What I absolutely love about the diabetic online community is that it consists of more than just diabetics. Parents, friends, and family members of type 1’s scatter the online space yearning to connect with others about how to raise, support, and love their type 1 counterparts.
One of the most common types of messages I receive is those of parents who are navigating the world of raising a newly diagnosed t1d child. They have questions surrounding the in’s and out’s of everyday life, they look for confirmation of doing the right thing, and above all just want to make sure they are supplying their child with the support and love they need to live a happy and healthy life with type 1.
Of course, as a type 1 diabetic for 16 years, I can help answer their questions to some capacity. But I am not a mother, and I haven’t raised a child (besides my pug but she’s more of an alien than a child), let alone a child with a chronic illness.
In the celebration of Mother’s Day, I thought I would virtually sit down with my mom to ask about what it was like to raise a type 1 diabetic child. Being diagnosed at age 10, I heavily relied on my parent’s guidance to provide the tools I needed to learn how to take care of myself and my diabetes as I went on to become a responsible adult. I hope her words can help comfort those looking for insight into how to do the same for their little ones.
here are my mother’s first reactions, challenges, and tips & tricks to raising a type 1 diabetic child
Do you remember your first thoughts/fears when being told I have type 1 diabetes? What were they?
“Our first thoughts were panic and worry for you. We were worried, because we, at first, didn’t know what you had. I thought it might be diabetes, as you had been extra thirsty and you felt nauseous and faint. I double-checked with our cousin doctors, then took you to your regular doctor, who then sent us to the emergency room. We were worried about whether we would be able to count carbs correctly and scared that we would give you too much or too little insulin. We were worried about how you would deal with having to have your finger pricked 6 times a day and how you would deal with shots. We felt overwhelmed trying to remember details – the carb counting, the insulin measuring, the food allotment, the dealing with the schools, the doctors, etc.”
What were the biggest challenges you faced adjusting to life with a diabetic child?
“There were the usual ones of measuring food, counting carbohydrates, and being on a schedule for food and insulin. I think it was more of a challenge to educate family and friends on what you could eat and when and why it was important. It was a bit more difficult when family members would go against our set meal times and feed your cousins at times when you couldn’t eat with them. We also had to educate the school district about diabetes and how to care for it. Some teachers got it, others didn’t. It was also extremely important for us to make you feel like a regular kid, even though you had a disease. We tried to keep you doing the things you loved and not make you feel different. Sometimes it was a bit hard to keep you active and balance the sugars.”
What were some challenges that got easier as I got older?
“The challenges that got easier as you got older were when you
started counting carbs and figuring out your own insulin needs. I think you started giving yourself shots a couple of years after you were diagnosed. I think it was after camp. Diabetes camp was an amazing shift for you in accepting your diabetes. You had a terrible time at first, but after a couple of days, you loved it (though you weren’t going to admit it!).
Another challenge that really waited until college for you to overcome, was trying new things. The year after being diagnosed, you were afraid to do anything. Camp helped somewhat, Cheerleading in middle school helped with your confidence in being able to do physical activity without getting low blood sugar. But college was a BIG adventure! You still weren’t great at counting your carbs (despite all those little carb books) until you got your Dexcom.”
Did you find any tips or tricks that helped raise a type 1 diabetic child?
“Here are a few things i’ve learned:
- Patience and organization are key. You have to be very, very organized to remember all the snacks, needles, testing strips, insulin, etc. that is necessary to bring wherever you go.
- When someone has diabetes, no matter for how long they have had it, and how good they may be at measuring carbs and insulin, there are going to be days when, no matter what you do, you can’t get your numbers to even out. It may be stress, it may be your period, it may be weird foods. Who knows? I know people who have taken great care of their diabetes for 50 years and still have some days when nothing works. Remember to not beat yourself up over it.
- Try not to embarrass your child by freaking out when restaurant servers don’t bring food in a timely manner. (haha!)
- Live life as normal as possible and reassure your child that diabetes shouldn’t stop them from trying new things.
- If possible, encourage your child to hang out with other children with diabetes. Diabetes camp was the best thing we ever tried. It gave you confidence and independence and made you feel accepted and normal. If your child can’t go to camp, look into events with your local Diabetes chapters.”
What did you find was the most effective strategy for monitoring carbohydrates/snacks when I was playing with friends?
“The best way to monitor snacks when playing with friends was either to supply the snacks or educate the parent and child on what the child could have. And then hope for the best…..”
If the technology were available back then, would you have put me on a CGM?
“I love that you have a Dexcom now because it has definitely allowed you to monitor your diabetes better. However, if you were using a continuous glucose monitor as a child, I don’t think you would be able to detect changes in your body as accurately yourself if it ever should fail. I believe that because you got to know your body and understand changes happening without the additional technology, you accurately notice your low blood sugar or high blood sugar changes when you aren’t using your CGM. But who knows if I would have thought about that outcome if we were presented with the CGM option at that time.”
What skills/lessons did raising a T1D child teach you?
“I guess the biggest lesson I learned from having a diabetic child was to have patience, not to take what they said personally, and to look for carbohydrates and serving size!”
What is one piece of advice you would give a mother of a newly diagnosed type 1 diabetic child?
“Love your kid, and always let them know, but don’t smother them. Let them become independent and take control of their diabetes.”
Thank you for reading! I hope you enjoyed this conversation I had with my mama and have a wonderful Mother’s Day weekend!