On the Heat

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Oh this HEAT! London is in a heatwave. We’re doing our best over here (cause increased heat usually means increased seizures) with fans and portable aircon, feets in paddling pools and mist from spray bottles and closing the curtains. It feels like we’re hunkering down, trapped inside (because outside is too hot, it’s just too hot rn). But this little guy is such a champ, he smiled through physio this morning, and is always up for a round of acoustic noise making, or smashing the space foil, or just laughing at his brother. He’s so patient and kind with us, I’m grateful.

We’re trying to make memories, but feeling like we can’t go anywhere is hard (constantly feeling like we’re not doing enough, while also knowing we’re doing the best we can. It’s not a competency thing, it’s a capacity thing). Still, I’m grateful he doesn’t seem to mind, and is happy to make memories at home.

We have some friends who are in tricky places right now, in PICUs and wards all over the country. It’s hard to see their messages, to both despair and love with them, to be overwhelmingly grateful that Mikaere is at home, and in great health and *happy* – I feels wildly unfair that others are in tricky places (while at the same time knowing we’ve been there, and are likely to be there again, at some point). So things right now are tempered, hugging my kids close, wishing I could do more, wishing my capacity was infinite (and equally knowing it’s not). Holding on tight to gratitude, with a bit of memory making on the side.

I guess that’s how this summer is going. How’s your summer shaking out??

On Getting Glasses

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Look at this sweet face! Someone got glasses. It’s been a long time in coming – a face to face ophthalmology meeting wasn’t ideal during covid. We talked about this already, in a previous post. About how everyone else was getting on with life as if it was all back to the regularly scheduled programming, as if covid wasn’t even a thing.

Well, part of that is ophthalmology requested a pair of new glasses for Mikaere. Aaaand then the spectacle dispensary ended up being closed on alternate days (because covid). After weeks of trying to get an appointment, we were told it was closing temporarily. (My silence at hearing this could easily have been translated into WTAF). Which meant that our alternatives were to take Mikaere out to Islington (a good hour in the car) or to go into a store (with all the people not wearing masks).

Awkwardly, we chose a specsavers that was close by. We had our voucher and I was hoping for easy and local and swift. We were all wearing masks (including Mikaere, who was also behind his rain cover) and honestly, I was super anxious about the whole deal. But, we lucked out. The first visit was a dream.

There was only one person in there, who helped us pick out and fit glasses. He was happy to chat and share when he last did a lateral flow test (that morning, it was negative). He was wearing a mask and we watched him sanitise his hands before coming over to us, stopping a socially distanced appropriate distance away. We tried on a few (which was hilarious and actually, a fun bright spot), ordered a pair and went on our merry way.

Picking up was less delightful. There were more people in the store, who weren’t wearing masks. One, particularly ableist lady made sure to tell me what the government guidance was on masks if your double vaccinated, after I asked her to move out of the way because she wasn’t wearing a mask, and I didn’t want to walk by her. 

My response was mostly a string of profanities. I’m not the most eloquent when I’m sleep deprived and scared for my kids health, but can I please repeat for you – just because you’re double vaccinated means you can STILL get Covid. You can STILL transmit it to others – like Mikaere. Who can’t be vaccinated. For whom Covid would be disastrous. Recognise that the UK government doesn’t care about vulnerable people and that whenever possible – PLEASE STILL WEAR A MASK! Please still socially distance!

I was shaking after. Honestly, some people are just awful. We were lucky though, because the optometrist was by contrast, an absolute delight. Yannick, he introduced himself to us, and to Kai specifically. He was double masked, volunteered his last test information, wore gloves and an apron. He even made a point to tell me he was sorry for that lady, that he understood, even before I explained how vulnerable Mikaere was. He went a long way to making me feel better about humanity – even after my display of less than articulate obscenities.

And afterwards, we were able to go home, with a new pair of glasses that fit.

I’m finding it really hard to manage in this new world, where every stranger feels unsafe, like they might be a risk to Mikaere. They might have Covid, and they might pass it on and just – he’s so vulnerable. So so vulnerable. Trying to balance to risk between something as simple as encountering people at a specsavers and Mikaere’s need for glasses is just – it feels impossible. The bigger view is that obviously I’m trying to keep my son safe in a world that is increasingly less safe for him. Relinquishing that idea of control – that I can keep him safe – feels unnacceptable (it’s my job as parent to keep my kid safe!) and I just… it just feels like another thing. Just one of those awful things that happens when you parent a disabled kid – the world is unsafe for them and you can’t protect them, and that heartbreaking impossible feeling is… its our everyday right now.

Hey ho. Onwards we go! Now with glasses!

On unnecessary, ableist pressure

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I’m over reiterating this, and frustrated that it’s a conversation we have to have again and again. For some, the UK is opening up and returning to some form of normality. For people like us who are vulnerable or protecting the vulnerable, we watch with envy because the world is not safe for us. People who aren’t at risk and don’t get it don’t wear masks, they aren’t willing to get vaccinated. They broke lockdown to have raves, and they pressure our nurses to break shielding and safety rules.
It’s frustrating to have to remind ourselves and others: we don’t want to be in this position, we HAVE to be in this position. We’re strict with our bubble for good reason. If Mikaere were to catch covid, it’s likely to be FATAL for him. The last time he got a cold that turned into a chest infection we were fighting to keep him out of ICU. The resulting seizures were devastating. He suffered. The last time he went into ICU, we also ended up on END OF LIFE CARE in hospice. Mikaere catching Covid would be an unmitigated disaster for our family.
We’re not unreasonable people, you know? Everyone in our bubble lives by the same rules. We haven’t been out in the world for non medical reasons in I can’t remember how long. We haven’t seen our family, friends, the inside of stores, people on pavements in A YEAR AND A HALF. Sam desperately wants to run outside for the ultramarathon he’s training for, that’s he’s had to cancel twice. His sisters just had a baby that we can’t meet. I desperately want to see my friends but can’t. Kai is missing out on 90% of his therapies because extending our bubble is too dangerous, and has literally lost skills because of it.
We’re not draconian gatekeepers though. If someone genuinely wanted to join our bubble, it’s possible. They just need to isolate, get a negative test and agree to the same conditions we live with. A handful of close family/friends have isolated to see us, sometimes taking annual leave. We’re grateful our loved ones are understanding and happy to see us in a manner that doesn’t endanger Mikaere or put him at risk.
Going the other way though, we’re strict about keeping Mikaere safe. If a friend isn’t able to isolate we don’t see them. If we thought for a second one of our nurses was engaging in risky behaviour, putting Mikaere at risk, we’d immediately remove them from the package. That’s hard, because we rely on our nurses to get through every single day. We can’t be everything Mikaere needs and have to trust them implicitly to keep him safe.
We have to be that strict, that sure. The world is unsafe for the vulnerable like Mikaere. It’s even clear in the data: since relaxing the rules, accessibility has reduced, the daily positive test numbers are going up, and they’ve doubled in the last week. Mikaere can’t be vaccinated and the risk is high. So we stay in. We don’t go out (even though we desperately want to) but it’s WORTH IT to keep Kai safe.
Having to remind people over and over that our rules are there for a reason? That our rules are not to be “fought” against because of some minor insecurity or lack of patience? Blah. If you have never had to consider the actual death of a person you care about as a very real, very literal and likely consequence of your actions, you’re living in a world of privilege that not everyone has. And that’s not an exaggeration. That’s our life.
I mean, could you look at that beautiful wee face and decide to make his world a less safe place? I’m just so frustrated you guys. Why do people not get it?

On the days following our A&E visit

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Mikaere’s been a bit flat since our a&e visit. Many hours sleeping, but he has some active/awake time. As It’s so warm, we’re out on the balcony for portions of the day, when he’s up for it, willing the breeze to blow our way. Warm weather is always bitter sweet for us, it’s delicious but the risk of seizures increases.
So we pulled out the cool blanket, the magic mat that’s filled with gel, so it’s cool to the touch. It lasts for about 15 minutes, and then you move to a new spot. It’s worked wonders to keep Mikaere cool.
We’re still not comfortable going out into the world, and the pictures of everyone else enjoying their break at the beach or in crowds of just, out an about with a bit of normality has me feeling very green. But onwards we go, enjoying the balcony, a bit of water in a tray, paddling pool static nonsense.
Onwards we go. Managed to get some smiles, even 🙂

On visiting the A&E

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It’s not the first time we’ve had to call an ambulance this year. It doesn’t get easier. The counting of the seizures, timing them, logging the presentation. After we give the second buccal, we’re meant to call an ambulance, but I don’t want to. Not really. I don’t fancy spending hours in a&e, holding down my boy for bloods. (That’s not why, though. The why is that I don’t want this to be beginning of the end, I don’t want this to be a deterioration, but I don’t let myself think those things. Instead I think about the uncomfortable chair and the boredom and the endless waiting and the child with the disorder so rare people just ‘pop in’ to introduce themselves and say hi).
So instead I call our critical care nurse, and let her convince me. She clears the way. When they arrive, the ambulance service already has Mikaere’s directive. We’re ready and waiting, and so we head right out.
Thanks to our nurse, the paeds A&E knows to expect us, which means we go right into Majors (it’s busy. The other two bays are already full with a broken ankle and a concussion. Usually they’re empty).
Triage is quick. Seizure frequency is up and drastically different from his baseline. We’ve given emergency meds twice and the seizures are still breaking through. We’re here for a review, and to rule out any acute indications that would mean a symptom stay.
The physical review is clear. No red flags. The bloods come back clear. Infection markers are low (so no infection). Everything looks fine.
At this point we’ve been in the a&e almost seven hours. The last four have been seizure free, and as there are no acute concerns, they’ll send a message to his neurodisability consultant to follow up, and they wave us out.
Grateful to be home. Hate seizures. Hate that this is happening with more regular frequency.
Hey ho. Life with NKH, hey?

On staying in, still

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Things are opening up here in the UK, and as always, I’m anxious. The world doesn’t feel safe for Mikaere. I want to trust in the vaccine (please get vaccinated if you can!) and hope that it does drastically slow transmission… but from the (ridiculous amount of) research I’ve read, it looks like the vaccine only reduces the risk of transmission (by between 25%-35%) but doesn’t STOP transmission. What it does is prevent you, a vaccinated person from experiencing severe symptoms.
Which is great, genuinely. Except that Kai wont be vaccinated (his first set of vaccinations put him on end of life care. We were living in intensive care/hospice for MONTHS). So, if the vaccine doesn’t stop transmission, Kai’s still at risk.
With the world opening back up and the CDC gettin frivolous with mask advice… the world just seems like a less safe place. I don’t know. I’m hopeful with reduced transmission rates thanks to increased vaccinated (ignoring the Indian variant) and with summer coming… perhaps it will be okay?
Perhaps in a few months positive cases would have dropped off (rather than the increase we had last week) and perhaps it’ll mutate itself into a less scary version and just… go away.  Obviously, we’re as keen as anyone to get back to normality, but the risk for our little family is so much higher than everyone else. It’s really hard, hey.
So, we’re doing what we can. Sensory foam play, with ducks. That brought a good 15 minutes of joy, I’ll take that.

On lunch in a park

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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.

Neverending Isolation

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This guy. So, I think we’re (touch wood) out of the last seizure war and into a place of relative calm (I say relative calm because he’s not seizure free, but it’s not the 20+ episodes with weird new presentations we were seeing before). We did lots to bring him out (mainly med adjustments for weight, and opened a new bottle of possibly oxidised oil), but as always its slow and takes time to kick in, and the recovery back to baseline is heartbreakingly slow. But there have been more smiles, and more awareness and more vocalisations (this kid has opinions!)

But. We’re still in this place. 25 weeks of isolation. Today is day 175. We’re still sleep deprived (getting up at 3am is not any easier 5 months later) and I still have all the anxiety about what’s safe for us.

Here’s what we know: the risk of Mikaere getting covid19 is worst case scenario (aaand we live the palliative care life, so worst case has a different, very real meaning for us). We know that covid is still rife outside our flat. Over 1k of people in the UK tested positive YESTERDAY. Last week over 9000 people died (400+ more than the week before).

Just, not fully knowing what needs to happen for us to be able to be safe outside is really doing my head in, because the honest truth is that it may never be safe. And if it’s never safe, then it becomes a balancing act between quality of life and the possible quality of death.

And the never leaving the apartment isn’t the kind of quality of life we want for Mikaere… but, the thought of taking the risk and going out, with the very real risk he might suffer unnecessarily/die is paralysing, you know?

I don’t know how to align those two things, and I’m all over the place about it. How do we provide the best possible life for Mikaere, considering the dangers? I’m struggling so hard, and I don’t have an answer.

I suspect this is even more difficult because in our little bubble we’re sleep deprived and without a wider perspective and without all our usual support (from our teams, therapists, groups, friends). It feels like we’re trying to make safety life/death decisions in the dark.

So. What would you do? Would you go out if the risk was death?

Isolation and Backsliding

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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!

Is it safe? Can we go outside yet?

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This photo is as much of the outside as we get right now, our little 1.5×3 balcony. As lockdown in the UK is easing significantly, I keep asking myself if it’s safe to rejoin the world yet. Is it safe is it safe is it safe?

Hairdressers are to open, as are cinemas and bingo halls and theme parks. Pubs and restaurants are opening indoor service. The UK gov has even given the go ahead for people isolating, like us, to return to normality (with social distancing) from August.

But what is social distancing? Apparently it’s two metres, except when you can’t do two metres, so one metre. Except no one is going to bother with that, are they? In shops or on footpaths or in any situation where it’s inconvenient.

The thing is, the government is all for opening everything up, but an open letter published in the British Medical Journal has said “available evidence indicates that local flare-ups are increasingly likely and a second wave a real risk”. It calls for a review, which among other things, should identify current weaknesses where “action is needed urgently to prevent further loss of life”.

It was signed by the presidents of the Royal Colleges of Surgeons, Nursing, Physicians, and GPs. The bodies of people who inform the government.

The other thing that gets up my grill, is that yesterday the prime minister, good old Boris, said he did not believe there was “a risk of a second peak of infections that might overwhelm the NHS”… can we take a moment to point out that his concern was for the NHS, and not for the many many lives that would be lost with a second peak?

Yesterday the number of additional deaths due to covid in the UK was 171. The number of additional confirmed cases was 874.

Hundreds of people are still dying everyday from covid. Hundreds more have a positive test result. And sure, it’s not the thousands that we saw in peak, but does that make it safe, for us?

Can we go out, for walk, to the supermarket, to appointments, and feel safe? Can Sam go back to work? Can I got meet friends for coffee? Is it safe is it safe is it safe?

How do we know that our baby boy isn’t going to be snatched away by a respiratory virus? How do we know we aren’t coming into contact with people who are asymptotic?

The tricky thing is, we obviously want to go outside. We want to be able to shop, and go for walks and see our therapists. We want to be able to sit in the park, and go visit Sams family and be able to go down the road and get a coffee. Made by a barista with the fancy machine, with milk FOAM and a take away croissant, and eat it at a table while watching all the people! (It’s been a very long time since we’ve been out and about).

Is it safe, is it safe, is it safe?

See, I don’t think it is. I don’t think the virus has been eliminated, I don’t think the numbers are down enough to make going out a negligible risk, and I don’t trust the government to make decisions that are best for us. In fact, in 95% sure the government is setting out policy that that puts the economy and ‘feel good news’ ahead of evidence and consultation with scientific bodies (in addition to being very clear: loss of life of the vulnerable is not high in their list of priorities).

I’ve read so many interviews with academics that all caution risk (example, Prof Stephen Griffin, who is a virologist at the University of Leeds was very clear, “we have not eliminated this virus or suppressed it to what I would say is a safe level.” The people who study viruses are very very clear, saying it’s not safe.

It’s not safe.

That in general, there are still so many local community level transmissions, most of which are unknown and not tracked because the system is not especially efficient (sure, they can know you had coffee with your sister day before yesterday, but can they track everyone that was on the bus you used to get there? And everyone those people have been in contact with?).

It’s not safe it’s not safe it’s not safe.

It’s not safe.

And I hate that. Because EVERYONE ELSE is out meeting their friends and family and being outside and enjoying the summer. Everyone else is making hair appointments and picking up BBQ makings and enjoying pitchers of Pimms, and walks in the parks and ice cream from ice cream trucks. They can browse supermarket aisles at their leisure and go shopping. They can be outside and go for walks.

And it would be so so so easy to join them. To trust the government and put Mikaere in his buggy and go for a WALK. OUTSIDE!! (The ecstasy of that statement requires the overuse of capitalisation).

But it’s not safe.

The other thing is that I don’t know for certain what “safe” is. Is elimination a realistic goal in the UK? The lack of community transitions? Significantly reduced transmission numbers? Is it when the scientific bodies say it’s safe?

I just want to be able to go outside and live our lives without the fear that our son will catch a virus that will kill him.

It also desperately makes me wish that we’d somehow magically managed to move to NZ, so we could be there. In a country where they’ve eliminated covid within the community, and the leadership are being decimated over the few cases they have (they have 32 positive cases. So few in fact, that their daily stats briefing shows you where they are, their age, sex and what flight they arrived on).

But we’re not there, we’re here. (It could be worse, I guess we could be in the USA, whose death rate surpasses every other country and is in the millions, whose peak is rising and yet is still opening everything back up because the economy > people’s lives).

But also, if we’re making wishes, I’d wish our baby boy didn’t have NKH. That NKH wasn’t even a thing that existed, and no one, ever, had to suffer under it’s influence. I’m fully aware that there’s about as much chance of that happening as there is me taking Kaikai for a meandering walk outside today.

Hey ho, onwards (in isolation!) we go.