Evie Heitkamp

My T1D Story

Evie is 5, and 6 months into her T1D journey. It’s hard to tell if it has actually gotten any easier, or if we all just adjusted to our new reality. It is still hard, but apparently we make it look fun enough that our friends and family wish they had T1D. Perhaps the outward calm and normalization is part of the misguided reason I didn’t realize T1D was such a big deal before Evie was diagnosed; you all make it look easy.

I remember the first time I realized there might be a gap between my thoughts on diabetes and the reality. Around last Thanksgiving (before Evie was diagnosed), a friend and I were picking up our preschoolers. Her child has had T1D for over a year. I asked my friend how she was doing and she answered, “you know…diabetes.” I remember thinking I clearly did not know. In my mind, diabetes was a common disease that was easily managed. I was speechless by her raw honesty and realization I had no idea what she was going through. I walked away wondering what I could be missing.

My little kid is not the same innocent kid that walked into the hospital the last days of 2023. This disease has changed her worldview in deep and profound ways. I remember Evie asking multiple times when she would get better and the betrayal in her eyes when I allowed the nurses to give her shots even when she asked me for help. Eventually I became the source of her pain as I gave her shots as she begged me not to. She said things I never imagined could come out of her sweet heart. She hated God. She wanted to burn down everything that caused her pain. She was mad.

I also remember a different kind of pain when her sisters asked if we still cared for them. In our pre-pump days when we were busy counting carbs, trying to get Evie to comply with finger pricks and insulin jabs 4 times a day we often had to tell we didn’t have time for them (we never actually said that to them, but that was the message they heard). I also remember having to drive to school every day for a month to help hand over the shots to the school nurse who Evie wanted nothing to do with.

Then there were other complications that arose. Let’s just say I have dexcom on speed-dial because of how often I have to call because of failed sensors or sensors that fall – or get itched – off. Her skin has been so raw I had to find creative places to place her sensor so her tiny arms could heal in between the constant changes. Also, don’t get me started on training babysitters and family members to help take care of a 4 year old who doesn’t want anyone near her pump.

Evie eventually got her “jellybean” machine; this pump was supposed to be our answer to our problems. It immediately tried to kill her. Repeatedly. Her insulin needs were too small and the pump couldn’t give her the small doses we needed. So eventually we found a way to turn off insulin several times a day, but the constant fear of her sudden drops kept me awake all night (sometimes still does). My new year resolution to not be on my phone was obsolete. I was glued to my screen throughout the day watching her numbers. The alarms don’t always catch her drops quickly enough. We faithfully followed the “rule of 15” for a couple of months before realizing she really only needs a couple grams of carbs to normalize her (1-2 jelly beans have been our answer).

Then there were other complications that arose. Let’s just say I have dexcom on speed-dial because of how often I have to call because of failed sensors or sensors that fall – or get itched – off. Her skin has been so raw I had to find creative places to place her sensor so her tiny arms could heal in between the constant changes. Also, don’t get me started on training babysitters and family members to help take care of a 4 year old who doesn’t want anyone near her pump.

I wouldn’t wish this journey on anyone. Despite it all, we love knowing we can do hard things as a family. We are strong, and growing stronger everyday. We are especially thankful for all the miraculous “coincidences” that prepared us for Evie’s journey this year (that’s a whole different story). We are thankful to this amazing community we are now part of as well as the family and friends who have stepped up to support us. We love that Evie and her sisters talk about this openly and aren’t ashamed or embarrassed by the diagnosis. We love that we now have the occasional night where we only need to wake Evie up for one cavity inducing treat. And, we are thankful to have found the small but mighty jellybean.

“Mom, Evie has a machine that beeps and her mom brings her a jellybean. Can I get one of those?”

– Evie’s 5 year old cousin