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

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

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

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