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!

 

 

 

 

 

 

Dear Isabella…the letter I never wrote you.

c792cfe57f2fa8d6bed8d13b0062dfd5Shortly before our kids were born I decided I would document their life via letters written each year by me.  I think letter-writing is truly a lost art and those who know me well may know that I succumb to new technology kicking and screaming (ok, maybe not kicking and screaming, but definitely whining). I would love if my kids pick up a pen and paper some day and ask for stamp so they can mail a letter to their grandparents or a friend.  I can assure you that no matter what happens between now and their arrival at adulthood, my letters will always be on paper and include full sentences:)

I still haven’t decided when I’ll hand the letters over to them but I know it won’t be until they will really appreciate them…like laugh, cry and hug me kind of appreciation.  If this happens at 18, great.  Or maybe it won’t be until they graduate from college or get married.  What I do know is that, given their apparent inability to keep secrets from one another, the big reveal will probably happen all together.

I started my letter-writing the night before the trio was born.  I laid in bed and thought about what I imagined each of them would be like based on their personalities while holed up in my giant belly.  I don’t remember what I wrote (check back with me in at least 15 years) but I remember trying to picture them reading the letters.  I hoped that these would provide them with memories before theirs had formed and, as they get older, reminders of accomplishments, aspirations, family vacations, and first loves & heart breaks.

Last year I sat in a coffee shop in Mexico City in hopes that my emotions while writing their annual letters would be contained since I was in a public setting. I was wrong.  I wrote to Max about his bout with Scarlet Fever and his newfound love of all-things Toy Story.  I told him he’d become quite the ladies man, even at age 2, charming ladies in both English and Spanish while batting his baby blues.

The tears began to flow as I shared with Mia my fears about her delayed speech and hope that she never lets anyone dampen her amazing spirit. I told her that we are pretty sure she’ll be our hippy child spinning circles shoeless in a field of flowers, and singing a song she’s composed on the spot.

And that’s where my letters from last year stop.  Two letters, three kids.

I know that when Isabella gets her stack of letters she may notice she’s one short compared with her siblings…that one year is missing. The truth is that I tried.  I tried for 12 months to write her letter.  I’ve watched as “Write Isa’s Letter” has slowly moved down my electronic list of “To Do’s” for the past year, occupying the bottom slot for many months.

Today I finally deleted it.

The kids celebrated their 3rd birthday yesterday and, the truth is, I don’t want to write a letter filled with made up memories beginning from what is now almost 2 years ago. My mind is filled with fresh new ones from this past year like making friends from around the world, potty training (I didn’t say they were pretty memories), our move to Ohio, Disney…those are the things I want to write about.  Knowing Isabella I am sure she might be somewhat disappointed that she doesn’t have documented memories of her 2nd year of life like her siblings will, so I decided I would write a summarized version of what I should have written last year:

——–

Dear Isabella,

You are spunky, sweet, and this year you were diagnosed with type 1 diabetes.  Don’t ever let this define you. You are not what has happened to you but who you choose to become…and you are off to a pretty amazing start already.

Love,
Mom

——-

Cheers to changing the world,
Kristina

It’s About More Than Us…

05.08.13-Daily-Inspirational-Quotes-as-ifYesterday we were excited to see Isabella’s story on the front page of our local newspaper, the Nordonia News Leader. We’ve been blessed to have had our story shared via several media outlets over the past few weeks and are grateful for the many family and friends who’ve supported us as we move into our second year of life with type 1 diabetes.

However, no matter how much exposure our story gets, or how many times Isabella’s adorable face is featured in an article or website, the truth is that she is just one of hundreds of thousands of people affected by this disease.  JDRF estimates that the rate of T1D in children under 14 will continue to increase by 3% each year.  Though more and more children will continue to be diagnosed,  two things remain the same:

1) There is no defined cause and

2) There is no cure.

 

After our story ran in the newspaper yesterday I received the following message from a local mom:

“Hello, I just read your inspiring story about Isabella. Thank you for raising awareness about this condition. My son is also a type 1 diabetic. It’s amazing how far he has come with this over the years. When my son was first diagnosed there were 16 children in our district with this condition.We have come a long way since then. I know how you feel. I really do. I’m a single Mom so many days can be hard. I thought my son’s condition would limit him but I have been so wrong. Last year he was on the football team and in band. Your daughter is beautiful. I so hope and pray for a cure soon.Thank you for sharing your story. It really makes people also feel like they are not alone.”

And this, friends, is why we are doing what we are doing.

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!

 

 

 

 

 

 

 

 

 

 

 

 

balloons1

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!

maeve balloon launchballoon launch2 balloon launch1 balloon launch