Her Disease Keeps Us Up at Night. It Can Also Help Us Change the World.

Dear Type 1 Diabetes,

You came into our life quickly and unexpectedly a few years ago when Isabella, our then-2-year-old daughter, was rushed to the hospital. As you know, she spent four days in the hospital getting poked and prodded and pumped full of insulin. My wife and I sat there with tears in our eyes, our hearts aching with sadness and our minds filled worry of what our future would look like once we left that hospital room.

Before that trip to the hospital, we knew absolutely nothing about you. We also didn’t know that you had probably been around for a while. The signs we noticed in the weeks leading up to that life-changing hospital visit — extreme thirst, constant urination, weight loss — were surely completely normal for a growing and healthy 2-year-old girl. But we learned that those symptoms were the result of type 1 diabetes trying to destroy our daughter’s pancreas.

We were scared and, truthfully, we despised your presence in our daughter’s life. We wanted to completely erase our memories of you. How could you do this to our daughter? Why us? Why now?

We realized those questions would unfortunately never be answered. We immediately made a very conscious decision to accept our new reality. We made that decision while sitting right there in that dimly lit hospital room, which was filled with beeping machines, nurses and doctors. As hard as it was, we accepted that you would now be around every minute of every day for the rest of our daughter’s life. And we also accepted that there was nothing we could do to change that.

Letting go was not easy, but it was completely necessary. That decision meant that we had to accept that our new reality, which now included you as the sixth member of our already very busy household.

And that was the beginning of our new life with you. Our lives will never be the same. We now count every carb that Isabella eats. We prick her finger to check her blood sugar level up to 10 times per day. We’ve learned to give her precise amounts of insulin in an attempt to keep her blood glucose in the proper range… which is a constant battle that has fortunately ended in only one emergency visit to the hospital.

As much as I try not to, I spend a good portion of my time thinking about you. You are one of the very first things I think of when I wake up in the morning and usually the very last thing I think of when I go to sleep at night. I’m often awake multiple times in the middle of the night due to high or low glucose levels. I actually can’t remember the last night I slept through the entire night.

My wife and I have learned to operate on very little sleep, although she has certainly mastered this skill much better than I have. The truth is, I’m extremely tired most days. As a result, my patience is low and my stress level is high most days.

It’s upsetting that my 4-year-old daughter has to be connected to all of these medical devices and throws completely out-of-character temper tantrums for no apparent reason.

It makes me both angry and sad that Isa has had to deal with so much at such a young age. And as she gets older, I am scared that other kids will make fun of her for being “different” and she’ll come home crying. I know this day will come and I hope and pray that I can say the right things to make her smile and make everything better, even if only for that one moment.

Thankfully, my family learned how to successfully deal with challenges long before you came along. And we always overcome… always. You have not won and trust me when I say that I won’t let you win.

Our lives are perfect and I wouldn’t change a thing. My family laughs and smiles every single day, even with you lurking in the shadows. We have learned to roll with the punches and adapt to whatever is thrown our way. We are extremely resilient.

I am so proud of how Isa deals with all of these obstacles and does so with a smile on her beautiful little face. I am in awe of her strength and courage. Isabella is one of the strongest and most courageous people I know. I’m so proud that she inspires others with her story (even though she may not even know it!).

When Isabella was diagnosed, we decided to accept it and let go of what we can’t change. But we also decided that we would fight for Isabella and all those living with type 1 diabetes! So, for the past two and a half years, we have done exactly that. We do everything we can to raise awareness (including sharing Isabella’s story with anyone that will listen!) and raise funds to support diabetes research. And we won’t stop.

While we still wish we never heard of you, we also want to thank you. You must have come into our life for a reason. In some strange way, you inspired us to make a difference and play a small role in changing the world.