After getting vaccinated, isolating, and having negative covid tests, Mikaeres grandparents came down for a visit. Mikaere loves his grandparents, when they walked through the door he got very vocal, and there were smiles.
He loved the cuddles, and oh! The IN PERSON stories instead of on the iPad! So good. It’s been sixteen months since we’ve seen them last, and we’re grateful that they were able to come and see us all.
The things we’ve missed, hey?
We needed a small win today, something easy and interactive and joyous, but easily implemented because #lockdownLife is still a thing. So messy play it was! Beans and lentils, things that feel lumpy under little fingers, on a tray that makes a good sound when you bang it, and beans that bounce and make a good noise when they’re flung to the floor. It’s the kind of thing Mikaere enjoys – it takes a little bit of effort for him, moving his arms, especially when he can’t necessarily *see* the things he’s flinging, but, I mean…. they went everywhere. He was so joyous about it, too. The sound they made hitting the floor. Satisfying, for him.
Also, I’ll deny him nothing – if a moment of happiness for him is making a massive mess? No big deal sweeping up beans, it’s fine. Sure, it was a good half hour of sweeping and banging and laughing, so worth the tidying after. It’s the small things, hey?
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?
Mikaere has outgrown his stander. We have a walker, but it’s difficult to get him to weight bear in it, and still keep his body in alignment. It’s much easier to practice freestanding with gaiters (to keep his knees locked) and AFOs (to stop his weak-never-has-to-weight-bear ankles from collapsing). The downside is that it requires two people to support him upright in this way, so when Sam has a gap at work and Mikaere’s in a good place, we do a moment of therapy. We dance to some tunes, and wiggle our hips and raise our arms and move our bodies.
It’s not the hour in the stander the physio wants, but it’s fifteen minutes or so of actual standing, transferring weight and proper uprightness. I’ll take it. We do what we can.