made our lives BETTER. All of the challenges we’ve had making sure Isabella is safe at home and school each day has made us BETTER parents.

Does this mean we don’t need a cure for this disease? Of course not. What it does mean is that I wouldn’t change the path we have been on because, as a result, we have had the chance to make a difference. To educate people about this disease and the signs and symptoms to look out for as the numbers of kids diagnosed grows each year. To spread awareness about differences and help people understand that kids with challenges are regular kids.

As I slid the last Hello Kitty rubber band into Isabella’s hair I turned to look her in the eyes.

“Yes, Isa…the ‘cure’ will be for all of you. And the ‘cure’ will be BECAUSE of all of you.”

And it will.

Cheers to Changing the World~

Kristina

 

The #TBT No One Wants To See

hospital2 Nearly two years.

Now, more than half her life.

Every day. Forever.

Sitting in the standard metal hospital chair, I looked over at Isabella.

Everything seemed the same…just the crib swapped out for a rolling bed.

Hadn’t we just been here?

Didn’t we just experienced the exact same blood-drawing, IV-inserting, stabilizing-levels process?

Hadn’t we just watched helplessly as tears streamed down her face…her little tourniquet-wrapped arm outstretched and reaching for us as blood trickled into multiple vials for testing?

Weren’t we just told that our daughter was very sick…and how lucky she was that we’d brought her to the ER in time?

So many times since Isabella’s diagnosis we’ve heard stories from friends and strangers about the many complications that can come along with type 1 diabetes. And so many times we’ve talked about how lucky we must be that Isa is almost two years post-diagnosis without complications. Didn’t we deserve some “Understudy Pancreas of the Year” award? We were like the Mr. Miyagi of diabetes management…mastering it left and right. I mean, if we did everything right it just makes sense that we’d have smooth sailing…what could possibly go wrong that we couldn’t predict?

Actually, everything.

That’s the thing about this disease: it’s unpredictable. No matter how many devices we use to manage/track/dose…there will always be that unknown.  hospital1

Isabella was admitted to the hospital yesterday with Diabetic Ketoacidosis (DKA) after blood tests in the ER revealed she had large amounts of ketones in her blood stream. If left untreated, the amount of toxins in the blood can result in a coma and can be fatal.  The cause of DKA varies and, as was the case with Isa, it can develop rapidly.

We are now home after 2 days in the hospital and Isabella is back to her old self.

But we aren’t.

Because now we know. We know T1D doesn’t play favorites. There are no “lucky ones”. This is a disease that leads the body to attack itself. ITSELF. It is unpredictable and it is dangerous.

And for Isabella, it’s her life.

For now.

“First learn stand, then learn fly”…wise man, that Mr. Miyagi.

Cheers to Changing the World,

Kristina

PS- THIS is why we are working so hard to raise funds and awareness for a cure.  If you would like to support us in our efforts, please visit: www2.jdrf.org/goto/inspiredbyisabella.  Thank you for joining us on our journey to a cure for type 1 diabetes!

 

 

 

 

 

 

Now, we wait.

trioChecking…

Checking…

We stared intently at the meter, seemingly taking forever to provide a blood sugar reading.

Checking…

Checking…

84.

And with that we released a sigh of relief. Today would not be the day we had another child diagnosed with type 1 diabetes. Nope, not today.

This wouldn’t be the first time we’d checked one of the other kid’s blood sugar…and it probably won’t be the last.

Since Isabella’s diagnosis almost two years ago it’s become commonplace for people we meet to express their surprise that just one of our trio has T1D.

“She’s the only one? Hmmm, that’s so interesting.”

“Are you worried about the other two ‘getting it’?”

“Well, you know the warning signs so you’ll be prepared if it does happen.”

“At least you know how to manage it already.”

Truth…but a painful one to think about.

During the Children with Diabetes Friends for Life Conference in 2013 we learned about TrialNet – a two-part clinical study being conducted by “an international network of researchers who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes.” We stopped by the TrialNet table during the conference and spoke with someone about our family participating in the screening that checks for autoantibodies that are predictors of type 1 diabetes development.

We left the table with a stack of forms to complete so that Isabella’s brother and sister, as well as Greg and I, could be tested during the conference. As we packed our bags four days later I remember tossing the papers into the hotel room trash can. We couldn’t do it.

There are many schools of thought on whether it’s better to know that something bad is inevitable, or to live life as it is and just take what is handed to you as it comes. Would we do anything differently if we knew, with a good amount of certainty, that one or both of Isabella’s siblings would also develop type 1? Would it change the way we are living our life today? Would we just be in a static state of paranoia – checking their blood sugar regularly to see if ‘today is the day’?

The answer is: I don’t know.

You never know how you’ll react to news you don’t want to hear. You never know if you’ll be able to hold it together so that your kids don’t see the breaking of the Hoover Dam that is bound to happen behind your eyes. You never know if you’ll wait…and wait…and wait…for nothing to ever happen.

And you never know how strong you are until that’s the only option you have.

Two weeks ago during this year’s Friends for Life Conference our TrialNet paperwork made its way to the scientists. We all held out our arms for the blood draw that will ultimately let us know if anyone else in our house has the autoantibodies that predict type 1 diabetes. Two weeks ago we made a decision that we wanted to help advance the research into this disease and that, by participating in this study, we would be helping scientists understand more about T1D and move towards finding a cure.

Sitting at the hotel pool later that day I met a woman who told me her non-type 1 child had participated in TrialNet the year before. She told me, with tears forming behind her sunglasses, that the day they got the phone call with the results was harder than the day her type 1 child was diagnosed. The test had come back positive for the autoantibodies. Now, she told me, they just live in a state of limbo since, technically, her other child hasn’t been diagnosed. A state of limbo waiting for the excessive thirst, frequent urination, weight loss…waiting for the day they “officially” become a family with two kids with type 1 diabetes.

So now we wait. But we wait knowing that, regardless of the call we might receive in a few months when our results are ready, we are part of a bigger picture. A picture of hope that one day two mothers can sit on the poolside watching their children play – no medical devices attached to their bodies keeping them alive – like kids should do…without a care in the world.

Now, we wait.

Cheers to Changing the World~
Kristina

Grandma Gets It: Diabetes and Disney

*Our family had the opportunity to attend this year’s Children With Diabetes ‘Friends for Life’ Conference held each summer in Orlando.  This was our second year attending the conference and we decided to invite one of Isabella’s grandmothers, Darlene, to join us. While we will be sharing our own thoughts on the conference (look for 2 additional posts from us with our mom & dad reflections), we also asked “Grandma Dar Dar” to write a guest blog about her experience.  We hope it will encourage other grandparents, aunts, uncles, and extended family to consider learning more about caring for a child with type 1 diabetes…the more people a family has on their diabetes care team, the better!

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10462813_10204275358389968_7432120789970787352_n

A great night at the Friends for Life banquet!

I spent an incredible week with my son Greg, daughter-in-law Kristina and triplet grandchildren, Isabella, Mia and Max in Orlando for the Children with Diabetes Friends for Life conference. When they invited me to go with them, I had no idea what all was involved.

The conference didn’t start until Wednesday so we spent the first 2 1/2 days at the Disney parks and it was such fun. I think we stood in line to see every Disney princess possible…as well as Mickey and Minnie. The kids were so excited.

We went on rides, too, and while waiting in line for one ride, Isabella pointed to a little girl in front of us and said that she had a green bracelet on. Her dad asked her what it meant and she said that the girl had diabetes. We hadn’t signed in for the conference yet but, when you sign in, you get a green paper bracelet if you have T1D and an orange bracelet for those who do not have T1D. Isa remembered this from the previous year and it amazed me that she remembered this. Then Isa showed the little girl her OmniPod insulin pod.

When you go somewhere with children you have to take extra clothes, snacks, diapers or Pull-Ups, if needed. When your child has T1D you also need to bring glucose tablets, juice boxes, insulin, a glucometer and glucagon (an injection in case the blood sugar drops too low). Greg and Kristina checked Isabella’s glucose level frequently throughout the day. While we were waiting for the shuttle to take us back to the hotel, the kids were running around and all of a sudden, Isa was just standing there and said she was tired. Greg immediately checked her glucose level and it was in the low 50s so they gave her a juice box to bring it back up. This made me realize that she needs to be checked frequently…and it is a big responsibility.

At the conference I attended a number of sessions for grandparents and learned a lot. Even though I am a retired nurse, I didn’t know a lot about T1D and how to handle the highs and lows since so much has changed with the use of pumps and continuous glucose monitors(CGM). You really need to be on top of things and recognize the symptoms of low blood sugar.

I have also been very concerned about the complications of diabetes and worried for my beautiful granddaughter but ,after attending one session, I was relieved to learn that long-term complications usually only occur if the blood sugar has been high(250-300 or more) for an extended period of time. In fact, one presenter has had diabetes for 55 years and is doing fine.

An interesting statistic is that 15,000 children per year are diagnosed with T1D. A doctor at the Diabetes Research Institute (DRI) in Miami, Dr. Chris Fraker, has found a correlation between certain viruses and T1D and hopes that one day if they can find a way to stop the viruses from destroying the islet cells in the pancreas which produce insulin, then diabetes will be cured.

Many who attended the conference have been coming for years and have developed friendships. It was so great to see the older kids interact with Isa and when Isa saw someone with a green bracelet, she wanted to meet them and show them her insulin pump or the Dexcom CGM she just stared using. 

We heard from athletes with T 1D who have done amazing things like competed in NASCAR and Indy car races (Ryan Reed and Charlie Kimball), doing triathlons (Jay Hewitt), and one young man who is running four marathons per week for nine months across Canada (Sebastian Sasseville) and they are an inspiration to the young people with T1D and show them that they can do anything they set their sights on.

It was a wonderful week and one that I will always remember. 

-Darlene

A Reflection on Linens

 

Scarred fingertips: the shared badge of those with T1D...even at age 3.

Scarred fingertips: The badge Isabella shares with others with Type 1 Diabetes.

I pull the matching pink quilts out of the dryer and head upstairs to do what I always tell Greg is my least favorite house-cleaning task: changing sheets. Before dropping off each quilt in the girl’s rooms I hold them up to determine whose is whose. Two years ago these quilts were identical in every way.

But today they are different.

One still has the bright pink glow that got me to succumb to purchasing a non-sale item from Pottery Barn Kids.

The other is faded from too-frequent washings.

One is always placed on the bed with the corner tags tickling the footboard.

The other gets rotated each time so as to distribute evenly the tiny stains of blood drops that, despite our best efforts to wipe clean little fingers after middle-of-the-night blood sugar checks, have accumulated over the past year and a half.

And so I place the quilts on the girls beds…and continue my dislike of changing sheets.

Because today they are different.

Cheers to Changing the World (and linens)~
Kristina