A short video and an honest reflection on what it really feels like to parent a child with Type 1 diabetes, from someone living it every day.
"Is It Stable Yet?": The Question I Hear at Every School Pick-Up
Quite often, people are curious and ask me questions, usually at school pick-ups when I'm waiting to collect my child. It can be tricky to educate others without overwhelming them with the actual truth. The truth being it can be HARD and EXHAUSTING. No, like, really exhausting. I haven't been able to find the perfect balance yet between the light-hearted conversations people are looking for, and my own desire to educate them that it is not just "take the insulin and we're all done now".
I think I struggle the most with other people's perception that it is all quite simple. I mean, I understand why. I too was blissfully unaware before T1D picked us to set up camp in our lives. It can feel frustrating to try to explain to the well-meaning person who asks, "Is it stable yet?", that no, it is not, and nor will it ever be. The look of confusion and disbelief on their face, the inevitable mention of so-and-so down the road whose child is "stable". A strained laugh and a forced smile later, when really you want to shake them and swap lives for 24 hours so they finally understand the hidden battle.
The Swan in the Lake: Looking Calm, Working Hard Underneath
I often feel like the swan in the lake amongst the other parents. Laughing, joking, chatting, and really, underneath the water, I'm working so hard to stay afloat, to keep it all together for the sake of my child.
No one can see that bit. The checking of blood sugar on my watch, wondering if my child is about to start charging around the playground like an Olympic athlete and might need a snack to prevent the inevitable hypo. The constant inner dialogue and checking and more checking, while looking perfectly calm on the surface, like everything is just fine. I hide it well, because how else do you cope with it? People do not want to be brought on board with your struggles, and trying to do so just leaves you more isolated. Keeping it light and informative is my approach, and the one that works best, as far as I can see.
When Someone Else's Child Is Diagnosed
I want to educate because I know someone in my crowd will be affected eventually. Statistically, as T1D continues to rise in children year on year, someone I know will be affected. Indeed, it happened just recently, and I was unprepared for how it would impact me emotionally.
I always naively thought I would feel less alone, that I would have some validation of how tough it is, in a weird way. It felt horrible. I was very upset that someone else's child I knew would be having the same battle as my own. I wanted to take it all away for them, just as I want to remove it from my own child's life. I was validated that T1D is tougher than others knew, but it wasn't a good feeling. I would instead prefer no other child ever to be affected.
How We Stay Positive: T1D Just Comes Along for the Ride
So what is the best way to stay positive and happy? Because that is crucial to enjoying your life, right? For me, T1D just has to come along for the ride. We feed it, burp it and look after it to make sure its needs are met, but that's it. It is dealt with and we try not to focus on it. We put baby in the corner.
Yes, it can be a giant pain at times, but we are capable. I focus on the amazing technology we have to manage this complex condition, and I focus on how resilient and funny my child is. If my child is happy and thriving, we can do this. I tell him, on the days that are challenging, that he will never be alone. He is loved, and we will always be there to help him.
What T1D Has Taught Us
T1D takes time and energy, but it also teaches you resilience and helps you find meaningful support. It shows you who loves you and who is there for you when you need them. It puts things into perspective and teaches you what is important in your life. For this, I am grateful.
Don't get me wrong, if I could cure T1D I would do so in a heartbeat. But until the cure is found, we will be living our best lives and not letting it stop us.
If you want to read more honest reflections on T1D life, our posts on Diabetes Awareness Month and how to support someone with Type 1 diabetes are companion reads. And if you want to know the story that started Smile Sensors itself, it begins here.
From my heart to yours.
Claire
Mother of a child with T1D
