Every time Joey asks to go to a friends house, or to a basketball game at school, or to a sleepover with his friends, I have to think about it before I give him an answer. The answer is rarely if ever no, but I have to think about it, and come up with a plan to make it work. Things that come into mind are: who will he be with? Will anyone there know how to respond to a high/low blood sugar?
Type 1 diabetes is a disease that is misunderstood, and confusing to most people. I can’t just leave Joey with someone that doesn’t have a clue. And it’s overwhelming to most people, as it was for us. For that reason, Joey doesn’t get invited to do a lot of things with friends. He does have his best friends who always include him, but we know that there are a lot of things he misses out on, because of others’ fears.
We try to let him do everything that he should be doing for his age. He’s going to be 12 this April, a normal preteen kid who wants to start doing things with his friends, without mom or dad tagging along. I guess defining “normal” is our biggest challenge. And keeping him from feeling abnormal.
We don’t ever want Joey to think that he can’t do something because he has type 1 diabetes. We had the struggle with letting him play football, my struggle really, Joe was always OK with it. I don’t want diabetes to define who he is. So, if I say “no” to something he wants to do, I never let him know that it’s because I’m scared that he can’t take care of himself. In fact I very rarely say no, I say, “how can we make this happen.”
There are some things that require an adult to make sure Joey is safe, like sledding or other strenuous activity that drops his blood sugar, there is no getting away from that, at least at this age.
Sleepovers are a struggle because I still check Joey at 2:00 am. I have had parents willing to check him at 2:00, and text me. The last time he went to a sleepover, it wasn’t successful, he had to come home at 4:00 am with blood sugars in the 400’s and a terrible headache. I’m sure it was from him wrestling with his friends, which is completely normal, but his pod from his pump was knocked off his body, so he wasn’t getting insulin. Plus he probably didn’t dose the right amount for his dinner and birthday cake. I probably should have gone to the party and helped him dose for dinner, but he really didn’t want me there.
Did we learn a lesson from the sleepover mishap? Yes, we learned that next time we’ll do things differently. Like he will send me a picture of the pizza, cake, snacks, whatever he is eating. And, we’ll make sure if he’s wresting around, that he checks his cannula to make sure it’s secure. (The cannula is the tube that is inserted into his body, which delivers the insulin.)
We won’t let type 1 diabetes define who our boy is, we will go through life redefining how we let him do the things that he loves to do. Whatever it takes, he’ll never feel that type 1 is holding him back.