458.
That was our 9-year-old daughter’s blood glucose level the night my husband and I tried to go out on a date, the night that we were going to let her grandmother babysit for the first time.
We had prepared very carefully. We fed our daughter dinner before we left, so we knew the carb count was dead on, and her blood glucose was in a good range. Grandmother did not know how to operate the pump, but everything was working well and we would only be gone for a few hours.
After an hour of troubleshooting phone calls, realizing the pump site was compromised, coaching our crying daughter to change her pod, and one dead phone battery, we called it a night and headed home. Who needs a life anyway?
Type 1 is relentless, omnipresent, and a daily stress bringer. It was particularly difficult in the first few months. Now that we are nearly two years into our journey we’ve learned some tricks to help us manage the burnout of caring for a child with Type 1:
- For us, Type 1 management is an ultimate exercise in radical acceptance of failure. We’ve sent our daughter to school without insulin, miscalculated carbs and boluses, left the house without her diabetes kit, failed to pack enough test strips for a vacation far away from home, and slept through multiple alarms. Every day we fail at something and it’s OK. Our daughter’s A1C has been in a good range so far, she is healthy and well adjusted (with, or despite, our help), and that is good enough.
- We also try to pick our battles wisely. We watch our daughter’s blood glucose like hawks when she’s active, because it can drop precipitously. On other hand, we’ve learned that she tends to stay fairly stable overnight, so we don’t get up in the wee hours to check unless something new or unusual is happening. We do rely on our trusty Dexcom to alert us to lows and highs, but occasionally we choose to leave our daughter’s BG in a low 200’s range overnight as a tradeoff for not setting the alarm so we can catch up on some sleep.
- We celebrate victories big and small. Nailing a complicated SWAG (a Scientific and Wildly Amazing Guess bolus….also known as a Scientific and Wild Ass Guess bolus) in a restaurant is worthy of a pat on the back and a fist pump. A good A1C result is cause to stop for a double-double at the In-N-Out. Surviving our daughter’s first slumber party without us deserves its own after-party. Meeting our annual deductible after ordering pump supplies in the beginning of the year is like Christmas in January.
- We say yes to offers of help and graciously accept accommodations.
- We are learning to speak up when a particular choice can make our lives easier, especially when it involves food and dining out.
- We are trying to let go and let others care for our daughter, even if they do not have a comprehensive understanding of Type 1 care.
- We are learning to trust our daughter’s skills to manage her diabetes independently with minimal supervision, and we are learning to trust our friends’ judgment and knowledge of when to get help or call us with questions.
- We are learning to let everyone else fail in the process, too. Interestingly, the more we relax about it, the better things tend to go. That radical acceptance of failure is a thing of beauty.
- We use every opportunity to get away from Type 1 diabetes. On a rare occasion it is something grand and glorious, like sending our daughter to a sleep-away diabetes camp. More often it is something small and mundane. This afternoon, my husband and I took turns escaping the house for a couple of hours while the other person tended to our sick daughter. And then there is work. Who knew that work could provide such fantastic escape from Type 1?
- Our strongest weapon against burnout is humor. We laugh at our epic failures. We make fun of how frazzled we look after a rough night and how we are growing increasingly dependent on coffee and wine. We snicker at the thought of how someone could have a coronary if they overheard us telling our daughter that she is hungry because she is high. Our daughter is following in our footsteps and is developing a fine appreciation for sarcasm and an irreverent sense of humor. If we can’t get rid of Type 1, we will find a way to use it for a good laugh.
And that is how we roll with Type 1, day in and day out.
We at Insulin Nation would like to hear from you about how your family takes Type 1 in stride. Let us know your survival mechanisms and mental hacks for keeping it together with diabetes.
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