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.
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?
We’re struggling. Without our giant team of therapists and nurses and all the many many people in our home who help us help Mikaere… we’re operating at a completely different level to pre-covid. The bar is much lower. Trying to get stretching and physio and therapy in…
Bluntly, it’s not happening, and I can see Mikaere’s development backslide as a result. It’s heartbreaking, and managing the guilt of we’re doing our best and knowing that our best isn’t good enough… because it can’t be. Two people can not replace the team we had. We’re trying to be everything and… we can’t. We can’t be night nurses and physios and SALTS and CCNs and OTs and vision therapists. That list doesn’t even include the fun groups, the social sensory time, or swimming or yoga or horse riding. Trying to find the mental capacity during the day to get in the basics of stretching and the physio and the equipment… it’s not happening.
We pulled out the walker today. The idea is not for him to walk, but to spend some time in a different, upright position, feeling weight through his legs and ankles. It’s been a while.
He spent a good five minutes of the fifteen he was in it not wanting to put his feet down. He’s miles away from where he was, and just… it’s hard.
Quality of life wise we’re doing our best, but how do we calculate risk/reward in this case? The risk of allowing people into our bubble? Most of the UK has normalised living with Covid. But when the risk for us is death? How do we normalise that? Is that risk, his death, worth allowing our team in to help support us support Mikaere? To give him a better quality of life? In NZ, our family is a vicarious no, because they’ve normalised life without Covid. In the UK, our friends shrug and ask what would need to happen for us to open our doors, and he’s terminal anyway, so shouldn’t we bet on quality over quantity?
I’m torn and I’m scared and I don’t have the right answers. I don’t know what the right answer is. How long can we keep living in isolation like this? It’s been months and months and months.
I can’t help but feel like there is no right answer, and either way we’re failing Mikaere. On the up side we found out it costs half a million pounds to hire a private plan to fly us to NZ. Where we could be safe. Anyone have a half mill handy they want to donate to our covid-safe migration? 🤣 I wish!
Every morning with this one, when it’s quiet. The suns just coming up and London is quiet. No cars or helicopters or pedistrians. It’s cool (thank goodness), and quiet.
It’s in these early moments I wonder what kind of day we’re going to have. Will there be smiles today? Will he be awake and alert and want to play? Will there be Seizures? Vomits? Recovery naps that span hours and hours and hours?
I don’t know, yet. Right now he’s still sleeping, still cuddled in close and he’s peaceful.
Today is meant to be less hot (hopefully!), though we’ve been managing quite well with the heat (thanks for all the suggestions re: a cool mat. We were lucky, a very kind neighbour ran down to our local and picked one up. They’re magic, aren’t they?) but we’re all done being uncomfortable and sticky. We’ll see.
Another day in isolation (were Day 152 today). Onwards we go.
Another warm day, another day of seizures and struggle. He has both a portable ac unit and a fan pointed at him. He’s lying on the floor because it’s 1.4 degrees cooler than the couch, or a chair. I love the warmer weather, but not when it causes seizures. They’re happening every few hours. Just long enough for a recovery nap and some minor awake/aware time before another one hits. Blah.
Seizures are the thief of everything, and I hate them. They take away so much. At this point, what kind of quality of life is this? Seizing and recovering, not moving, no joy.
This is what NKH looks like. Seizures because it’s warm. The brain damage that’s happening in my little guys brain because of a tiny tiny mutation which fucks up a large chunk of his carbon folate metabolic system….
Living the super special needs life atm. We’re one of many, our story is standard, not exceptional. But that doesn’t make it any less heartbreaking 🙁
Today’s been a whole day. Of seizures and vomits and screaming and unhappiness and this face, this face that says so clearly he’s feeling sorry for himself? Yeah. That’s our today.
The shit thing is that this is our status quo. And I’m torn, I’m torn between pulling back the curtain and feeling vulnerable so you can see our reality, or resisting the pull to put some kind of positive slant on it or whether I should just delete this post because to be honest, today is a hard day. It’s one hard day of many hard days, because that’s just how life with NKH goes.
It’s hard for us to continuously share the hard things. It’s hard for us to then manage other people’s sadness at our hardship. It’s hard to navigate all the feels, because at the heart of it, no one wishes we weren’t living the NKH life more than we do (watching our son suffer and not being able do anything is our own special kind of living hell).
And I could, I could paint this with the positive brush. Of what we’re grateful for and focusing on the positives, but I don’t want to diminish this… this is our reality and I don’t want to positive-pretended make it palatable for others consumption.
So, honesty then. Today’s a hard today. And honestly, I’ve never hated NKH more.
#nonketotichyperglycinemia #specialneedslife #seizuressuck #nkhcansuckit #itiswhatitis #hardday #seriouslywherearethecustarddonoughts
