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

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

 

Silver Linings…

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

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

But I was wrong.

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

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

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

But we were wrong.

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

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

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

Cheers to Changing the World~
Kristina

“But I’m not sick.”

Extraordinary DestinyThis evening while we were putting her to bed, Isabella asked why we were going running with her Aunt Shelly tomorrow morning. We told her that we were running a 5K in the Susan G. Komen Race for the Cure to support her grandmother who has been battling breast cancer for the past 9 months. We told her in simple, but clear and direct, terms that grandma had breast cancer and had been sick, but is much better now. We then said that we were going to do a walk for her next weekend. Isabella was listening very closely…then seemed a bit concerned and said matter-of-factly, “Mommy, but I’m not sick.”

While Isabella does not look sick and certainly doesn’t act sick most days…she is literally fighting for her life, every minute of every day. While she looks and acts like a perfectly healthy three year old little girl, the reality is that Isabella needs precise amounts of insulin to survive since her body does not produce any of its own. If she eats too many carbs or doesn’t get enough insulin she could go into a coma. If she doesn’t eat enough carbs or has too much insulin her blood sugar could drop to life-threatening levels. Every day is a constant battle for her life.

At her age, Isabella doesn’t fully understand the severity of her type 1 diabetes and for now the responsibility of managing her disease falls fully on us. We often go to bed wondering if tonight is the night that we will find her unconscious and have to quickly inject her with life-saving medicine and then rush her to the ER (fortunately, we have not experienced this yet…but it is far too common for parents of small children with T1D). We check her blood most nights at 3AM (one of ~10 finger pricks each day) to ensure her glucose hasn’t plummeted or skyrocketed to dangerous levels. We can’t remember the last conversation that we had between us in which we did not talk about glucose levels, carb counts, or insulin bolus amounts.

We are in awe of how Isabella handles everything. In the past 12 months she has gone through more than any child her age should have to experience. Her strength amazes us. Isabella truly inspires us each and every day. And it pains us to think that our little girl will have to live with this disease for the rest of her life. This is why we do what we can do to raise awareness and raise funds towards research and ultimately a cure for type 1 diabetes. But we can’t do it alone….we need your help!

Thank you SO much to those of you who have already donated to support team Inspired by Isabella in the upcoming JDRF Northeast Ohio Walk to Cure Diabetes! With your help, we have raised nearly $5,500 for this year’s walk (bringing our total fundraising since Isabella’s diagnosis to over $15,000!)! BUT…we are still short of our $7,000 fundraising goal for this year!

If you have not yet made a donation, please help us achieve our goal by making a donation of any amount using the link below.  With your support, we can change the world!

http://www2.jdrf.org/site/TR?team_id=83886&fr_id=2368&pg=team

Sometimes, you just need a good cry…

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

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

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

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

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

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

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

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

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

Cheers to Changing the World,
Kristina

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

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!

photo (8)

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