When you’re a parent to a disabled kid with a terminal disorder… there’s a thing that happens. Which is to say, you go all in on making sure your child has absolutely everything they need. You’re fighting for more, for better, for understanding, for care plans and therapy and a better quality of life and for memories… you’re trying to be the mama and the advocate, the nurse, physio, coordinator, therapist etc etc and it’s a lot, this person you need to become to do all the things for your baby. I became the best Mama I can be for Mikaere. For a long time it felt like we were just getting through each day and juggling as best we could – and seven years later, same, really. But what people don’t share is how much of your identity you lose in becoming this super human parent version of yourself. (You know you’re there if people are saying “I don’t know how you do it” or “you’re so strong/amazing/[insert adjective].”)
Here’s the thing. I didn’t know how integral it was to hold on to something that was just for me.
I gave up my career to take care of Mikaere, and I don’t regret it for an instant. I stopped adventuring because there was no way Mikaere would be able to come. I stopped going to the theatre and to events and threw myself into parenting. This is what Mums to disabled kids do – they become all encompassing medical Mamas.
So here. This is me in Austria last week, on this most amazing snow trip. Because I’m more than a medical Mama, and because I DIDN’T KNOW. I didn’t know how much I needed something for me. How I would cry when I got back on the snow. How I could be both Mikaere’s Mama with all the complex medical juggling *and* just Elly. I think it’s easy to lose yourself, and who you are when supporting a child with a terminal disability and I’ve never seen other medical mamas take any time for themselves. I’m grateful I had the moment to reconnect with who I was outside of parenting, and I know it’s a privilege to be able to do this, and yet I worry if I don’t take the time now, when our boy gains his wings I’ll be lost without him. And I don’t want that, I don’t want to be lost, I want to be able to adventure for the both of us x
