When the three of us arrived at this lavish resort there was much excitement and gaiety. It was sunny and warm and the hotel and landscaped grounds were elegant and stunning. We had travelled before as a family to other various interesting places — Paris, Rome, Belgium, Germany — but those trips were mostly family visits and Lia, the youngest of us, especially, could count on one hand the number of times she had stayed in a hotel, much less one as deluxe as this. For her, the very moment we entered through the enormous revolving door everything turned wondrous and magical. From the woodcrafted staircase and textured floors to the foosball table in the sports lounge, Lia was thrilled beyond measure.
The exuberance Franca and I were feeling was of a bit different nature. We had both wanted and needed to get out of the house if for no other reason than to shake the fresh hellishness of the holidays. Though our house was far more pleasant than the hospital, it had become little more than a cafeteria and nursing station, with around the clock food prep and health analysis. We had to get out and get away, in much the same way new parents must eventually venture outside the home with their newborn baby. We had to be tested. Could we handle the pressure? Did we know enough to control any situation? Could we be careful enough not to cause our precious little package more hardship? On the surface this trip was to attend a family conference on diabetes, that was our reason for being there, but on a much more innate level it was about us reasserting ourselves as parents, as the ones in charge. The Head Honchos. The first thing we did, of course, was screw things up.
Because we were in the car at the time we missed Lia’s afternoon blood sugar reading, which when we finally checked at the hotel came in at whopping 315 and should’ve been treated with insulin, but the time was too close to dinner for us to dose then. So we went downstairs to the lobby, where more people were coming in from the parking lot, and checked in with one of the volunteers, who directed us to the registration area. We signed in and walked and looked around the hotel some and by dinner her level had dropped to 237. Not good, but manageable. We juiced her and ate and listened with interest to the guest speaker, all the time believing that with her numbers trending down, we were back on top of things. Ninety minutes later, she complained of feeling dizzy. Her blood sugar read 49. We treated the low with juice and fifteen minutes later she was back up to 109.
Parents 1, Diabetes 0.
An hour after that she complained again of dizziness and was back down to 64. Tied up.
Fifteen minutes later, she tested at 59.
We were were exhausted, feeling outwitted and a little bit afraid, but thirty minutes later her blood sugars leveled out in the 120s and we went to sleep. At one o’clock, Franca took another blood sugar test. It read 271.
It’s maddening, this disease. We left home hoping to find something positive, some promise on which to build on our faith that one day our daughter won’t have to deal with this contrary illness. Instead, we found contradiction and opposition. We weren’t ready to leave the house. We weren’t ready to be put in charge again.
The next morning we rose and went about attending the conference, which went actually very well. Other than one minor afternoon low, Lia’s body did what we asked of it. Some of the speakers at the information sessions we attended talked over our heads, some not high enough. Mostly though they shared with us many useful things: techniques for coping, techniques for cooking, techniques for finding resources. They lectured us on the objectives of diabetes research and we met a number of people, in fact, who’ve been managing their diabetes for years, even decades, and been the beneficiary of such scientific breakthroughs. We made many helpful contacts with those who live near us and discovered a fellowship of like-minded people, who try to look past the wonderful, amazing assortment of tools aiding in the treatment of diabetes for a cure.
That is the real test, finding a cure, becoming part of that discovery. Perhaps only then can a parent lay down their heads at night and sleep without worry, without envy.