My Daughter was Diagnosed with Type 1 Diabetes and My Diabetes Bubble Burst

I was diagnosed with Type 1 diabetes 30 years ago and started attending Bearskin Meadow diabetes camp a few months later. I grew up, became a pediatric diabetes nurse, and married someone I met at diabetes camp. My best friends are from camp, and our holiday parties and weekends away are filled with other adults with Type 1 diabetes. I talk about diabetes all day long at work, so I don’t spend much time talking about it with my husband. He knows how hard it is and I prefer to just deal with it and move on.

This strategy has worked well for me. I don’t follow special diets, I eat carbs, and I exercise regularly. Frustrating things happen, but I try to stay positive and deal and move forward. I have always viewed diabetes as a part of my life that is annoying, but not limiting. It has provided me with a community, job opportunities, and empathy. All was going according to plan until one year ago, when our oldest daughter was diagnosed with Type 1 diabetes.

Now, I am no longer just a person with diabetes or a diabetes nurse, I am a parent of someone with Type 1 and it is a whole different ball game. As someone who lives in three worlds, a person with T1D, a healthcare provider, and a D-parent, I can say, at this point in my life, parenting someone with Type 1 diabetes is the most difficult role of all three and much harder than I ever expected.

The bubble has burst. 

Whitney tested positive for two antibodies in TrialNet, after 7 years of negative results.  We went forward with further testing and her results showed  glucose intolerance, saying she isn’t handling glucose well, but she does not have diabetes yet. We were hopeful and prepared ourselves for watching and waiting and maybe a year or so of Lantus only.  One month later, she wet the bed two nights in a row, but her blood sugar was still normal. We put a Dexcom on her and watched and waited. Within two weeks, she was on Lantus and two weeks later, she was on Humalog.  Having to explain to her that she had diabetes was heart wrenching, explaining that she would need injections was worse. My kids know diabetes, they see it at every meal, but they see it as a pump or a glance at my phone. I’ve never hidden it from them, and it has always been something I just do, like a habit, and not something I spend much time talking about (except at work).  Standing in the kitchen, giving Whitney her first injection of Lantus, her new reality began to sink in and she fainted onto the kitchen floor. That was the moment when diabetes invaded our home.

When Whitney started on insulin, I was mad. I was upset that diabetes was really happening to her. I was mad at the statistics that were not working in my favor. I was pissed off that she would have to experience a life with diabetes in it. I hated that she would have to learn what it feels to be low or high with ketones. I wanted it all to be different, and I still do. I was not interested in bringing her into the world of quarterly medical appointments, and having to explain diabetes to each teacher, and dealing with the school nurse (who turned out to be amazing). I was nervous about her being alone at a practice or an after school event and concerned about her feeling low and scared. I also worried something horrible may happen to me and I would not be able to take care of her. Whitney’s diagnosis made my diabetes more real and the guilt was front and center. Even more, I was mad at myself for being surprised that she had diabetes. In the back of my mind, I always felt like my career choice and volunteer hours were my payment to the karma patrol, to keep my kids safe from diabetes. 

I grew up in a time of Regular and NPH, two tests a day on a meter that took one minute and mandatory snack time. Recently my mom made the comment of how overwhelming the Dexcom data must be for us as parents. “At least when you were younger, we could forgot about your diabetes in between meals”. She is correct. I find myself obsessed with the Dexcom, regularly checking my watch, waking up in the middle of the night to look at my phone. Recently, we had Whitney set up on Loop, but she asked to stop because I was following her around like a puppy, making sure it was working. As a mother of three young children and at one point, all of my children were under the age of 2 (we have twins), I know exhaustion, but there is something different about diabetes exhaustion. It feels like there is an underlying layer, a foundation, of sadness and worry, beneath a concrete tower of exhaustion.  I feel like I am constantly trying to figure out the next move and am probably adjusting her basals too often.  

I am trying to fit diabetes into my daughter’s life instead of allowing it to take over. I am trying to talk to her about something besides her Dexcom data when we have a conversation, and I’m trying to let her see she does not need to be defined by diabetes. I am also trying to give my other kids the same amount of attention, but I must admit, it is hard, as diabetes just demands more time. (And I won’t even go into her celiac diagnosis…) 

Over the past year, there are many things I have learned as a parent of someone living with T1D. Managing your own diabetes is much easier, as there is less emotional attachment to your own blood glucose values. When I am high, I take insulin to bring it down. When Whitney is high, my mind goes 20 years into the future and I stress about what I did wrong and what I should do better next time. A child’s body is constantly changing and so are their insulin needs. I have had the same basal rates for years, while her body seems to need more (or less) each week.  

Most importantly, I have learned that communities and camp matter. My children have attended Bearskin Meadow diabetes camp since they were babies. They would tag along with me as I taught education and they love being in the camp environment. This past year, my husband and kids attended as a family, while I taught. During the opening circle, the hardest part for me was stating that I am now a parent of someone with diabetes. It has only been recently that I can say it out loud without a lump forming in my throat and my voice not cracking. 

 At camp, we got our daughter back. We watched her make friends with other kids wearing Dexcoms and also eating gluten free. Before camp, Whitney was mad she had diabetes, as it was only something her mom and her parents’ friends had.  At camp,  she has found her peers, just like I did. 

In recounting the past year of our lives, I am reminded that we have it easy in the world of diabetes, we have a strong family support system and a strong circle of friends. We have amazing health insurance and access to insulin and supplies. We have the latest technology and resources to the latest and greatest DIY components. I have a supportive husband who is involved, even if I take over and then complain about it. And I have my own experience as someone living with diabetes and my medical training, which helps and hinders at the same time. I am amazed when thinking back at how my own parents remained calm with my diabetes. I thank my parents  for forcing me on the bus to go to camp and encouraging me to continue life as normal while living with diabetes.

As a member of this new group of D-parents that I was hoping to never join, I now have a new understanding of how hard managing someone else’s diabetes really can be and how much emotion is in involved.  As Whitney’s one year diaversary arrives, I am constantly trying to parent her diabetes better, while trying to get some sleep. I still know it is very hard, but when I wake up at night and look at her numbers on my phone, I know I am not the only parent awake staring at a phone.  So, maybe instead of thinking of my diabetes bubble as bursting, some day, I will be able to think of it as growing. 

Erin Heiser

Erin Heiser has lived with Type 1 Diabetes for almost 30 years. She is a pediatric diabetes nurse and is passionate about access to diabetes technology for all patients who are interested. She is a firm believer in the social support found through diabetes camps and believes every family should attend camp. In her spare time, she can be found outside with her husband and three kids, either hiking, skiing or reading a great book on the beach.