Just shy of two years in, and some days I still don’t quite know how to explain this whole thing to you. You woke up to me changing out your infusion set in the dead of the night the other day, bleary eyed and confused. When I tried to shush you back to sleep, your little chin wobbled and in the quietest of quiet voices you asked, “Mummy, are you going to let me die?”. I’d taken off your pump, you see, and you knew you needed insulin to survive.
As you so often say to me, little one, “oof”. I did not see that one coming, but especially not at 3am on this particular Monday morning, as I fumbled with tubing and needles. How long have you been wondering that? Do you just get scared in the night like I do, or is this something that’s been playing on your mind for a while now?
“Oh sweetie, of course not!” I said at the time, with a level of upbeat cheer in my voice that I definitely didn’t feel. “I would never, ever, ever let that happen.”
I didn’t know what else to say. This is not a conversation I ever pictured having to have with my four year old, and four days later your question is still ringing in my ears and weighing heavy on my heart, just as it did when I climbed into bed with you that night to cuddle the scary stuff away. For both of us.
In the days since, I’ve thought a lot about what I wish I had said to you that night at 3am, had my brain not been addled with sleep, and, truthfully, had my eyes not been swimming with tears.
I wish I’d said I’ll always be here: Facing a disease with so many ups and downs, and so many unknowns, I wish I’d reminded you that I will always be a constant. That no matter how old you are, or where you end up, you can always ring us and ask to come home so that we can take care of your blood sugars for a while. A day. A week. A month. Whatever you need, for however long you need it. I wish I’d let you know that no matter what time of day or night it is, you can always call with questions or worries, just as I hope you will to tell us of your good days, and the things that make your heart happy.
I wish I’d told you that it’s okay to be scared. Everyone is scared about one thing or another. It doesn’t matter whether you’re young, or old, brave or not, everyone gets scared. I once met a dude who was terrified of buttons and flat out loathed zippers (can we all just pause here a second to think of his poor Mum trying to get that school uniform set up sorted?). Your tall, strong, very much on top of things Papa is absolutely terrified of spiders, and I wish I could say that I’m totally indifferent to house centipedes, but we all know who’s screaming out for your Dad every time one insists on darkening our home with its presence. Being scared of things is normal – healthy even – it’s what you do with those fears that matters.
I wish I’d told you that I was glad you’d told me how you were feeling. In life, it’s so easy to squish down all the big feelings because you don’t know even know where to begin, or what the point of talking about things is. For the longest time after you were diagnosed, I’d finish basically every answer to “How are things going?” with “…but, you know, it is what it is.” I used to feel that because no-one could change the situation, there was no point talking about it. But sometimes just talking things through is enough. Just as there is joy to be found in sharing happy moments, there is hope to be found in sharing the sad ones, too.
I wish I’d told you that insulin is just another thing on a long list of things people need to stay healthy. Just as we need water, food, or sleep to keep our bodies going, we need insulin too. That’s all it is. Nothing to be scared about.
I wish I‘d let you know that I worry sometimes, too. Not specifically about your T1D, because I think we can all agree that freaking you out any further on that front would probably not be my strongest move, but about everything. Life can be really scary sometimes. Change is hard. Health is….I don’t even know what health is. Confusing. Big people worry just like little people and this big person gets pretty worried pretty often. But my boy, that is okay because we have people we can talk to. People who will listen, and people who can help.
I wish I’d reminded you that we’re in this together. Right now, that looks like dancing around the room with you when you conquer putting on your own infusion set, or whispering “swallow!” over and over like a crazy person at 2am as you chew your candy slower than anyone has ever chewed anything in their life. It looks like talking to the school nurse three times every day while you’re at school (pretty sure she and I will be BFFs at some point soon), and scouring the Internet with you on a mission to find the very coolest of space stickers for your Dex. It doesn’t matter what I have to do, I will do it. And I will do it as well as I possibly can. We’re in this together, and I’m not going anywhere. I really hope you know that.
But most of all? I wish I’d told you that you’ve got this. All of this aside, I wish I’d let you know that you are the strongest little human I know. With your silly jokes and endless kindness and laughing eyes, you have not let this disease get in the way of a single thing you want to do. You wear your Dex like a badge of honor, and I hope you always will. I am so proud of you, little one. So proud I could burst.
So there we are. What I wish I’d said that night at 3am. And am I saying all these things to him now? I am. As we walk through the fields or throw sticks in the river. As we bake cookies and gasp for air on the hammock after a particularly exhausting game of tag in the garden. And I will keep saying them, for as long as I need to. Because this kid is everything to me, just as his brother is too. And I think – I know – we’re going to be okay.