I made a mistake last night. A big one. I made a selfish decision. Though I thought it was in Madeline’s best interest, I realized later that this was not the truth.
The makings of this selfish decision actually started earlier in the week. Madeline and her sister Sophia brought home a flyer announcing a spaghetti dinner on Saturday night, a fundraiser for their school’s parent-teacher organization. In our pre-diabetes life, this was an event we would have attended without a second thought. But now, my thoughts quickly ran to the carbohydrate bomb dropping on Madeline’s dinner plate–yes, it could be managed by the proper dose of insulin–which would require all manner of finagling. I filed the flyer away and decided to think about it later.
As the week unfolded, we made arrangements to adopt a rescue dog–a black lab boy named Murphy. Turned out, pick up day would be Saturday. Two hours away from home. Not only that, but Madeline’s brother Rian had a baseball game that afternoon. As Wednesday turned to Thursday and our plans became finalized, I carried out the first phase of my selfish decision. I decided that attending the spaghetti dinner–after having traveled four hours roundtrip to get Murphy whilst managing Madeline’s rarely-cooperative-while-traveling glucose level, after attending Rian’s baseball game, and after trying to introduce Murphy to our home in a calm and organized way–was just not a reasonable option.
So Saturday arrived, and acrobatics ensued as Drew and I coordinated the events of the day. We finally crashed home around 4, just in time to start dinner. It was an exciting day, and we were all wiped out.
And then, the second phase of my selfish decision began to unfold. Sophia remembered the spaghetti dinner and begged for us to go. Her plea was full of guilt-inducing observations: but the people worked so hard to make this delicious dinner (which they had), but the PTO really needs money to buy cool things for the school (which was true), but our friends will be there (which they were), and on and on. Drew quickly jumped on board and decided to take Sophia to the dinner. Madeline caught wind of what was happening, and quickly asked if she could go to the dinner too.
I told her No, that we would stay home. I explained that it wouldn’t be kind to Murphy to leave him alone in his new, yet strange, home while we attended the dinner. Madeline whined. I explained that we would have to measure out the food in order to count the carbs. She wailed in protest, as she continues to be embarrassed when people out in public “see” that she has diabetes. I reminded her that if she was too picky about the food (a recurrent challenge when we eat out), that there might not be anything there for her to eat, and she would have to wait to eat until returning home. With that, Madeline retreated to the bathroom, crying. When she emerged, I told her that if she really wanted to go, that we could go.
But by then, my selfish decision making had already done its damage. Madeline told me that she wanted to stay home. So we stayed home; she gobbled up the dinner I made, played with Murphy, and chilled out in front of the TV after a long day on the road.
At the time, I thought I was doing the right thing. I did feel badly, in the moment, that I had said No. But the reasons I gave her seemed reasonable to me. Life with diabetes means that we face new challenges in every single thing we do. I’ve been trying hard to educate Madeline about those challenges–not to break her spirit, but to teach her how to consider information and make informed choices. On Saturday night, this is what I thought I was doing for her.
It occurred to me this morning that the No, and later, the Yes that came after all the challenges were laid out, were carried out for my benefit, not Madeline’s benefit. Why? Because all of these challenges are challenges for ME, primarily. She shares them, yes… but it is up to ME to measure out her food when we go out to eat. It is up to ME to make sure that the D-kit is fully stocked and ready to go. It is ME that is responsible for carrying along a gazillion food choices in case she has a hard time finding something she likes. It is up to ME to calculate the carbs, measure the insulin, administer the injection, and monitor her response. That stuff– the trenchwork of managing Madeline’s diabetes–is my responsibility. I involve her in all those actions, of course, but let’s be real: she’s 6, so managing the D-burden is primarily mine to bear right now.
And so, I find myself trying to find ways to reduce that burden however possible. I do hours of research on food options and glucose management. I do that to better inform myself, so that the day-to-day management becomes a little easier. I registered for a web-based data program to track every element of Madeline’s treatment. I do that so that I only have to enter information once, yet I and anyone else on her medical team can see the treatment play-by-play without me having to repeat it, repeat it, repeat it. There are countless other things I do in an effort to reduce the burden and get as much control as possible, while still living our lives.
So on Saturday night (and really, all week long), the decisions I made that led to the No were ones that were helping me to reduce MY burden. They were NOT about what was best for Madeline. Instead, I dumped MY burden onto her, and put out the spark. What would have been best for her? I would have really heard her desire, earlier in the week, to attend the dinner. I would have said Yes, then. When she asked again on Saturday night, I would not have said No, I would not have thrown out the information about all those damn challenges. I would have understood that there are times when Madeline needs to be free of them–as free as she can be, anyway. I would have said Yes, Let’s Go! and swallowed my worry, my frustration, and my weariness about managing diabetes so that she could have enjoyed the evening unburdened.
I need to tell her I’m sorry. Diabetes isn’t going away, and it’s my responsibility to make sure Madeline can live her life as fully as possible, despite its challenges. I can’t make this mistake again.