Luke was diagnosed with diabetes during spring break (March) of 2019. Our diagnosis story couldn’t have gone any smoother, I will go into more details on that in another blog post, but I will always remember the first day that I dropped him off at school. It was the first day that he was alone with the teacher aid, who was wonderful but knew nothing about diabetes and was basically just trained on the basics with the district nurse. Don’t get me wrong as parents we were super thankful to have a teachers aid for Luke; we know many children must go with out but that still didn’t help the wave of anxiety that was rising inside me as I tried to remain calm on the outside for Luke.
I remember walking into his school with him and he was trending down. I wanted to talk to his TA to let him know the situation, but I couldn’t find him anywhere. The bell had already wrung, and Luke had PE first class. Of course, he had PE first class. I finally found his TA and as we were walking to the gym, I told him Luke was a bit low, but we had treated so he may need to test before activity. I remember saying goodbye to Luke and watching him through the swinging door as he sat down on the gym floor to listen to the PE teacher. I remember his face looking at me with a concerned look and I waved with a smile and gave him a thumbs up. He waved back and as I walked out the school door the tears started streaming down my face. I barely got back to my car before the panic attack hit. I felt like I couldn’t breathe. It felt like a garden hose was on full blast inside my chest, whipping around and I couldn’t get a hold of it to shut it off. I sat there through tears thinking how can we function like this? How will he do all the things he normally does? Will this get easier? Easier, no but it will get a little less hard.
As parents of type 1 diabetics, I know you can all relate. I thought being stressed 24/7 was my new reality and don’t get me wrong I do still have many stressful moments, but it has gotten a little less hard. Let’s break down why this is:Education and Knowledge – When Luke was first diagnosed as parents we already had experience with diabetes as Aaron, Luke's dad, is a T1D, but we still dove deep in to educating our selves. We learned how to count carbs by using tools such as food scales and apps on our phone, we listened to podcasts, shout out to the Juicebox Podcast (if you know you know), I read books, joined Facebook groups, and followed other T1D moms on Instagram. Basically, I learned as much as I could about diabetes. I believe knowledge is power and knowledge helped me feel more confident in managing Luke’s diabetes.
Technology – The Dexcom was not only a game changer but a life saver for us. Luke does not wake up during the night when he is low so when Luke was first diagnosed, we basically would test Luke every couple hours through the night to make sure he was ok. Thankfully he didn’t wake up, but it was exhausting for us. The Dexcom gave us our sleep back. I could go to bed with a sense of relief knowing the alarm was going to wake me if Luke went low. It was also a huge relief to be able to know Luke’s readings at school. The second piece of technology we would not want to go with out is his Tandem insulin pump. Luke’s A1C and his overall blood sugar levels are so much better with his pump. It’s so nice to be able to have control IQ and exercise mode. It’s also given Luke more independence as he feels way more comfortable taking insulin from his pump rather than injecting.
Communication – I feel like Luke’s diagnosis has brought us all closer as a family. I feel like he communicates more with us now, which allows us to work together to manage his diabetes more effectively. Luke knows the importance of keeping us in the loop with where he is or what he’s doing. As he gets older, I want to continue to have this open communication so he feels comfortable to come to us with questions about alcohol, sex, or anything else he will face as a young adult.
Resilience – I know this one gets thrown around a lot and to be honest it sometimes irks me because yes Luke is resilient, but I wish he never had to be. It’s true though if you go through tough moments on let’s be honest a daily basis it can and hopefully will make you more resilient. The many hard moments of diabetes and the decisions Luke has to make for himself daily has shaped him into a more resilient kid. We still help Luke a lot with his diabetes management, but he’s also become more confident, independent and handles a lot of the decisions on his own. This gradual shift of responsibility empowers him but also eases the stress on us as parents.
So, to all the newly diagnosed, to all the parents of the newly diagnosed one day it will get a little less hard. You will establish a routine and it will all become like second nature to you with a lot of speed bumps along the way, but you will navigate the speed bumps with a little more grace. Speaking of grace, remember to give yourself some because you’re doing a great job.