Archives for September 2013

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

Monkeys Always Make Things Easier to Explain

Coco ReadingImagine trying to explain Type 1 Diabetes to a 3-year-old. Now imagine trying to explain it to a whole class of 3-year-olds.  Sounds like a challenge, right?  Well, challenge accepted!

For weeks I’ve fielded questions from Isabella’s curious classmates as I checked her blood sugar and gave her insulin shots.  With Isabella starting on her OmniPod pump, I was thrilled that her teacher let me come in and read two books to her class about a new Disney character with T1D: Coco the Monkey. Not only does Coco have diabetes, she also wears a pump…just like our Isa!

The books follow Coco as she begins school and as she prepares to attend Goofy’s birthday bash.  I learned during our book reading  that 3-year-olds have very selective hearing (you’d think I’d be VERY familiar with this already) as the kids yelled out things like “My birthday’s next week, too!” and “I met Pluto this summer!”  Regardless, the kids did great and I loved seeing how proud Isa was to show off her pump to her friends.

If you are looking for a way to “explain” your child’s type 1 diabetes or their insulin pump to young classmates or friends, I highly recommend you check out these books.  Though not available for purchase, you can ask your child’s doctor for copies.  More info about the Disney partnership with Lilly can be found here: http://spoonful.com/type1.

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

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

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.

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