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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?
Lockdown Life is never ending. It’s been OVER a year, and while people keep telling us “I don’t know how you manage” – me neither. I don’t know how we’re doing this, really. I’m living it, and it feels impossible, and yet… here we are. There’s no choice in it, so onwards we go. I’m trying to find the silver lining, and todays was… I mean, if we’re relegated to the balcony, it’s nice that we have chairs now.
Officially, clinically extremely vulnerable people are able to come out of shielding in the UK, but knowing the government doesn’t prioritise disabled people, that we live in an incredibly ableist system, it’s not easy to trust that advice or guidance. Particularly when the letter basically said you no longer need to shield, but we suggest you engage in behaviours that look an awful lot like shielding, but it’s just guidance and all the support that helps you do that is removed. Okay then.
So we do what we always do, which is to read more and try inform ourselves best we can, weigh up our options, figure out how comfortable we are with different levels of risk… At this point we’re still sitting with it, because it’s hard… figuring out a plan and comfort levels, how do you define what is acceptable risk when the consequences are so dire? How do you balance quality of life and risk? How do we ask those questions of ourselves?
It’s a tricky one, there’s no right answer and to be honest, this has been an ongoing conversation all year and we’re tired. So, we sit with our questions, and we hang out on the balcony.
Still, he looks pretty cool, hey?
After the hospital appointment last week, we stopped in at Regents Park to eat our (home packed) lunch. There isn’t a safe place to eat near the hospital, no place to be socially distant and not worry about someone walking too close without a mask.
Regents Park is huge, and was on the way home so off we went.
It was nice to be outside, to be somewhere different. But to be honest, I was so highly strung. Anytime I caught sight of a person in my peripheral vision my entire body would go into high alert.
No one was wearing a mask (apparently people don’t feel the need to outside) and people weren’t really social distancing (and if they felt they had to pass you on a footpath, they would. Instead of waiting further back or crossing the road or any of those other things that require a bit more thought or effort).
So yeah, we sat outside and it was nice but I was too highly strung and anxious about strangers to really enjoy it.
But Mikaere, oh my days the joy. He enjoyed being out, he had his feet in the grass and the wind in his hair and ginormous grins with little happy chirps.
He was happy to be out, for sure, so I’m glad we took the opportunity when we did.
Because when I looked at the gov stats this morning, I saw this giant spike of positive cases. You can try minimise it all you want (and I’ve seen people try, using smaller numbers, or reducing to x per million, or it’s not in my area or trying to say it’s because testing capability has improved) but the long and short of it is that no matter which way you cut it, THOUSANDS of people in the UK are testing positive everyday. THOUSANDS of people have covid and are contagious.
We only need one person, just one, to be near us and we’re down the rabbit hole of doom.
Looking at that spike makes me feel ill. The risk for us is real. Like we were risky to go out, and sit in a park.
And the hard thing is no one else seems worried. Schools went back this week. Pubs are still open. Friends of mine are openly travelling (!) like it’s no big thing. And I get it, people are fatigued. But if the cost was death to someone you loved, would you go to a pub? Would you go get your hair cut? Would you get on a plane?
Please stay home. Please wear a mask. Please wash your hands with soap more than you think you should. The safety of our family relies on others like you doing your part.
We left the apartment, first time in over 120 days (17 weeks, or 4 months), thanks to some unavoidable in-person hospital appointments. It’s been a long, stressful morning, and I’m sitting in a waiting room by myself. Mikaere’s had a seizure seconds before he went in (why is it always so hot in waiting rooms?! Pretty sure the warmth triggered it) and I can hear Mikaere breathing, in the little haematology cubby. The nurse is giving Sam instructions, and I’m holding my breath waiting for the cry that’s certain to come when the nurse tries to takes my babies blood. This never gets easier.
It’s worse, with covid. This is the first time we’ve been outa and my anxiety is sky high… why aren’t people wearing masks?! Why wear a mask if it doesn’t cover your nose?! I’ve spent all morning screaming “GET AWAY FROM MY IMMUNE VULNERABLE CHILD!” in my head. Wear a mask. Even outside. Any time you might possibly come within a two metre range of people (like on a FOOTPATH) wear a mask! It’s not hard. You could be literally saving someone else’s life. Put another way – if you don’t wear a mask, you could be killing a vulnerable person, like my baby boy. You don’t know, you could have covid. You could be putting people like Mikaere at risk. Wear a damn mask!
Leaving was made easier because we were running late. The urgency to get in the car with all our gear made stepping out the door easier, and it wasn’t until there was a guy (without a mask!) arguing about our parking spot that my deep distrust of other people came to the fore.
I hate this. I hate being out here. There are so many people, and so many people who aren’t social distancing or wearing a mask who clearly have the privilege of health, of not worrying about if they get sick, who don’t care about other people. That is not us, and I worry. This doesn’t feel like a nice jaunt out, it feels scratchy, and uncomfortable and risky. I feel panicky anytime anyone comes remotely close to us.
But we’re here because we need to be. We have appointment after appointment (metabolic and bloods and orthotics and radiology) and they all needed to be done. We’ve crammed six months of appointments into one day, one visit, to reduce the risk.
Mikaere’s squeal pierces the silent waiting room and I find it hard not to cry. I hate this. I can hear that’s he’s miserable and I’m rooted my chair, I can feel his cries through my chest. God, this is awful.
There’s a pause. They’ve fucked it up, I know it. That cry was too short. I know he’s a hard stick, and he’s so much bigger and he wriggles more. I’m not wrong, and a few minutes later there’s another scream. He’s distraught and I’m sitting a whole room away. Oh god, I hate this. I hate that he’s in pain, that we’re causing this just “for to check” and just, fuck.
I hate that we’re in a world we were don’t feel safe. Where people aren’t wearing masks, and social distancing, where my baby has unavoidable hospital appointments and has had so many needles in his arms and hands and feet that his veins make it impossible to retrieve blood.
I am not loving the world right now. It seems cold and cruel. I’m crying. I hate that this is our reality. The special needs life can suck it so hard.