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Despite my initial rant, Charlie’s week of hockey camp was great. He had a blast. Once we settled into the routine and got the lay of the land, everything went more smoothly. After a week of tagging along with the hockey counselors all over the Princeton campus and dealing with some very badly behaved 7 and 8 year olds, I’m happy to get back to my normal life. Ha! Normal!

As they should be, the other kids were curious about Charlie’s pump. During the week, several kids asked Charlie what it was. Charlie educated a few and at other times, he’d defer to me.

"Does that hurt him?" one kid asked after I tested Charlie’s blood sugar.

Charlie held his finger out, accepted the prick with no reaction and then pulled his hockey mask over his head and darted out of the locker room toward the ice before I could even answer the boy.

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Warning: the following blog post contains graphic violence, adult language and brief nudity. I may have slightly overstated the part about brief nudity, but it is indeed a full-on rant with some inappropriate language. To soften the vulgarity, I have inserted the word "frog" and variations of the word according to context.

The scene: Ice hockey camp, Princeton University.

It’s just so mother-frogging frustrating. I was worried that the ITILs (I think I’m lows) would make it hard for Charlie to enjoy his time at the camp. It didn’t take long at all before he looked at me through the frogging rink glass and flashed me the teetering hand - a gesture indicating that he could be low.

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I hate putting the damn thing on the kid and I hate how abusive the whole process is, but man, I love it once it's on. A few nights ago, the thing was screaming its blue plastic head off, letting the whole house know that Charlie was low while he slept.  Thank you, CGM. I hear you. Fortunately, it seems Charlie has outgrown the anxiety he once had over the alarms that go off in the middle of the night. Now he sleeps through it.

We are now in a low period. This comes after about two weeks of highs. It's hard to say that we are enjoying this low period, though it sure beats the highs. At least with the lows, you can do something about it. With the recent highs, insulin seemed impenetrable.  And the lows allow Charlie to eat more food. This makes him very happy as his appetite is endless. The highs just put all of us in a shit mood.

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Eventually, the kid with diabetes has to go home.

Eventually he has to wave goodbye to his insulin-producing friends in their baggy pajamas and their special pillows and their faces full of uncounted cookies.

No sleepover for Charlie.

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Health issues can be especially lonely at times. Your body is racked with pain, your head is spinning from a low, or you're just worn out from a night of blood sugar issues. Chronic issues don't exactly create a great place of friendship and community. Yet it's so vital for us chronic care patients to bond together.

We are all struggling and trying to survive with whatever ailments we are going through. We are all feeling lonely, depressed, and frustrated. We need places to turn to lay our heads down, to say "I can't do this anymore!" and to just be heard. Truly heard.

At four years old, I couldn't grasp diabetes or community or how important it all might be for the rest of my life. I really don't remember what I grasped back then, except I've been told that I was just angry. And I couldn't understand why the doctors couldn't fix me. They were doctors! They were supposed to make you better!

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Charlie sat on the bench in a somewhat meditative state. Even the blank expression on his face seemed by design to be a strategy in which to conserve energy. If he blinked his eyes less frequently and stayed perfectly still, perhaps his blood sugar would remain above 100.

"Charlie, you can skate a little bit before hockey starts," I said. "You’ve got about 10 minutes."

"Neh," Charlie said calmly and without emotion. "I really don’t want to go low this time."

Who can blame him after last week’s debacle.

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Greetings from the night shift. I’m taking the first shift and Susanne is taking the next. It’s 12:30 am and Charlie is 366. Not sure what’s going on. Though, being that it’s a new site and he didn’t eat anything out of the ordinary, I’ve narrowed it down to either a growth spurt or some sort of illness brewing.

I wish I knew what it was. I want a smart pump that gives a warning that growth hormones are at play and gives a recommended temporary basal increase level. If not that, I wish I could actually see him growing with the naked eye. Like the Hulk, busting out of his pajamas. Mystery solved.

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Someone will post that he was told he has "borderline diabetes" or "prediabetes", or that he had type 2 diabetes, but since he changed his diet, got off his diabetes medications, and has normal lab results, he has reversed or cured his diabetes.

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Without going into the sordid details, we have been without gas and electric for the better part of the past week, and will probably remain so for the next two or three days.

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