So it happened. The unthinkable, gut-wrenching, heart-breaking desperately unfair diagnosis that you weren’t prepared for. Could not be prepared for even if you had known it was coming. And you survived it. You gained knowledge about the tech. You learned a new language centred around medical terms. You tried every way you knew to succeed because failure came at too high a cost. It wasn’t enough to meet the needs you were meeting before. There was a new need. An important one. One you couldn’t afford to mess up.
And maybe you were able, in among that, to allow room for some of what was going on for you. Maybe you were supported, maybe you’ve never felt so alone. Maybe both. Did you grieve your loss? The loss of that innocent, easier future you’d built up for your child? The loss of being able to put them to bed without worrying? The loss of being carefree instead of careworn?
Because it is a loss. A huge one. Yes, your child is lucky. They were diagnosed before the worst happened. They have some of the best healthcare in the world, where we don’t have to worry about whether the life saving medicine they need will be available. And those are good things to acknowledge and be grateful for, but it can still sometimes feel like you lost.
Because the bit afterwards sometimes doesn’t feel any easier. Yes, you become better with the tech and the terminology, but for me it has never become normal. It’s more usual, yes. It’s more routine and I sometimes even feel confident in what I’m doing, but it will never be normal because normal is what it should have been. It’s the life my child should have had and doesn’t. It’s fundamentally unfair and hurtful.
But we are able to access support. WhatsApp groups spring up like flowers and your healthcare professionals should be able to point you in the direction of these. Facebook groups contain a wealth of knowledge and support and remind us that there are others going through the same kinds of things.
Because finding people who understand our loss can help us bear it. One of the reasons I decided to specialise in this field is because I couldn’t find anyone who I could talk to without coming armed with explanations of what everything meant. I couldn’t just say I was exhausted because the Dexcom kept alarming. I had to say what that was and what it meant before I felt understood. And so the space for me became smaller and more crowded. I felt it was another thing the diagnosis took from me. And I wanted to push back a bit.
You’ve got this. You’re doing the things you need to do. But sometimes it doesn’t feel like you have it. And sometimes you don’t want to do those things. And sometimes you just need your space back. So be kind to yourself and let it happen. However you choose to do it.