Most days I don’t even think about it.
That statement at once is true, yet couldn’t be further from the truth.
This morning my daughter asked, “Remember last Easter when I was diabetic and I could only eat some of the candy that was in the eggs that I found at the Easter Egg Hunt?”
I replied, “No, you weren’t diabetic last Easter. Not yet. I just didn’t want you eating too much candy.”
I find myself categorizing events as pre- and post- diabetes diagnosis. And she is beginning to as well.
We recently left a birthday party and as we drove past a familiar building she said, “Remember when daddy worked in that building and he took me on a tour? I wasn’t diabetic when he worked there.”
The conversation went on and culminated with the following:
Why do I have diabetes?
Some kids have diabetes and some don’t. Unfortunately, we don’t have a choice.
But we do have a choice and I choose not to be diabetic.
I’m sorry, but it’s not that simple and not our choice to make.
What do you say to a four-year-old saddled with a condition most adults can’t even handle?
That was the first time that she asked me why her? And as I continued driving tears came to my eyes because there was really nothing I could say or do to take it away from her. I cried most of the way to our destination, glad that she was seated behind me out of view, putting on the happiest voice I could as our banter continued on a different subject.
That’s what it’s like for her. She takes it all in stride. After a bad moment, she gets on with her life.
We are approaching the one year anniversary of her diagnosis. At once it seems like it’s been a long year and that it has flown by. At moments it feels like she’s been diabetic forever. At times I remember the pre-diagnosis freedom and it seems like only yesterday that we were carefree.
We could just jump in the car and go. Go wherever we wanted, whenever we wanted. Footloose and fancy free. And we could travel light.
Now every trip outside the home revolves around schedules. Three designated meal times. Three designated snack times. Divergence can mean drastic highs or drastic lows.
Now we require all the accoutrements: a big bag full of emergency snacks, drinks, her glucose meter, phone numbers, supplies, life-saving glucagon. Even more if we plan on dining out: insulin, pen needles, food guide, charts with blood glucose corrections and how much to bolus based on carbs consumed. And more.
My husband recently waxed nostalgic about their Sunday morning trips to a nearby lake. Every Sunday morning the two of them would take off on little adventures. Would walk around the lake at least once. Feed the ducks. Pick up and discard trash. Talk to whoever might be there fishing. Sometimes they would be gone so long they wouldn’t get back until lunchtime. Sometimes they would stop and dine and not get back until well into naptime.
Those were carefree days.
One warm afternoon a few weeks ago I took the kids for an afternoon walk. We ended up going to the park to play for a bit before trekking back home. My daughter and I used to go for long, long walks ending up at one of several parks at quite a distance from our home.
But last summer, we often drove to those same parks. My fear was that she would have a low and I would be stranded without a vehicle and unable to get help for her.
But we have to live our lives. We have to be constantly prepared for the worse, but we have to live.
So when I say that days go by without thinking about diabetes, it is both true and false. It is a part of every minute of our lives. It is ingrained in our routine. We constantly pack the heavy bag before leaving the house and dutifully lug it with us. We test her four times a day and give her four injections. We count carbs. We weigh and measure food. We read labels. We pack snacks. We fill prescriptions. We calculate insulin dosages. We awake at 2:00 in the morning to check her finger while she sleeps to make sure she isn’t going low after her long-lasting insulin has been increased.
It has become so routine that it is just a part of life now.
And then there are moments that hit me like a ton of bricks. Like when I read about another diabetic having a low in the middle of a store and thankfully an employee saw that it was a life-threatening emergency and got her juice. And I deeply weep because I know there will come a time when my own daughter is faced with the same situation and I will not be there to help her.