The editor reflects on the hidden gifts of having to manage T1D.
It’s the time of year for counting blessings and expressing gratitude. In this spirit, I’ve been thinking about the gifts of caring for a child with diabetes. There was a time when such a notion would have seemed preposterous; but over the years, I’ve come to appreciate that the disease, while terrible, can also be full of wonders. It’s true what the sociologist Arthur Frank says of chronic illness: “The terrors assault us at once; the wonders take longer to become visible.”
Here are a few of the wonders that I have discerned since my child’s T1D diagnosis nearly three years ago. I hope that someday she, too, sees the small marvels among the enormous terrors.
1. I’ve learned to cope with a loss of control.
To live with T1D—or any chronic illness—is to live with unpredictability. No day is guaranteed, and no amount of vigilance or planning can protect against the unexpected. Blood glucose will be erratic, despite meticulous carb-counting. New symptoms will present for no apparent reason. These daily realities compel one to “let go” and surrender illusions of being in command of life.
2. We have a village.
I’m amazed by the sheer number of people who have, at some point along the way, taken a turn in caring for my child’s diabetes. Family, school staff, friends and neighbors have graciously learned the complex regimens. Many of them even know the nuances and quirks— the effects of certain foods, the physical activities that impact her, the particular symptoms she exhibits. I’m grateful to each and every one of these individuals for their willingness to assume such a tremendous burden.
3. I have touched and been touched by others.
Thanks to T1D, I have formed connections with people whom I otherwise would never have encountered. I have become more attuned to others’ stories, and I can hear their voices speaking through my own. It comforts me to know that my daughter can find support in this same community. There will come a day when she appreciates the magnitude of the disease, which is certainly not to say that she is unaffected now. When that time comes, I know she will be in good hands.
4. I have found meaning in the ritual.
The regimens are exhausting, of course, but also sort of sacred. Going through the motions of finger pricks and injections reminds me of saying a prayer. During that time, everything stops. I am oriented toward one object, and I am reminded that most of the other noise doesn’t matter.
5. There’s Rufus.
I would be remiss if I didn’t mention the bear. I can’t quite put my finger on it, but this little creature, who has been there since Day 1 for us and many others, seems to have added a little magic to our lives. And that’s something.
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