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

Comments

  1. darlene owen says:

    You express things so well. I know this waiting must be hard and hopefully the tests will come back negatve. However if any of them are pisitive, after the tears, you will handle it because you are strong and you will do everything you can to assure that your children’s lives are the best possible. Also know that you have your family to support you as much as we can. You and Greg are amazing parents.

  2. Carol Denzinger says:

    Tissues – yes, your words call for them. As Darlene says, you have a way with putting words to paper allowing you to express things that many people only feel. However, what I find most touching is your ability to look at the bigger picture, to broaden your focus beyond the boundaries of your own family and live in a way that includes people you will never meet but whose lives your actions will impact. You and Greg are wonderful role models for your children and your family is a great role model for all of us.

  3. Thank you, Carol!

  4. Jheri Orantas says:

    I met your beautiful family at the conference a few weeks ago, I share the same birthday with your babies. I am a mom of a T1 daughter (diagnosed 45 years ago and also Grandma to her T1 diagnosed 2 years ago. Every single day begins and ends with prayers for a cure .I am so grateful for the advances that have taken place over the years but that is not enough. I join you and so many other moms (and grandmas) when we can see our wonderful kids experience the freedom of having nothing attached or poking their bodies.

  5. It must have been a very difficult decision to make, to participate after all. Thanks for doing this… it’s so important, and it means a lot for many people you’ll never meet.

  6. I saw your beautiful children at FFL but I don’t think you and I have had much of chance to connect.
    With that being said, I want to reach through my computer and give you a big hug.
    Xoxo

  7. Thank you, Kelly! Hugs right back:)

  8. My husband and I both were checked, but when we were at a screening we decided not to check our other child just yet. It’s a difficult decision for sure. Good luck.

Speak Your Mind

*