Pod Change Night

It is pod change night again. It's always pod change night. Okay, every three nights is pod change night, but I swear we just did this last night.

I hear it calling to me in my sleep ... beep beep, beep beep ... beep beep, beep beep ...

Diabetes never ends. Ever.

Extreme Responsibility: Diabetes Edition

One joy of the potty-trained child, bottle-weaned child is not having to carry a diaper bag around. You go from lugging a huge sack of crap on your shoulder every time you leave the house to, maybe, a spare change of clothes in the trunk. It is a glorious thing!

Diabetes, though, brings back the bag. We do not leave the house without her insulin pump controller, back-up batteries, blood sugar test strips, lancets, insulin, a back-up syringe, a back-up pump, alcohol wipes, a glucagon injection, a juice box, and glucose tablets. From place to place, location to location, we drag around a bag to hold all of these supplies. Granted the supplies are small, so unlike a diaper bag, the diabetes bag in small. However, unlike the diaper bag, there is a great sense of responsibility. Inside are over $1000 of medical supplies which quite literally keep C alive.

Also, because I am crazy, I don't carry around the bag ... I have the 5-year-old diabetic do it. I purposefully chose a messenger-style bag so it would be easy for her to carry. It may be an extreme lesson in responsibility, and perhaps a large weight for a 5-year-old to carry, but I can assure you of two things:

1. She doesn't feel the weight of responsibility like I do. To her it's just her diabetes bag, not all that other stressful money/life-line stuff.
2. It is something she has to get used to. She will have diabetes until there is a cure. And while that will happen in her lifetime, it won't happen tomorrow, so she needs to get used to caring and keeping up with her supplies.

I'd love to ditch the bag and let her be a kid who just has to keep up with her jacket, but this is the reality of diabetes - needing supplies on hand 24/7 no matter where you are. So I at least let her pick out her own fabric and had a friend help me make a bag that she is proud to carry - at least until she gets too old for Sprinkles and Sparkles.

True Friends

I was a little worried when C went back to school after getting her pump. While she had no visible signs of being a diabetic before the pump, it was obvious that she was a little different from the other students. She left for lunch before the other kids so she could go to the nurse for her blood sugar check and her insulin, and she was usually waiting for the rest of the class in the cafeteria when they got there. Additionally, she has no-questions-asked access to the restroom and the nurse. With the addition of the pump to her management plan, it is now physically obvious that she is different. For example, when it's on her arm, and she's in short sleeves, you cannot miss this thing.

I wasn't worried that the nurse would mess it up, or that it would fall off while she was playing. I know that 5-year-old kids can be super jealous when someone else gets special treatment, so I was worried that the other kids would say something about it looking stupid or call her names just to try to knock her down a peg. She is so sensitive, and gets her feelings hurt so easily, that I knew it would devastate her if one of the other kids made her feel self-conscious about having a pump on. We worked so hard to get her to agree to do this, and I was worried she would want to quit because of some insensitive comment.

So when C came home and told me that all of the kids in her class thought her pump was "neat" and "cool," I almost cried. Maybe it's because a friend made a pink and black zebra striped cover for the pump out of duct tape. Maybe it's because C is really and truly interested in being every one's friend. Or maybe I just underestimated these kids and the awesome way their parents raised them. Whatever it was, none of them has said anything negative to C about her pump or her diabetes.

I've heard other parents of diabetic children talk about how their kids are teased about being different. One kid even raised her hand and asked, in front of the entire class, if she could move because she didn't want to sit next to the "sick kid" all the time. So it makes me happy that C is having such an easy time with all of this right now. I know that she may not always; there will eventually be some kid who says something really stupid to her out of jealousy and spite, but her classmates have proved to me that there will also be kids on her side. Kids who will possibly tell the mean kid where to shove it. In other words, true friends. I didn't think five-year-olds were capable of being true friends, but I will happily say that, in this case, I had nothing to worry about.

Nailed it! ... Sort of ... not really ...

Ah, Thanksgiving. Like most families, ours gets together to eat what can only be described as obscene amounts of food, watch football, and referee small cousins who do not like to share yet. Yes, it is a magical time in our home. Well, less "magical" and more "the kind of crazy you expect when a family gets together."

Yesterday was our first holiday with C on a pump, and it was great. With shots, someone's dinner was delayed so that C could get the insulin she needed, but now insulin is delivered with the push of a button. This little thing is genius. But do you know what it can't do? Estimate carbohydrates.

We still have to do that (come on, technology ... get with it). I do this through a method I refer to as "calling it." It's a difficult, highly scientific skill, really, requiring you to hover your hand about a foot over the plate of food, sense the carbohydrates radiating off of the food, then "call it" by saying out loud the number of carbs you have sensed on the plate. Complicated, really.

And yesterday I was terrible at it. She was way too high at bedtime, so I had to give her extra insulin, which means I had to get up in the middle of the night and check her. Yep ... I totally misjudged that one.

The Screech of Death

Insulin pumps are not new technology, but a pump is new technology in our house. For a little over four years, we managed C's diabetes with multiple daily injections. But C finally (FINALLY!!) agreed to an insulin pump at the end of the summer. After clearing all the insurance red tape and getting a training time, she has been pumping for just under two weeks.It is awesome, but that's not what this post is about. This post is about the Screech of Death, so let's get to that, shall we?

Last night the kids were playing in the back yard while the hubs and I sat on the swing.The neighbor has a work van which makes that beep, beep, beep sound when it backs up, and since he had been driving that thing back and forth on his driveway (don't ask ... I don't know either), I had started to tune out odd noises. However, I started to notice a high-pitched whining noise. It sounded like what I imagine a dog whistle sounds like to dogs. The hubs and I couldn't place it, so we dismissed it. I thought another neighbor must be out doing work with power tools or something. I tuned that noise out, too, and kept working on my scarf and chatting with the hubs.

A good five minutes later I realized it was still there. I also realized it was getting louder as C got closer to me. And it hit me - that is not a neighbor; that is the Screech of Death! 

I should mention here that at our training a week and a half ago, the Certified Diabetes Educator told us that if the insulin pump failed ... if it stopped delivering insulin for any reason ... it would "scream" at us. I had apparently forgotten that part of the training.

We checked it and her pump had, indeed, failed. The insulin was no longer able to get into her body, so it did what it is programmed to do ... it emitted the Screech of Death so we would know to take care of it. It wasn't as epic as I thought it would be. I imagined having to cover my ears or they would bleed. I mean, a stop in insulin delivery is a pretty big deal. There should be flashing lights and sirens. But what I got was the annoying sound of a mosquito buzzing in my ear. The Screech of Death did not meet my expectations of the epicness it should be. (Did anyone from Insulet take a note just then? Because someone over there should have.)

We got the pump changed and the screeching stopped, but I'm a little disappointed that we were able to stop it. I have heard tales of pumps that wouldn't quit screeching, so the owner took a hammer to it. I imagine that when it happens to me, I'll be bashing it to pieces while screaming, "Die! Die! Die!" Free therapy, I think.I can't wait.

I am a parent, not a pancreas.

I remember sitting in a hospital room with the Certified Diabetes Educator just 36 hours or so after C had been diagnosed with diabetes. The CDE was going over some things with my husband and me. We got a lot of information in the days we were in the hospital, and I'll admit that I forgot some of a lot of it before we actually went home, but I'll never forget him saying, "Remember, you are a parent, not a pancreas."

At the time, I thought he was so wise. "He's right," I thought. "I am her parent. Nothing more." Since then, though, I have come to the conclusion that his statement was complete and total crap. Last time I checked, her pancreas sucked. So, really, we are the only pancreas she's got.

We measure blood sugar and ingested carbohydrates, weigh that against any physical activity, and decide how much insulin she should get.We are up at 1:30, 2:30, 3:30, 4:30am monitoring her current blood sugar. We actually administer the insulin. We are her pancreas ... We. Are. It.

I do get what he was saying: we don't get 24/7 instructions and feedback from her brain like a real pancreas does, so it's really a guessing game to keep it all in balance. If we try to figure out why everything we did worked one day, but the next day, when we did the exact same things, it all fell apart like a Jenga tower, we will go crazy. And I can't afford to go crazy, because one thing I know I am is a warrior, a fighter, a ninja. But my husband and I are the only thing keeping her alive at this point. Without our diligence, our data analysis, our ability to do fraction-based math, she would literally die. And that, ladies and gentlemen, is not an acceptable outcome (nominee for understatement of the year, right there).

So we will be parents AND her pancreas AND ninjas - all three - so that my daughter, who needs all three, can have them.