Saturday, May 29, 2010

I always thought I'd be the cool mom. The one who everyone liked and no one talked bad about behind her back. Everyone would love to come to our house because I'd have cookies for them and know the cool songs and what they were into.

Then my son was diagnosed with Type 1 diabetes. After yesterday, I have decided I have to be the mean ogre mom. The one who no one can stand and the one who everyone avoids. The one that is so rigid and strict with her kids that no one invites them over because of the rules and no one wants to come over for the same reason. All so my son can live.

I have tried so hard to keep my sons life normal since he was diagnosed with Type 1 almost 3 years ago. The hardest part has been letting him hang out with his friends and go to friends houses. At first, everyone was really concerned and careful about what needed done. And I wouldn't say they still aren't. It's A. He seems to take really good care of his diabetes. He seems to do exactly what he needs to do. He's so good at it, that people take it for granted he's doing what he should. No one questions him.

He has been at a friends house and gone 8 hours without testing. He didn't even test for his meal that night. He ate three hot dogs for supper because they were protein and he knew they were gluten-free. (Also an issue for him.) Yesterday takes the cake though. After staying at a friends house for almost 30 hours, I almost had to put him in the hospital. I sent a note to the mom telling her the things he has to do and what things he usually forgets, so I thought we'd be okay. I prayed, I put him in God's hands. I asked for God to remind him of what he needs to do. When I got home at 5:00, he was sleeping. I figured that was the best thing for him, so I let him be. I woke him about supper time and had him check. He was 502. Ketones were moderate. This often happens when he goes anywhere overnight and doesn't get his sleep. Before calling the nurse, I decided I'd check the meter and pump so we knew how he'd been. The only time he had checked or bolused all day was at 10:30am that morning. I kid you not. I about went into orbit. He hadn't done too bad the day before, not great, but not that bad. But, ONE check all day? Seriously, A. you're 11 years old, you're not new to this, you know you have to do this!

So, no more overnights, no more going to friends houses, period. What can I do? I'd like to have my son see 18. This disease is manageable, you can live with it and control it. It's doable, not fun, but doable. But you have to do it!!!

I have heard of kids losing their friends because of the disease and I could see that happening now. We aren't the fun house to come to. We don't have a Wii, we don't have a trampoline, I limit movies and TV. We have always had a limited budget, but when A. was diagnosed, our older son had had his tonsils out the week before. We got hit with 14 different doctor bills at once. It has taken us this long to feel like maybe we'll make it. We don't randomly go to movies, if we do it's planned and budgeted and taking other kids along and paying for them makes me shudder. Same for bowling, or laser tagging or paint balling or, or, or.......so, telling kids, he can't come there, but you can come to our house, isn't usually received with joy. But, if he won't take care of himself, he's not going without one of us.

He has a basketball camp next week, guess who will be going and doing her college homework on the sidelines so I can make sure he test every hour as he should? We also got a birthday invite in the mail today for a paintball party. I have no idea how to handle that situation. I'd like to toss the information and never let him know, but our town is small enough, he'll know. I may just invite myself along. I don't know.

I don't know that anyone ever reads these or that anyone cares to read this rant, but I needed to get it out somehow. I know God is bigger than all this and that my sons life is more important than what everyone thinks of me, but it's one of those hard things for me to break though. This will be hard.