It gets very lonely when there is just one of you because there is no one to share in the worry and fatigue of what has become a daily ritual so that the headaches and sleeplessness and frayed nerves are yours and yours alone. When being apart was something you were just planning for at a time when your child had been recently diagnosed with diabetes and one of you was going to be gone for a significant period of time it looked much easier to carry out those plans if you made travel arrangements of your own for yourself and the rest of the family. Then everyone could be removed from whatever drudgery had become the routine and make something new of it. But there is little to find good in a new regimen if it includes the same troublesome tasks and lively misgivings you had to begin with at home. You are just packing up and taking those obligations with you and then unpacking them in a place that for all its homeyness suddenly is made to feel alien and strange with this excess baggage.
Franca had organized and booked an eight day trip to France last fall for herself and several of her students. This came months in advance of Lia’s holiday diagnosis and though she no longer looked forward to the trip with as much anticipation as when she had planned it, she was the group’s leader and could not hardly cancel. Besides, originally the timing of it worked out well because it occurred over the kids’ school break so I could take them for a short visit to my mother’s, who lives five hours away, thereby lessening, I hoped, in some small increment the impact of my wife’s absence in our lives. The kids were due a visit anyway. We had intended to go at Christmastime and had not been to her house since last summer so the girls were anxious to get back. I was excited too as I found the idea of a change in scenery very persuasive. But mostly I went just so I would not miss Franca as much.
Her flight departed on Thursday. Lia, Krista and I left Saturday after Lia’s soccer game. Despite her afternoon activity, Lia’s blood sugar levels had been high since dinner the night before and by the time we arrived at my mother’s house around suppertime it had been hovering for most of the day in the low to mid 200s. We treated it and ate and went outside and played until well after dark with my sister and her three children, who had kindly come too for a visit. By 10:30 and bedtime, her sugars had dropped to 73. I treated it with two glucose tabs and set my alarm from 2:00 a.m., at which time it checked out at 83. Still worrisome, I set the alarm again to wake me up two hours later and check it again, where it read finally, 114. I fell back asleep beside her imagining that this is what it might be like if I were to do this always alone: Restless sleep interspersed with periods of wakefulness filled with an edgy worry over the balance of food, activity, stress, insulin, and excitement and what effect these basic necessities of life were having on blood sugar levels, and with no end in sight whatsoever.
Meanwhile Franca has been providing daily updates of her tour through Paris and the lovely and picturesque Loire Valley; of visiting grand chateaus and dungeons and ancient troglodyte caves; of eating mushrooms and escargot, and tasting splendid wines; then of driving north up through Brittany to Mont Saint Michel and Saint Malo, where on the bay each spring the crashing high tides transform the sea into a raging spectacle. I have been to Paris and traveled the French countryside with Franca before and though the weather this time has been wet and cold and her schedule hurried and crammed with events, this trip has been good for her. It’s been a chance to get away and experience the food, scenery and culture of a world foreign and vastly disconnected from what our lives have become since last December.
But it has been hard on her too, and not just in the way you might miss being with your family. Back in January we had all taken part in a clinical trial to screen for diabetes-related autoantibodies. Two weeks before she had left, the results came back indicating everyone’s test was negative. When Franca read her letter there was real sorrow in her eyes.
You’re disappointed? I asked.
You really hoped it would come back positive?
She had told me once before almost in tears that she wished she had diabetes too so Lia wouldn’t have to do this alone, so she would have someone there with her testing their blood, taking their shots, counting their carbs together. Now this letter had come in the mail informing her that the chance of that was low.
Since then nothing has changed. That is simply how strongly she feels about being away while in the midst of this life-altering adjustment. That no matter how far we travel, five hours or an ocean away, diabetes is with us wherever we we go.
After two nights at my mother’s and another at the house of friends, we returned home. It was a nice visit with mostly nice weather and everyone, especially the girls, enjoyed themselves, which was what they had both expected. I, myself, had not known quite what to expect — Family, camaraderie. Certainly not a vacation, not relief from the concerns and struggles that accompany diabetes — and so in return I have little to say about it, other than it was pleasant and I have few regrets. It was good to see everybody and it was good for them to see Lia too, so they can understand better what diabetes is to her and what her life and our lives are like because of it. But this trip was very hard because I was alone and Franca was not there to worry and hold hands and lose sleep together, so I can see the welfare in our staying put and accepting things as they are and not trying to tinker too much with them when there is only one of you.
In these early months after diagnosis, though, every new thing is a learning experience and someday, I hope, even the ritual will feel routine; but until then we have Lia’s sleepover at her little friend’s house, which means one more lonely sleepless night.