Are we adjusting?
Have we found our “new normal?”
Are we settled yet?
The question is asked in a lot of different ways, but essentially mean the same thing. Have things settled down so life feels normal again… have we settled into a routine?
It shocked me how early this question was asked of me. Only weeks after diagnosis, everywhere we went people would ask me if we’d adjusted to our “new normal,” but at that point, life still felt anything but normal. Back then, we were giving Ada several shots per day and she would cry daily. Her blood sugars were all over the place, and there were times we would have to physically drag her out of bed to check her blood sugar overnight. Every party, activity, and new meal brought with it a new anxiety, wondering if we were dosing her correctly; when we dosed too low it would mean more shots for our poor girl and when we dosed too high, we’d have to stuff her with more carbs.
Nowadays I think it is a fair question to ask. After all, we look settled. Ada is thriving and healthier than ever. We manage very well, and that’s apparent from the outside. I know the question is meant as a compliment, an acknowledgment of all we’ve achieved over the last several months. It is always asked from a caring, loving place which I so appreciate. And really, it’s a simple question, but I still find it a hard one to answer.
Some days the answer is yes. Some days I wake up well rested after a night with no Dexcom alarms going off, and sometimes I may even get a couple weeks of fairly sound sleep. Some days her ratios, basal rate, and correction factors are all working perfectly and I might not even look at her numbers that often during the day.
I am also used to new routines like getting up early so I can fix a protein-rich breakfast instead of throwing cereal in a bowl. I usually have my freezer stocked with some backup meals for busy nights, meals that are predictable in how it affects Ada’s blood glucose levels. I use grocery pickup services to save myself time, to make up for some of the extra time I need to meal prep. We pretty much never order a pizza or have a boxed meal; it’s rarely worth it. But those changes are routine at this point. In that respect we are definitely settled.
Furthermore, we feel more confident in our ability to keep Ada safe. We don’t worry about lows like we used to. We act swiftly when necessary, but we do not feel like we are a heartbeat away from an emergency situation like we used to. We are able to travel, and have several trips coming up. We know they will not be easy with all the meals out and extra activity, but we aren’t going to let that stop us. Every new experience is a learning experience, and we have to treat it as such.
Some days the answer is still no, not yet. Some days Ada is sick, or fighting off an illness that she never has symptoms for… except for crazy numbers. Apart from illness, she is also constantly growing, so we are constantly having to adjust her basal rates and carb ratios. It seems like just when we think we’ve got it down, her insulin needs change. And as much as we try to keep things predictable, every party, meal out or food lacking nutrition information has the potential to throw everything off.
Take last night, she had just a tiny snack, but she didn’t pre-bolus, so she shot up to 300 in no time. Because at that high number she becomes insulin resistant, I was up every 20-30 minutes until 2 am trying to get her blood sugar back down. So today, the answer is no, I don’t feel settled.
While we were on vacation, we all got hit with a terrible virus. That is an awful situation for any family, but I found myself mentally calculating whether Ada was safe where we were. If she were to go into DKA, not every hospital is equipped to deal with it, and a children’s hospital was hours away. Thankfully, we didn’t need a hospital, but I definitely didn’t feel settled then either.
When Ada’s pump failed a day early and it meant that the next pump change would fall on Christmas day, I felt far from settled. To not be able to shield my daughter from a painful medical procedure on Christmas Day… it is a helpless feeling.
I watch my other two like a hawk. Miles took forever to get over the illness he contracted over Christmas. He just seemed fatigued for weeks, and it set off alarm bells. Cora is a tiny pipsqueak, and has put on less than two pounds in the last year. Sometimes I get really anxious about it, but I choose not to focus on that emotion; It is a fine line to walk advocating for my children while simultaneously putting my trust in God to care for them.
Sometimes I feel settled, but most of the time, I don’t feel like that’s the best term to describe our life. Type 1 Diabetes just isn’t a disease that lets you rest; something is always changing. I may not feel settled often, but I do feel grateful for Ada’s health… always. I feel anxious and overwhelmed sometimes, but more than that I feel hopeful for what’s next. Sleep deprived would be a fair description far too often. I feel confident that we are providing Ada with the best care possible, but it also takes a lot more work than I expected.
The simplest answer is no, but I am hopeful that will change one day. The technology is improving all the time, and every change will bring us closer to feeling settled, and more importantly, bring Ada closer to feeling like any other normal kid. One day, we will be pros, and know how to bolus for pizza, fries, cake… all the “culprit” foods, and we won’t give it a second thought. One day, Ada will be older, and not cry with every pump or Dexcom change.
For now, “Are we settled yet?” is still a complicated question. “How can I pray for you and your family?” or “Can I bring you a coffee?” are much easier questions to answer.