There are a great many things that I talk to my friends and family about. Happy things, sad things, memories, plans. The fact that we spent a whole hour recently trying to figure out what our 4 year old meant when he said he really liked “moon sex” (sorry, what?), until we finally realized that he was trying to say “moonsets”. “You know, like sunsets Mummy. Everyone always says sunsets are beautiful but I think moonsets are too, it’s just that nobody really notices them” (he’s cute). Or that our toddler has started taking random bites out of every piece of fruit in our fruit bowl and then rotating them so that we’re none the wiser.
Contact with loved ones is usually over FaceTime these days because, well, Covid, and often my weeks have catch-ups dotted here and there to help punctuate the never-ending sense of every day feeling rather like Groundhog Day at the moment. When these catch-ups happen, they always start with the usual “How are you? How are the kids?” And some days, I have absolutely no idea how to answer, because while we talk about all sorts of things, I somehow don’t really know what to say when it comes to T1D. Do I mention that we haven’t actually slept a full night in two years? Or do I gloss over the sleepless nights filled with late night dosing and dex failures? Do I share that I sometimes cry in the shower from the weight of it all? Or do I focus on the days filled with woodland hikes and dancing around the kitchen, because these conversations are so sacred to me that I don’t want to ruin them by bringing the mood down?
T1D, in many ways, has split our lives in two. On one hand, we’re a normal, happy family, with good days and bad days and a whole lot of love in between. On the other hand, life is sometimes harder than it would otherwise be without T1D. We don’t go to bed at night and (generally speaking) sleep until the morning. We can’t leave our kid with a sitter and enjoy date night without a second thought. And we know an unhealthy amount about which juice boxes are easy to get the straw into in the middle of the night, and which ones just sort of explode all over the bed <glances sideways at today’s laundry>.
I think when we talk about T1D, it’s easy to focus on raising awareness of early symptoms, or the need for a cure. It’s easy to talk about the practical challenges of this life, like the cost of insulin, the constant injections and the carb counting. And don’t get me wrong, these are all such important things to talk about. But what’s harder is talking about how wearing the constant arithmetic is. All the additional stuff we have to worry about. How much it hurts not to be able to make this better.
What I’m starting to realize, though, is how important it is to talk about the harder stuff with family and friends. As far as I can see, the importance of this is two-fold. On one hand, there’s the practical side to being more open, when it comes to things like:
1. Changing plans. I am a serial overcommitter. I have no idea what it is, but I am basically a total extrovert when making plans and a total (usually T1D-induced) introvert when it comes to executing them. Sometimes a midweek trip to a far-flung zoo sounds like a great idea in the moment, but when the day arrives, we haven’t slept in five nights and I find myself putting shampoo on my toothbrush instead of toothpaste, and then contemplating just rolling with it because we are just that tired. Letting people know your reasons for rescheduling, or pre-empting these situations by letting them into your world a little, helps friends and family understand why sometimes, plans might need to change. Perhaps to something more low key, or perhaps they just need to be moved to a different day. It means that rather than anyone taking things personally, they understand why some days you just can’t do it all, whether that’s because you’re physically exhausted or just completely burnt out. Not a single friend that I have explained our situation too has ever taken issue with what must be, quite frankly, a fairly annoying aspect of making plans with us. I’m careful not to cancel too often, but I now know that its okay to reschedule because it’s just been a total doozy of a week. No other reason needed. Bonus points because I can also show up to pretty much any event looking like this, and no-one will bat an eyelid:
2. Illness. Ah, the joyous issue of winter illness. Occasionally we’ll have a friend say something like “By the way, X threw up this morning, but he seems fine now – still up for a playdate?” and I have to find a polite way to excuse ourselves without sounding like a total germaphobe (which let’s be real here folks, I sort of am). Eventually I realized that it was better just to be honest and explain that with T1D, a stomach bug or a bad cold can quickly become something much more serious. Until you have been simultaneously on the phone to an on-call doctor trying to determine whether your kid needs to go to the ER, whilst trying to force a bit more juice into said (now oddly green-looking) kid in a last-ditch attempt to bring ketones down with insulin, it’s hard to understand how scary illness – and by association those ketones – can be as a T1 parent. Being honest about your worries helps people understand.
But then there’s also this: sometimes you just need to talk.
Everyone needs a shoulder to cry on sometimes. This life is hard, even without T1D. Kids are lovely and giggly and goofy and kind, but they’re also exhausting. They’re prone to a lot of meltdowns, and mine in particular are also prone to emptying our fridge of its contents and hiding bits of lettuce leaf in the (seemingly endless) dark corners of our house. T1D on top of that? It’s a lot. It’s hurts this Mama’s heart more days than not. Sometimes having a friend say “everything’s not fine, though, is it?”, or having someone look you in the eyes and tell you it’s going to be okay really can make a huge difference.
I think there’s something to be said for making yourself vulnerable. It helps you begin to process the “hard” that is inextricably muddled in with the “good”. It shows others that it’s okay to talk about sad or scary things too. It reminds you that life isn’t perfect, but that it can still be beautiful.
…as long as you find those lettuce leaves.
You’re strong. You’ve made it this far, and you’re still going. Just don’t forget that it’s okay to ask for help sometimes. It’s okay not to always be okay.