10 Signs You’re No Longer a T1D Newbie

When a child is diagnosed with type 1 diabetes, the onslaught of information, anxiety, and exhaustion is intense. I was fortunate to hook up with a local support group within weeks of my daughter’s diagnosis over a decade ago. Every parent there shared some version of this bit of wisdom: “It takes at least a year before you feel like you have any sort of handle on this, and some things take much longer, but you’ll get there. This will become your new normal and it won’t feel as overwhelming as it does right now.” So how do you know when you’ve gotten to that place?

  1. You don’t call the doctor or clinic about every “little” thing.

Don’t get me wrong, it’s still good to call when you need to, but for the first year or so after my daughter’s diagnosis, I could press redial on my phone at almost any time and reach our clinic. I called for every major low or high blood sugar, every illness, every tiny question about the mechanics of administering insulin, every error reading on the meter. Asking those questions was invaluable, and very slowly, I learned. I learned more about diabetes. I learned more about how my child’s body responds uniquely to specific activities, foods, and illnesses. With that knowledge came an increased ability to trust my own judgment.

  1. You’ve found somewhere else to store the butter.

Your refrigerator butter compartment is now likely full of insulin vials, so your perishable foods have been reorganized. You’ve also found somewhere to keep a three-month supply of all sorts of other necessities you never needed before. And if you’re like me, you may have found the large storage closet in the spare room to be a major selling point for your current home.

  1. You’ve dropped your child off at a birthday party—without staying.

If your child is diagnosed at a young age, this might not happen until after the days of bouncy houses and roller-rink parties. Once we were ready, sometime during fourth grade, I didn’t leave the first couple of parties with any sense of confidence or calm. Eventually, though, I had to trust that I had equipped my kid with enough skills and cell phone minutes that I could legitimately take off. I still sometimes have to stop in at the beginning or end to help with carb counts on the treats. I still sometimes experience anxiety. But I then remind myself there’s a reason every other parent started dropping their kid off and hustling away in first grade!

  1. You’ve become comfortable educating people about T1D.

Over the years, I’ve enlightened teachers, people in line at the museum, classmates and their parents, distant relatives, hospital staff, and even our excellent pediatrician about aspects of living with type 1 diabetes. Initially tongue-tied during these conversations, I’ve developed standard, simple responses for all kinds of questions and situations. These conversations can even lead to additional benefits beyond the education—like friends discussing a dinner menu with you in advance, teachers better understanding why they need to be in touch about class parties, or Nana keeping a favorite snack stocked for your visits.

  1. You’ve stopped experiencing the little jolt of excitement when a package is sitting on your doorstep.

It’s not a surprise half-birthday present or the amazing sweater you forgot you ordered. It’s test strips. Or pump supplies. I’m sorry.

  1. When the caller ID reads “school” at lunchtime, you answer with “Hi, Sweetie.”

I’ll note, though, that this habit can backfire, as it did the time it was the guidance counselor calling me with a scheduling question, not my daughter calling for dosing help. But regardless, you’ll hopefully develop a nice working relationship with the school staff. They will know you and your child, be comfortable discussing diabetes issues with you, and maybe even laugh with you rather than at you when you accidentally call the nurse Pumpkin. Having that open communication can make handling field trips, special events, and other school challenges less stressful as the years go by.

  1. You’re a carb-counting savant.

You can divide, multiply, and add snack carbs in your head, and you’ve memorized counts for your family’s most frequently consumed meals. Even more excitingly, you begin to win more games of “guess the carbs” than you lose. For years after diagnosis, restaurant meals, parties, and holiday dinners often led to out-of-range blood sugar results at our house. Then those years of practice began to pay off. There are still occasional misfires, which I’ll blame on mystery ingredients added by a chef or on my still underdeveloped skill of carb-counting while socializing. But after 12 years at it, I can now eyeball a restaurant plate or an unmeasured scoop of Grandma’s mashed potatoes and bolus with more than occasional accuracy.

  1. You’ve let your child sleep over at a friend’s house without considering a 2 a.m. break-in.

Even though my daughter’s first sleepover was a block from home and involved constant check-ins, I’m sure I got even less sleep than she did that night. The mornings after sleepovers still feel especially long until I get the text from her that she’s awake. But with each one it’s gotten easier to let her enjoy her time away and to seize the excuse to go out for dinner or binge-watch a few episodes of a favorite show instead of sitting around worrying.

  1. You can execute diabetes tasks by rote.

Blood sugar checks and insulin dosing go from being tasks requiring every bit of your focus and attention to ones you can do while carrying on a conversation or enjoying the scenery. Initially to do a blood sugar test, we needed to sit down at a table or at least a large park bench. It took us so long that I can remember being nervous that the meter’s timer would run out before I was able to get blood on the test strip. Now, anywhere with enough light to find her finger will do. Since my muscle memory has taken over, I can disconnect and reconnect an insulin pump on the fly at an amusement park, in a darkened theater, or on a windy beach.

  1. Your household speaks in diabetes shorthand.

In our house, there are notes scribbled on pretzel packages that say things like “27 = 12,” and there are applesauce containers in the fridge with “13” scrawled in purple marker on the foil lids. At mealtimes, we call out numbers to each other like a football team calls out plays. Generally I’m the one counting out loud to share the final carb count with whoever’s holding the pump’s meter remote to bolus with. It sounds something like this: “Rice for 21, plus 4 for the sauce is 25 plus the croutons is 30.” Hike!

For me, a few of these bits of progress happened within a year or so after diagnosis. Some of them, like the sleepovers, took more than a decade, and I’m still not completely there. But my support group friends were right. By learning we gained confidence. That confidence is still growing. I’m not at #11: “You’ve sent your child on a road trip without you.” Or #12: “You’ve sent your child away to college.” But with more and more small steps along the way, I’m confident they will happen.

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.

 

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