What Kids With Type 1 Diabetes Want You To Know: A Mother’s Journey #T1D #mgtab #Diabetes

​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.

Kids With Type 1 Diabetes 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.

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About Stacy Juba

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

8 Replies to “What Kids With Type 1 Diabetes Want You To Know: A Mother’s Journey #T1D #mgtab #Diabetes”

  1. Your post brought tears, Stacy. While it does get easier as both parent and child learn the signs, there’s always that fear in the back of your mind that you might sleep past a check, or the EA at school might miss a symptom, or they’ll get sick and end up in the hospital.
    I just had my grandson for two weeks over spring break and it gave me a whole new perspective on what you live with every day. I think the scariest thing is how fast it can change. The one day we tested before mealtime and two hours later he’d dropped dangerously low-even with an extended bolus!
    Then there’s the night I slept past the 3 am check… I still feel sick over that.
    I admire you, my daughter, and all the other moms and dads who deal with this disease and pray for a cure to come soon {{hugs}}

    • I’ve slept through those 3 am checks too, Jacquie. I think everyone does sometimes. I now have 2 portable alarm clocks and also set multiple alarms on my iPod and Kindle Fire hoping I will hear at least a couple of them. We just do the best we can.

      Those extended boluses can be unpredictable. I like using them for certain foods and for a high carb meal, but it’s an educated guess and luck as to whether it works the way you hope it will. Mac and cheese is the worst thing in our house as it always seem to cause a low and then a high no matter how we handle the bolus. It’s worse for us than ice cream or cake, but if they love it, it’s hard to totally deprive them of things. We have very supportive grandparents also, so I can tell you how important that is – your daughter is lucky to have you! Hugs back!

  2. My heart goes out to both of you and everyone who either has diabetes or family members with diabetes. I, too, grew up with a friend who had this disease and had no idea how difficult it was, and still is. With the new pumps and other ways of managing the disease, I truly thought it had become much easier. Thanks for an eye-opener.

    • Thanks so much for reading, Pat. In some ways it has become a lot easier – the Dexcom continuous glucose monitor has been a real game-changer for us and provides more peace of mind. Technology has come a long way. But blood sugar is still so hard to regulate even with pumps. There is a lot of research going on now though so I’m optimistic that things will keep improving.

  3. Bless you, Stacy. I hope everyone reads your post and becomes more aware of T1D. Too many people think you just take an insulin shot every day, and that’s the end of it. So thank you for sharing your knowledge.

    You see, one of my childhood friends was diagnosed at age 14. By the time he was middle-aged, his body was ravaged. He was on the kidney transplant list, but was end stage before his name ever came up.

    • Thanks for reading, Joan. So sorry to hear about your friend. Despite the imperfections of insulin treatment, at least nowadays it is easier to improve blood sugars due to all the advances. It’s still hard work, but we’re no longer flying blind – the monitors and devices let us know what’s going on so highs can be corrected much more quickly. That reduces the chances of long term complications. But T1Ds have to be vigilant and take care of themselves, because of those risks. I think we parents and grandparents tend to be hard on ourselves if the A1C isn’t where we wanted it as we feel a responsibility to do everything we can to minimize those risks and ultimately teach the kids to take excellent care of themselves when they grow up.

  4. As a mom of a totally healthy child, I never knew the trauma you live with. Just the thought of the agony you and your family have suffered makes me have a whole different perspective on this illness.I’m thankful it’s a manageable situation but I’m still sending my wholehearted admiration for extra care you need to give to keep your child safe.
    xo
    Mimi

  5. Thanks, Mimi. I am very grateful it is a manageable situation also. Sometimes we get frustrated, but then you hear of kids going through illnesses that are not manageable and my heart goes out to those families. I wish all kids could be totally healthy and have carefree childhoods.

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