This is the face Mikaere makes when he realises he’s spending the day with his nurse, and not with Mama. I think that face says so much, because it’s clear: with her he can do more, there is more fun and there is more attention (which is fine, because, that’s the point of a 1-1, right?)
We have a really generous package which allows for a significant amount of day/night help. Which we’re grateful for, absolutely. But also… there is that little kernel of guilt and sadness that, unlike a neurotypical family, we aren’t enough. As his parents we can not provide the round the clock care he needs (and we know, because we tried in that first lockdown, and it was awful for everyone). We literally don’t have it in us to be everything he needs, and when we try, it literally comes down to “how do we get through the next five minutes” (or ten minutes, hour, day…) and all the fun, all the engagement, all the therapy is lost, and his skills backslid. Also, knowing he’s palliative, and his life is limited, the quality of his life is really really important to us. And there was a significant drop because, bluntly, we didn’t have the capacity, and were running in the at minimum “keep him safe’ mode.
With the support of our nurses, fun for Mikaere has returned. Play, and therapy and just, intense the 1-1 attention that he needs to engage with the world (and needs, to keep him safe) – all of that is possible in a way it wasn’t before.
We’re also grateful that because of the sacrifices our nurses have made, isolating like us, in the extreme, we’ve been able to have them join our bubble. Without their willingness to separate from their friends and family (and walks and shops and everything else) we wouldn’t be able to accept their support. We’re so so grateful for our team.
So yes. That face. Worth it, hey?