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 perceptions 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 quite frustrating to try to explain to the well-meaning person that asks, “Is it stable yet?”, that no it is not, and nor will it ever be. The look of confusion and disbelief that you can’t be doing it right and they know ‘such-a-body’, down the road who’s child is ‘stable’. A strained laugh and a forced smile later, when you really just want to shake them and swap lives with them for 24 hours so they finally understand the hidden battle.
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 and 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, whilst looking perfectly calm on the surface and that you are doing 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 to do so is only isolating yourself I have found. Keeping it light and informative is my approach and the one that works best as far as I can see.
I want to educate because I know someone in my crowd will be affected eventually. Statistically, as T1D increases each year by 5% in children and continues to increase, 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 and would have validation of how tough it is in a weird way. It felt horrible and 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 to ever again be affected.
So what is the best way to stay positive and happy, because this 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 ensure it has its needs 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 in the rear at times, but we are capable. I focus on the amazing technology that we have to manage this complex disease 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 days that are challenging, he will never be alone, he is loved and we will always be there to help him.
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.
From my heart to yours
Claire
Mother of a child with T1D
