I haven’t spoken about my son’s Type 1 Diabetes in a while, but know this – he has taken more control of it and is actually doing better. I still think about it 24/7, of course, but he’s surprised me by actually caring. On August 22, it will be 3 years since his Type 1 Diabetes when he was in DKA (Diabetic Keto Acidosis). My son has grown so much since then (yes, he is taller than me at least by two inches or more). He’ll be 15 after the summer ends, but I still hate that this disease has stolen his youth. He’s had to grow up a lot more than other kids his age. However, I still do a lot of his nighttime care (he doesn’t wake up to hear his blood sugar alarms ?). But he manages it more during the day. How did he get more independent? Was it my stellar parenting?
My husband suggested (very gently and many times) that I tell him I was stepping back and wasn’t going to do it anymore. He has turned off alarms and didn’t panic when I would react to B going low during the day and at night. I resented my husband for that and I got upset — why was I the only one caring about diabetes?? But then I realized it really wasn’t that. My husband cared. He just wanted B to learn how to handle things himself and that was absolutely fine. But I just didn’t feel confident that he would actually handle things.
But Then I Got Burned Out
During the pandemic I broke. I got burned out with his care. I was managing wayyyyy more than I usually would have. I thought my always cooking, handling his blood sugar insulin dosing (called bolusing) or insulin corrections, and handling blood sugar lows would work. but my kid completely stopped cooperating. I understand for younger kids, parents cannot take a break, but my son was doing things that were wrecking everything with his Type 1 Diabetes. I would treat his high blood sugar and instead of listening and following what I suggested he would then panic and give himself wayyy more insulin through his pump than was healthy. I wasn’t sleeping because he would have 11 units of insulin on board his pump (which is a BIG dose) and would go from very high to very low. I was a wreck. My son and I were arguing about his Diabetes all the time — as if being locked down with three kids wasn’t hard enough. Right before lockdown, we had switched endocrinologists and our new doctor wanted to look at the causes of his low and high blood ? sugars instead of just changing his pump’s setting. She had suggestions and I listened.
I realized that I had to start stepping back — or at least appear to and let him step up, but would he?
So I stepped back (actually I pretended to). I announced that he would have to deal with it. I shocked myself, but at this point, something needed to be done and me always taking care of everything wasn’t cutting it. My husband didn’t really want to deal with anything – but he’s able to relax at night, why can’t I?
B has stepped up. He now takes care of the majority of things and if he has too much insulin on his pump, it’s his job to fix it. That means having a bigger snack or turning the basal insulin level off for an hour or so. He’s not stressed about it. He just handles it. I sometimes will step in during the day, but more at night if I see something, but his lows have decreased because he hasn’t gotten as high (weird effect), it was a pattern the doctor noticed. He likes being in charge. While things aren’t perfect, they are much, much better. It’s gone from low blood sugars 6 out of 7 nights a week to 2-3 low blood sugars at night per week.
Of course things still happen like pumps that aren’t working correctly and have to be changed or the heat making him have a high blood sugar. But it’s not as rollercoastery, because he needs to deal with the consequences of his actions. If his blood sugar is really high or really low HE has to fix things. He stopped putting in extra carb amounts to get his blood sugar down. He stopped fighting about his diabetes with me.
We recently had our telemedicine appointment. Our endocrinologist was happy. His Dexcom reading and his Omnipod Insulin pump readings (through Glooko) were a lot better. But more importantly, this did prove that my son can manage himself. I know this isn’t what we expected his life to be, but I think despite Type 1 Diabetes, my son can lead a very normal life.
And for the first time in a while, I am hopeful that he will be okay going away to college. We still have 4 years for this, but this is really the first time that I even considered that he could be okay. I am happy to give up the control if it means he can be in control of this.