Mom shares her journey coming to terms with her son’s diabetes diagnosis — with lessons (and a few pro tips) for parents of newly diagnosed children.
I remember very clearly the day that my son Cooper was diagnosed with Type 1 diabetes. I was sitting with my husband and Cooper in the emergency department waiting to see the endocrinologist. As we were waiting, the nurse checked his one-hour blood sugar from his glucose test, read me that result plus what his A1C level was (an A1C test is a blood test that reflects your average blood sugar levels over the past three months) and I knew what that meant. I am a nurse myself, but nothing could have prepared me for the overwhelming feeling of doom that came next. I immediately starting bawling.
The initial shock of Type 1 diabetes diagnosis
Not long after, Kupper Wintergerst, M.D., director of the Wendy Novak Diabetes Center and division chief of pediatric endocrinology for the University of Louisville School of Medicine, confirmed what I already knew: Cooper had Type 1 diabetes.
I had to keep myself together because I needed to have a focused mind to prepare myself for the education that was about to occur. My son’s life depended on me knowing what to do. I cried many times at the hospital, making sure that Cooper didn’t see me. I needed to make sure that he knew that he did nothing wrong to cause this disease.
My head ached from all of the new information being poured into it — counting carbohydrates, calculating insulin doses, persuading Cooper to have his finger poked and to get an injection. My shoulders felt so very heavy, and there was a huge knot in my stomach. Life as we knew it was over.
The first few days and weeks at home weren’t much different. I read every food label we had in our pantry and fridge. I gathered up all of the measuring cups and measuring spoons and a calculator to have handy. I constantly kept an eye on Cooper to see if I noticed any signs of high or low blood sugar.
This mindset consumed my every thought of every day. Just when I would stop thinking about it for a moment, someone would call or ask about how things were going, or they would have questions. Most of the time I’d answer those questions, but sometimes I just didn’t have the energy. I rarely would leave Cooper alone for the fear of what could happen. Frustration overwhelmed me. If I was doing everything right then why was his blood sugar not OK?
Each week that passed got a little bit easier and more routine — remembering how many carbs were in a peanut butter and jelly sandwich without actually having to calculate it. We started a list of foods that Cooper frequently ate with the portion and carb count next to it. I learned how to eyeball portions instead of constantly measuring it out.
Coming to terms with the new normal with Type 1 diabetes
Fear had lessened, but I never put my guard down. I was coming to terms with the fact that Type 1 diabetes is not black or white. Cooper could eat and play today and his sugar be great, and tomorrow he could eat and play the exact way he did the day before, and his sugar would not be so great. Counting carbs, checking blood sugar and administering insulin are the easy part. The hard part is realizing that hormones, activity, emotions, illness, sweat, cold — all have effects on blood sugar. That is the most frustrating part for me and still is to this day, but I’ve come to terms with that fact and have realized that I can only control so much. Even when I’m told I’m doing everything right, it still doesn’t feel like it sometimes.
It’s been two years since Cooper’s diagnosis. Having the Dexcom continuous glucose monitoring (CGM) system and Omnipod insulin pump have been huge game changers. More freedom, less worry. Diabetes doesn’t consume our home anymore. It’s just part of our lives now. What keeps me going every single day is knowing that “it could always be worse” and “hopefully with him being diagnosed at age 4, he will not remember life before diabetes and he will know no difference.”
Wendy Novak Diabetes Center
Combining specialists from Norton Children’s and the University of Louisville, the Wendy Novak Diabetes Center works to provide comprehensive, kid-friendly care for your child.
Tips for the parents of newly diagnosed Type 1 diabetes children
If your child has just been diagnosed with Type 1 diabetes, I know how you’re feeling. Here are five things to keep in mind:
- It will get easier. I promise.
- There’s a lot of support. Reach out on social media, and you will be surprised at how many people have Type 1 or have a child with Type 1. They will help you. I found three people I went to high school with who weren’t my friends back then, but they have been great support for me. I hope I have been for them also.
- Ignoring this disease is not an option. You have to tackle it head on.
- Diabetes doesn’t take a day off or take a vacation. It’s every single meal, every single day, no matter what.
- Keep a notebook for logging blood sugar, food and insulin doses so you can see what is working and what is not. Plus, you will always have questions. Write them down so you can ask them. Your brain will feel like mush on some days, so you won’t remember everything.
Here are some other tips I found helpful:
- Make a diabetes supply area. Mine is in my kitchen. There are two cabinets full of supplies. I also have small plastic drawers sitting on the counter with the frequently used supplies and emergency supplies (glucagon, glucose tabs, Skittles and phone numbers).
- Use a marker to write on food containers how many carbs for how many pieces. That way you’re not constantly having to do math.
- Make snack bags using zip-close baggies, and write the carb count on the baggie. This makes snacks quick and easy.
- As previously mentioned, make a list of foods, portion size and carb count and keep that list handy.
- MyFitnessPal app is free and has almost every food and restaurant food listed to figure out the carbs.
- Lunch boxes work great for carrying all of the daily supplies that must go where your child goes.