New name for Type 1 Diabetes

We just started our second year with diabetes and it already feels like a lifetime.  Our everyday language and conversations has dramatically changed.  We never had to take time out before each meal to count and measure what we were eating.  Our language now contains questions, "What's your number?", "Is he high?", "Is he low?", "How many carbs are you eating?", "Have you checked your blood sugar?" and the list goes on.

I have let him do the things he wants to do.  This summer he got signed up for 3 camps.  I had a few people tell me how brave I am to let him go.  But I figure, your only a kid once and he has to learn how to live with his diabetes.  It isn't easy for me to let him go.  The biggest reason is that people just don't understand what diabetes is.  They don't understand how serious it is.  They also don't understand that we are only a little more than a year into this and he is not responsible for himself.  He needs someone to remind him to check his blood sugar, to count his carbs and to plug all that into his pump.When he was gone to the first camp this summer, he did pretty well.  He had one day where his pump site came off and he couldn't get it to stay on.  (He might have had better luck if he would have showered more often. :)) He tended to run on the lower side. Then came Bible camp.  Here there is one counselor for 6 or 8 boys.  I talked to the counselor and told him that Nathanael needed to check his blood sugar regularly.  His sister was there so I figure if there were any problems, she would be able to help.  Well, at the end of the week, I find out how camp really went....AWFUL!  He took his pump off on Monday and switched back to shots.  This would have been fine, if he was checking his blood sugar often.  Nope, one day he only checked once!  His sister also told his counselor that he needs to be reminded to check his blood sugar.  He ran really high the whole week, except for the one 39 that happened at 10:30 at night.  That was the day he only checked once.

Ever since he has gotten back from Bible camp, I have been trying to figure out what to do about camp next year.  How do I explain to the counselor that this is serious?  Well, today, I figured that I will no longer say he has diabetes.  I will say "He has a condition where his pancreas is broken and does not produce the insulin that the body needs to break down carbs.  He has to check his blood sugar to make sure that he isn't going too high or too low.  If he doesn't, he can die."  People just don't understand what diabetes is.  I am fortunate enough to live where we don't get questioned too often about what we are feeding him or how we are treating his illness.  We have a good school nurse who keeps a good eye on all the kids in school with T1D.  But how do I make the rest of the world understand.  I understand that the only person in this world who can take care of Nathanael is Nathanael but I count on adults to watch over him.   I count on the adults to hold him accountable.

So from now on, my son doesn't have Type 1 Diabetes, he has a condition where he can and will die if he doesn't pay attention to his blood sugar.