I have learned a few things along the way to Hour 56,328 that might be helpful for other parents of children with diabetes, be they “experts” themselves or white-knuckled beginners:
1. Managing diabetes is like chasing a rainbow. Once you think you know exactly what you are doing, the elusive rainbow disappears. It may reappear at any time. It may not reappear for months.
I remember at an early endocrinologist appointment being so disappointed when I had learned that my son’s A1C score had increased by 0.5 points. I deflated at the increase at the exact time the nurse inflated over the total score. We both looked at each other, confused in our reactions. She chuckled and asked if I was a Type A personality. I said I was.
“Oh honey, parenting this disease is not an easy job for a Type A personality. You’re going to have to let that go,” she said.
At the time, it made me mad that she was willing to accept my child’s A1C as good enough. Well, after 56,328 hours, I can say I count myself firmly among Type B personalities when it comes to his diabetes.
2. Be kind to yourself and to your child. Your child’s numbers are going to fluctuate. Yes, you may sometimes feel that high and low blood sugars are your fault or the fault of your child. Sure, you may have let him have three pieces of pizza, a cupcake and some Laffy Taffy at a party. You may even have miscounted the carbs for it. He may have snuck something and not counted it. He may have forgotten to dose or check himself.
However, for the most part diabetes runs the show. My rule of thumb is that I try hard to judge our care as a collective whole. If I see a pattern, I learn from it, I talk it out with my son or myself, and I adjust. Then we move on, kindly.
3. Attract more bees with honey. After a couple of social missteps, I soon realized that my son’s caregivers needed to be nurtured, not bullied. If they messed up, I had to use it as a training opportunity. It’s sometimes frustrating to regroup and be nice when you think you have already explained something 1,000 times and you thought it was understood, but doing T1D care is as difficult for caregivers as it is for us. Be as kind as you can be to those trying to help.
4. Be a mama bear. On the opposite end of the spectrum, if your child is in danger at school, at daycare, with their medical professionals, or anywhere else, feel free to fight with everything you have.
5. Get to the root of the problem. One day when I reminded my son about getting his blood sugar checked and dosed at lunch time, he said, “Mom, when they check me in the office, sometimes it takes them a lot of time because they get busy. Then I miss recess, or if I do get out there all of my friends have already found friends to play with.”
I was so busy thinking of his schedule and the timing of his insulin, I forgot he was a little boy with a life that has nothing to do with diabetes. We decided to have the school paraprofessional check and dose him in the hallway near the lunchroom. Now he gets to play with everyone.
To read Part 2 of this story, go to http://insulinnation.com/living/5-more-ways-stay-sane-d-parent/.
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