Mostly I’m pretty positive about diabetes. It could be worse. I’m thankful that Ainsley never got terribly sick before we caught it. I’m thankful she was such a champion when we were learning to poke her a million times a day. I’m thankful for our pump and our cgm and that we have the ability for me to be home and give her good care.

But there are the times when it’s really challenging to be positive. As a stay-at-home parent of a toddler, you never get away from diabetes. My child doesn’t go to school. I don’t go to work. There are no babysitters, no trained caregivers. There’s my husband but he works full-time so he’s not in the role of primary diabetes manager.  Even when he’s home, I’m on call.

This is what is so hard about diabetes. You can learn to prime a pump, measure insulin, give injections, count carbs, calibrate a cgm. Any of you could learn those things if you had to. You learn it, you get used it, it becomes part of your normal life. The hard part is that you can never get away from it.  Any burden becomes crushing that is never alleviated. When that feeling reaches critical mass, we call it diabetes burnout.

I’ve been aware of this, although we haven’t really been dealing with diabetes for that long at 8 months.  We’ve tried to stave off full burnout in little ways – going out for dinner with a girlfriend, going to a party across the street (so we can still walk back and forth to do care), running to a movie when Ainsley’s very stable and my mom can watch her for a couple of hours.  Greg has his woodworking. I try to lose myself in my books.

What never occurred to me was staving off burnout for Ainsley. At 2 yo, she seems mostly oblivious to all of this. She runs and plays and has no idea what her blood sugar means or even what diabetes really is. I have completely taken for granted that we wouldn’t have to worry about how she feels about diabetes for a while yet.  More fool am I.

When she was first diagnosed, we were the luckiest parents in the world. She didn’t cry for injections. Never batted an eyelash for her first infusion set. Just looked at me when I (crappily) inserted her first Dexcom. Over time this has been changing. She has become the most resistent to Dex insertions to the point that we finally broke down and got a prescription for EMLA numbing cream and have been trying to retrain her that when we use the cream, the insertion doesn’t hurt.

Meanwhile she has also been  becoming more resistant to pump site changes. This came to a head yesterday. Ainsley got her sister’s flu. She had been complaining all day that her site was poking her. She eventually broke down and started crying over it and I decided something was wrong and it needed to come out. She now fears a new set so much that she didn’t want me to remove the old one even though it was hurting her. It didn’t help that she had a high fever, hadn’t eaten, and felt like crap. This turned into an hour-long drama with tears all around. I finally got the old set out only when Greg came home and held her while I forcibly removed it. It doesn’t hurt to take it out, but still I HATE IT when we have to forcibly restrain her to do something with her diabetes.

This was sufficient trauma that she ended up in my lap while I rocked her and she cried herself out. Then she looked at me with teary, trusting eyes and a sincerely hopeful expression and asked, “Mommy, if we wish on a star can we make diabetes go away?”