I’ve been busy this spring planning a JDRF Kids Walk to Cure Diabetes in my local school system. A couple years ago when my child was diagnosed with Type 1 Diabetes, the learning curve was overwhelming. Even though I’d grown up with a friend who had Type 1, I‘d had no idea how complicated and scary the disease was. Now that my child deals with this disease, along with eleven other kids in our school system, it’s important that my community understands what Type 1 Diabetes entails.
My goals with organizing the walk were 1. to empower the T1D kids in our school to lead a campaign to raise money for research. 2. to educate the parents, teachers, and classmates who interact with these children on a daily basis and 3. to teach parents about warning signs as many times doctors overlook the symptoms, which can lead to dangerous consequences.
As a result, I have been working on a personal letter to send home to parents. Below is an excerpt from that letter: What Kids With T1D Want You To Know.
- They get frustrated when they miss class, lunch, or recess due to a low blood sugar or pump issues. Sometimes they are sad to miss a story that their teacher read aloud while they were in the nurse’s office.
- They don’t feel well when their blood sugar is too high, too low, or fluctuating quickly. Symptoms include dizziness, headache, stomachache, shakiness, mood swings, extreme hunger, difficulty concentrating, or feeling hyper. They can’t always eat what or when they want, depending on their blood sugar level, and have learned the importance of speaking up if they feel low – failing to consume quick-acting sugar such as juice when they are low could result in passing out.
- They get tired of pricking their fingers – which may be as much as 70-80 times per week. Some of them are known to clench their fists and hide their hands under their pillow when they are sleeping and an overnight finger prick is needed.
- Sometimes it hurts to have shots or to pull out their insulin pump site. Students on injections typically have 28-56 shots per week, and those using a pump must change their pump site 2-3 times per week. In addition, those using a CGM (continuous glucose monitor) have a sensor inserted on their skin once every 7 days.
- They get tired of counting carbohydrates for every food item that enters their mouth. It doesn’t matter whether it is fruit, whole wheat bread, milk, or cake at a birthday party – all the carbs need to be added up as it impacts the insulin dose. And unfortunately, due to the imperfections of insulin treatment, even if the food is weighed and carbs are counted precisely, blood sugars still often go high or low. Blood sugar is also affected by time of day, exercise, stress, growth spurts, viruses, changes to the everyday routine, excitement, heat, and humidity, making management even more complicated.
- They didn’t cause this disease by eating too much sugar – their pancreas just stopped working properly. T1D is an autoimmune disease. In fact, many kids with T1D have an additional autoimmune disease also such as Celiac Disease or hypothyroidism. And as long as their parents say it’s okay and the carbs are accounted for, they can have a special treat – sugar-free candy or sugar-free baked goods are no healthier for them and can cause a stomachache due to the ingredients.
- Kids with T1D can do absolutely anything that kids without a chronic disease can do, including playing sports. However, it requires lots more work as managing blood sugars is a 24/7 job. T1D hasn’t stopped musicians Nick Jonas and Bret Michaels, NASCAR driver Ryan Reed, or Olympic skier Kris Freeman, to name a few.
I’ll do a follow-up post in June sharing the results of the walk and some warning signs of T1D. In the meantime, I wanted to share my new cover for my psychic thriller Dark Before Dawn (Young Ladies of Mystery Book 3.) Dawn’s psychic abilities lead her to befriend two girls who share her secret talents-but when she discovers that her new friends have dark intentions, she must make an impossible choice.
Although the book has nothing to do with diabetes, the title is ironic as I sit here focusing on this JDRF walk. Those first months after diagnosis two and a half years ago were dark, dark days. I was devastated, overwhelmed, and angry. But now I can tell parents of newly diagnosed children that it will get better as long as you continue to let the shine through your lives. Yes, this disease is a 24/7 challenge, but you can find a way to balance it into your life and gain some control. Stay positive, stay informed on the latest advances, find the right endocrinologist (which might take a little moving around), and connect with other caregivers. Maybe someday you’ll even want to organize an event such as a JDRF Kids Walk.
If you’re a parent of a child with T1D, hang in there – and if you’re not, please read the above bullet points as you never know when you’ll meet one of these strong, tough T1D warriors who might need your support.
Stacy Juba loves to write about Characters at a Crossroads: individuals who are finding themselves and getting on the right life path after overcoming obstacles. Her goals are to entertain readers of all ages as well as inspire them through her mystery, romance and contemporary fiction books for adults, teens and children. She has written about ice hockey, sibling rivalry and sportsmanship, teen psychics, U.S. flag etiquette for kids, and determined women sleuths solving mysteries. Her latest novel is Fooling Around With Cinderella, the first in the Storybook Valley chick lit sweet romance series.
Stacy is always happy to hear from readers