On April 9, 2017, our lives were turned upside down. Our daughter, Kai, had just turned two on March 19. For about a week prior to April 9, she was slamming sippy cups of water, soaking through diapers, and having intense meltdowns by the end of each day.
On April 9, we learned Kai had type 1 diabetes.
Type 1 diabetes is caused by an autoimmune reaction (the body attacks itself by mistake) that destroys the cells in the pancreas that make insulin, called beta cells. This process can go on for months or years before any symptoms appear. If you have type 1 diabetes, your pancreas isn’t making insulin or is making very little.
Insulin is a hormone that enables blood sugar to enter the cells in your body where it can be used for energy. Without insulin, blood sugar can’t get into cells and builds up in the bloodstream. High blood sugar is damaging to the body and causes many of the symptoms and complications of diabetes.
When I first heard those words I very distinctly remember thinking, “She doesn’t have diabetes. That can’t be right.” I had no idea what that diagnosis even meant. But, it wouldn’t be our diagnosis. What I did know was that I was terrified. Terrified of the unknown.
From that moment on, every minute of every single day of our seemingly carefree lives would be different. Type 1 diabetes would be at the very core of all of our thoughts at all times. Yet, we still had no idea exactly what that meant.
This is what it meant… it meant that Kai would need insulin to live.
It meant we would never be able to feed our child without thinking about how many grams of carbohydrates were in the food, how much insulin to administer, the timing of her insulin being administered, her physical activity before and after she eats, and quite literally it goes on and on and on.
Type 1 diabetes would loom over us like a dark, dark cloud until we found light.
But we did find that light. That light shines ever so brightly within the tightly knit, compassionate beyond words, walls of the type 1 community.
Grit and Grace
If I’m being brutally honest, it’s a community I never wanted to be a part of. I wanted nothing to do with it. So many people reached out when Kai was first diagnosed offering to connect us with different people who lived with what we now call our new normal. I didn’t want any of it. None of it.
Today, I am that person who wants to connect with newly diagnosed families. I want to tell them I know it really sucks. Let them know they are not alone. Listen to them. Be there for them.
Three years later, I know for certain this community is one of the brightest lights in this journey. Connecting with other type-1 moms and families is absolutely life-giving.
It is indescribable to talk with a group of people who say “me too” when you share about the sleepless night you just had fighting dangerous lows with multiple juice boxes and glucose tabs. Or feeling completely defeated but knowing you have this amazing community who will lift you up and help you problem-solve. This community, the one I never wanted to be a part of, gives me life when I need it most. It’s been a completely unexpected silver lining.
Within this same community is another community of people who strive to control type 1 diabetes proactively and achieve blood sugar levels consistent of a non-diabetic person. Type 1 diabetes can feel like an out-of-control rollercoaster you cannot escape. You want to get off of it so badly. But, you don’t know how. It can feel isolating. Lonely.
Finding a new normal
The first year of our new normal we survived.
Discovering how to get off the rollercoaster and maintain close to non-diabetic levels has been beyond empowering. It’s hard but so worth it. It involves a ton of grit, trial and error, and oftentimes it feels like a whole lot more error, plus giving yourself a whole lot of grace. But every step in the right direction, no matter how small, builds our confidence. It builds our belief that we’ve got this.
I want to address some common misunderstandings surrounding type 1 diabetes. When Kai was first diagnosed, I knew nothing about type 1. Absolutely nothing. I thought someone with type 1 took insulin when they ate and that was it. Pretty simple, right? That could not be further from the truth. Like I mentioned above, there are a bazillion other things to consider when giving insulin for food.
Recently I was asked if Kai was used to not being able to have birthday cake at parties.
I get some form of this question a lot. People with type 1 diabetes can eat anything you and I can eat. Some choose to eat a low-carb diet or change their diet in some other way. We have not really changed our diets much. Kai eats cake. She eats ice cream. She eats all of the same things any 5-year-old child eats. The big difference is the amount of thought and planning that goes into dosing her insulin before she eats and after.
So, whether you’re newly diagnosed or a veteran, please know that you are not alone.
There’s a whole big community out there waiting to embrace you, help you, and be your biggest cheerleader. And no matter what part of the journey you’re on, you’ve got this. Grit and grace will get you through it. Every time. With grit and grace, you’ve got this. We’ve got this.
Hello! I’m Suzanne. Wife and mom to 5-year-old twin girls, Kai and Rowyn. I’m a former teacher and now a stay-at-home-mom-ish. I say “ish” because I mostly stay home, but I also have two side gigs – plus a very part-time job at a boutique. I love to spend time with family and friends, shop, travel, and write. You can follow me on Instagram (@suzanneleehansen) where I share more about Type 1 Diabetes, mom life, self-care, depression, and anxiety, and being a Christian. Really, all the things. I believe there’s power in sharing our stories, and I want you to know you’re not alone.
This post was originally written in 2020 and updated in 2023.