We've been incredibly lucky that for the first two years since diagnosis, Jessica has been shockingly compliant. I knew it would not always be so, although I hoped that it would. And, seriously...who really can be completely compliant when managing any medical condition? I've been in practice, and on this earth long enough to know compliance is really a myth. We can try our best to do "the right thing," but long term it is a hard reality. And, so most of us try to focus on "good enough." Diabetes is perhaps the ultimate compliance tester. Who can truly measure and count the carbs in every morsel of food they eat? I can speak from experience that "good enough" has to be the rule.
The problem is that lately I don't even think we are at good enough.
For the past month Jessica's numbers have been completely out of control. Her mood has matched her numbers, making it even harder to try to get things back on track. She's been irritable and frustrated. She has also entered the age of refusing to wear her dexcom (more sleepless nights for mom and dad), hating how her pump looks, and hating being different. More days than not when I pick her up she has had whatever random treat was brought into class that day, and either not bolused for it, or guessed at the carbs. There have also been a paucity of blood sugar checks. All of this has made it incredibly challenging to figure out what basal or I:C ratio needs to be adjusted. She is tired of being high and has repeatedly asked for her rates to be changed. I have felt like throwing my hands up in the air and screaming "Do you want me to randomly pick a rate to change???" In short, things have not been good, and we have not been on the same team.
I am so tired of the whole thing, and I can't imagine how she feels. It is such a relentless, exhausting disease. And, I have a hard time coming up with one that is as emotionally charged in the guilt factor. We eat fast food due to no time and I feel guilty. Jess has the class treat and I see her guilt when she tells me. I hate the ridiculously unhealthy relationship with food that diabetes fosters. Yes, she is overall eating healthier because of diabetes, but I hate that she feels guilty about having the treats all the other kids have. And, of course I am left wondering why the heck are our kids having so many treats???? But, I digress.
I have tried to talk with Jessica and it hasn't gone far. Tonight was different, although I am not altogether sure why. She checked her blood sugar and it was 298. For whatever reason, this time she started crying and said "I am so sick of being high." This led to a deluge of information from there. She hates diabetes (I knew that), the longer she has it, the more she is doubting a cure will come. She is tired of taking care of her diabetes and doesn't want to do it anymore, but yet knows she has to. She is reading a book in school where the character loses a toe, and has not been able to stop thinking about her losing her own toes. She's tired of being high. She's tired of feeling cranky. And, the list went on and on as I just sat and held her.
We've reached a road not yet traveled. My little girl that I can truly take care of is no where to be found. Instead there is this tween who is making her own decisions, yet obviously still needs my help. But, the help is different. She no longer wants me to write out her meal plan. She will no longer let me tell her what to eat. She wants to make her own decisions. And, that is completely reasonable. She's also scared, yet doesn't admit this to me like she used to. She thinks she now knows more about diabetes..."you have no idea what this is like..." and she is somewhat right. She does know more about some aspects. I will never truly understand what it is like to be the person living with this. For as completely exhausted as I am (I swear I have aged ten years in the two since she has been diagnosed), I can not imagine how exhausted she is.
Tonight I realized that although I have always tried to let her take ownership, and have tried hard to teach her instead of telling her, I need to do more. She's great at reading nutrition labels, but when a cake or brownie comes into the classroom this doesn't help her. So, we got back out the carb food flashcards we haven't done together in over a year. We went through them together and both guessed and made it a game to see who was right. She asked if we could do it again soon. I told her about an online carb counting class she could take, and she was thrilled. She wants to learn more, and I know that knowledge will only help. We haven't focused lately on keeping her diabetes education growing, and I realized tonight that we need to do that now.
I know the seas won't be smooth sailing, but for the first time in awhile I felt like we were a team again tonight.