Getting out can be a huge faff. Sometimes we don’t manage it at all and Mikaere can spend days inside without leaving. Part of that is we have a limited amount of awake time to work with, which can be taken up by therapy. Sometimes he’s not up for it, sometimes there is too much going on and his nurse isn’t confident enough it take him out without us, and sometimes it’s just too dang hard to manage.
Which is just, a bit shit. It’s a bit shit. Cue Mama guilt because I really want to manage this, so he can go outside and enjoy not being in the same space for days on end. Life has gotten significantly harder now Mikaere isn’t a small, portable wee toddler. There’s a lot of prep work trying to figure out if a place has accessible paths or accessible door frames or step free access. Are we going to be out long enough that he’ll need changing? Is there a changing places facility where we can change him? It feels like a constant negotiation with the world, and a fight with the emotional/mental effort capacity that we have.
But is also means when we finally do go out (often somewhere local and accessible that we know) it feels like a win. It feels like a HUGE win! Because we want him to be able to enjoy all the things. But also, I hate that it’s like this. I hate that it’s hard.
Anyway. We made it out. We fed the birds leftover bread and hoofuckingrah! We did it!
