Tag

#teamMikaere

Jul 27
0

On the The Online Charity Pub Quiz

By | #teammikaere | No Comments

TLDR: Quiz was a raging success. We’re extending the quiz slightly for the next week for those who couldn’t make it – for a £5 donation, if you can correctly guess the movies and characters from the picture rounds, we’ll put you in the draw to win a surprise, silly, light hearted prize.  Photos under the post!

Donate here:  http://paypal.me/teamMikaere
Draw will be made on Friday 31st.
Rules: Open world wide. Add your answers in the note (please also untick the goods and services box, else the transaction fee will come from your donation).  Donations will be matched, so please dig deep!

Additional side notes: #5 – any of the movies he appears in is fine. It’s hard to know exactly which film this image is from!

———

WELL! I don’t even know where to start – the online pub quiz was a raging success!! Tony and Tess did a PHENOMENAL job of running our quiz. The rounds were hilarious, some questions were easy, others were more difficult (we’re rubbish at quizzes, so I was pleased to be able to answer some of them – though I found the music round to be particularly entertaining!)

There was an NKH round which, if I’m honest, I struggled with. I did a bit of a spiel and honestly, I hate doing the spiel. We do it because spreading the word about NKH and the realities of it is important, but oh. Telling people your kid has a terminal disorder, and is likely to die and lives a really grim reality is emotionally hard. I’ve been doing the spiel for over three years now, and each time I get teary. It’s important that people know, but oh. It’s so hard.

We’re grateful that people are kind, afterwards so many people sent a lot of lovely messages sending their love and support. It sounds really stupid, but making ourselves vulnerable, and opening ourselves up – even at just a quiz – it’s really really personal to us.

I had to take a mini break mid quiz after the spiel, it’s been a long time since I’ve had to say out loud, to an audience what life with NKH is like. Listing symptoms and average death ages and just – just how limited life with NKH is. We try so hard to put a positive spin on things, because how else do you live with the day to day of grim? But peeling all that back and being truly honest,  it cuts down all the defence mechanisms I’ve put in place to manage.

But, like I said, we have hope (and I hold so hard to that hope it’s ridiculous). In research, and a gene therapy cure and that one day our reality will be a thing of the past for families like ours, because life with NKH WON’T EXIST.  There will be an EFFECTIVE TREATMENT! (I’m getting shouty, because the idea that kids won’t need to suffer seizures and developmental delay and be severely disabled and die because of NKH is HUGE)

Which is why I do the spiel, even though it’s hard. Because the hope and the dream is worth it.

I’m grateful for Tony and Tess smoothing over my emotional moment with grace and kindness, acknowledging the hard and gently guiding the tone of the quiz back to fun and light while not taking away from the purpose. Honestly, they’re such pros.

And YOU GUYS! We raised £1880, which will be matched, thanks to Tony’s employer.

But we think we can raise a smidgen more (the NKH cure dream is strong, you guys). So we’re opening up the Picture Round for everyone who couldn’t make it on the night.

for a £5 donation, if you can correctly guess the movies and characters from the picture rounds, we’ll put you in the draw to win a surprise, silly, light hearted prize.

Donate here:  http://paypal.me/teamMikaere
Draw will be made on Friday 31st.
Rules: Open world wide. Add your answers in the note (please also untick the goods and services box, else the transaction fee will come from your donation).  Donations will be matched, so please dig deep!

Additional side notes: #5 – any of the movies he appears in is fine. It’s hard to know exactly which film this image is from!

Side note: if you’d like to donate and not play, thats okay too. If you’d like to donate more than £5, or less, we’re grateful for any contribution!

Please get involved, we’d love to hit the £2500 mark.

Again, thank you to everyone who came to the quiz. We had 37 teams from all over – in NZ, the US, the Netherlands, Scotland, England. It was mind blowing. To everyone who donated and sent messages and was so clearly on Team Mikaere. We love you guys. We couldn’t live this life without your support x

This slideshow requires JavaScript.

How to play:

  1. Make a donation to: http://paypal.me/teamMikaere
  2. In the notes name the movie and character!
  3. (Surprise, silly and light hearted) prize drawn 31 July
Jul 03
0

Lets Get Quizzical – Online Charity Quiz!

By | #teammikaere | No Comments

 

I’d thought I’d talk about the seizures. They’re awful, and they come with so much helplessness/guilt/fear, but my heart today is not up for it. I don’t want to talk about stupid seizures and how they steal everything and how I hate them (and NKH, so so so much!)

So I’m going to do what I always do when things look bleak, which is to say oh hey, fancy helping us fund a cure for NKH by coming to an (online) charity quiz?? (Please come!)

A lot of our fundraising events have been cancelled this year, for obvious reasons (2020, wtf?). We’re gutted, not because of the lost donations (though that hurts), but because usually our fundraising events are an opportunity to hang out and connect with people who care about the same things we do. Isolation, it’s a whole crazy thing. We really miss hanging out with people, and that lack of in person social support has really taken its toll.

So, together with the amazing Tony and Tess, we’re doing the Charity Quiz ONLINE  from the comfort of your living room. Which basically means, wherever you are, you should come join us for the quiz.

It’s on Friday 24 July, 8pm BST (check what that means in your time zone at World Time Buddy). You’ll need a laptop/tablet (ideally with a webcam so we can see you!). Buuut I figure if you’re seeing this, you’re probably a technology literate person.

We’re asking for suggested £10 donation per person (although that’s a suggestion, you’re welcome to donate more, or less if £10 is a stretch!) and you can sign up at: http://teammikaere.com/blog/campaigns/lets-get-quizzical-2020-nkh-charity-quiz/

How it works:

  • Download the Zoom app to your phone or go to the site on your laptop: www.zoom.us and create a free account if you don’t already have one.
  • You’ll need pen, paper, snacks and a drink!
  • Your team can be just you, or everyone in your household
  • You’ll be emailed a link to a google spreadsheet to add your team name, and the zoom link.
  • 8:00pm to get everyone online. Questions will start at 8:15pm!
  • We’ll do 5ish rounds, keeping it light.
  • There will be spot prizes and a grand prize, but we’re operating on honesty, so please don’t google the answers!

At playtime:

  • Add your name to the google spreadsheet tab (spreadsheet link will be emailed to you!)
  • You’ll need to score yourself, and add your points to tab 2.

Anyone can join, the more the merrier! Invite your friends, spread the word. There will also be silly spot prizes, and an NKH round and generally fun times all round.

All funds, as always will go to Joseph’s Goal, who in turn fund Prof. Nick Greene at UCL and his team of NKH Researchers.

Please come join us, it’ll be a great night. There will even be a Mikaere-in-costume movie round, which you’ll DEFINITELY want to see.

Also, being surrounded by people who aren’t this minute being besieged by grief and seizures and the downside of living the special needs life will do my heart some good. We’ll take as many positive and upbeat moments as we can.

So, Friday 24 July? See you there?

Jun 24
0

Is it safe? Can we go outside yet?

By | #teammikaere | No Comments

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.

Jun 15
1

On Isolation

By | #teammikaere | No Comments

Hi hi! Gosh, it’s been a while. We’ve been in isolation since mid-March (today is day 99 in isolation). I know our radio silence has bothered some people (thanks for checking in!) but we’re safe and sound.

We decided to take a step back from social media. Isolation has been quite tricky for us. Sam and I are both incredibly sleep deprived – we don’t have the privilege of our night nurses (we miss them!). Sam and I are sleeping in shifts (I get to sleep 10pm – 3am and a nap at lunch) but the risk of having people in and out of our home isn’t worth Mikaere’s health. Children his age with similar health needs have died, and next to that what’s 99 days (and counting!) in our little apartment?

Social media during this time has been really really intense. It hasn’t been the usual positive connection with the world. It’s become a platform for opinions we don’t share (#blackLivesMatter not #allLivesMatter, and it’s not #justTheFlu. We’ve unfollowed a significant number of accounts as a result) and watching others trade authenticity for glossy perfection #blessed highlight reels is the opposite of why we’re here.

We treasure genuine connection – sharing our reality in a way that’s authentic. We share a tiny segment of our reality, the ups and down, and this little break has really emphasised what kind of relationship we want to have with everyone here.

So I’m glad we stepped back, but I’m sorry to have worried so many of you! (Again, thanks for checking in, you guys are the best). But while we’re struggling, we’re doing okay. We’re safe.

Honestly, it hasn’t been an easy ride. If I’m being really honest, I’m still angry that we live the special needs life. That it’s riskier for us to be out and about than it is everyone else. That other kids get to go run around the park once a day, and we do little tours around our tiny apartment again and again and again. That others can go out without worrying whether their child will catch something that might kill them. Blah.

Isolation has mostly been a matter of keeping on keeping on. We’re very much about just getting through each day, and keeping our little guy entertained. Some days there’s therapy, a lot of days there isn’t. Sometimes there are fun sensory games with paint and shaving foam and ice cubes in a tray of warm water, sometimes Mikaere’s on the floor with a balloon and we call it good.

We’re managing. Our pharmacy delivers, as does our supermarket. We have a wonderful group of local friends who have been really great about supplying the gaps. For all the people asking, yes my hair has grown. I am no longer bald and have a respectable if unkempt pixie. Sam’s able to work from home (a privilege, I know!) and bar one unexpected a&e visit (oh seizures) we’ve been able to stay in.

Because here’s what I know: as long as we’re in our apartment and the rest of the world is outside, we’re safe.

We’re also in a position where we don’t trust that the government advice is whats best for our family. Our current government has shown repeatedly that they value the economy over the vulnerable, elderly and disabled. That they’re okay to risk their lives for everyone else, and we’re not okay with that. Every medical report that’s been released has been clear that lockdown is easing too soon, and we agree. So despite ‘shielding rules’ allowing outside walks – we’re not going out. And I know we’re not the only special needs family doing the same.

With schools coming back, and unessential shops opening, we’re going to continue to isolate for a few more weeks until we can see that the danger of a second peak has passed. Got my fingers crossed that a second peak doesn’t happen – I can’t tell you how much we miss the outside world.

Until then, what have we missed? How are you? What news???

Mar 16
0

Covid-19 and Self Isolation

By | #teammikaere | No Comments

So, we’re self isolating in the light of Coronavirus. Sam is working from the spare room, all appointments have been cancelled, all nurse support has been put on hold for the next week or two, and we’re staying in. Just us three.

For us, Mikaere’s respiratory health is a priority. When he gets poorly his o2 sats drop, his heart rate goes up and he has more frequent seizures. When he got rhinovirus we lived on the ward of our local hospital for weeks until I could convince them that he was safer at home (we have all the equipment they have on the ward at home, without the hospital super bugs). But with Coronavirus? If he got it, and needed ventilation, that wouldn’t be ICU for us. Instead that would mean hospice on end of life care. Because Mikaere’s emergency care plan, as set out by us and his palliative care team has said that if he needs ventilation, that’s too extreme a step.
So you can bet we’re self isolating. When your son is the vulnerable camp, you be as risk averse as you possibly can, we’re not risking health. We’re being safe, as safe as we can be.

So here we go! Self isolation. Hope you’re all well and safe!
#nonketotichyperglycinemia #nkhcansuckit #specialneedslife #nkhawareness #coronavirusuk #cureforNKH

Mar 04
0

On the Chicken Nugget Challenge!

By | #teammikaere | No Comments

Well. That was A LOT harder than most people thought!! Originally we set it up because we wanted to do a challenge that was a bit more inclusive. Our last one was running, which isn’t everyones bag. It’s also London based, which isn’t ideal.  The chicken nugget challenge seemed like such a good idea!!

And it was, until I hit the 30th nugget and wasn’t interested in eating anymore. You guys – 30 nuggets is A LOT of nuggets. That we’d even asked people to eat 50 just seemed ridiculous. (Having looked into in the run up, I saw that people had eaten 50, but didn’t take into account how difficult it was).

We had 23 people join in, 9 teams, across two different countries in 5 different cities/towns. We collectively raised over £2500 for NKH Research!

Well done us! Proof:

If you want to donate, you can at: https://www.justgiving.com/team/nkhchickennuggetchallenge

Again, thank you to everyone who took in the challenge. THANK YOU to everyone who donated and sent kind words. You guys are the best, and we’re grateful!!

——

A bit about NKH and where all our funds go:

We’re raising money for NKH Research. Nonketotic Hyperglycinemea (NKH) is a rare and terminal metabolic disorder that affects children. It means they can’t process glycine, which is a neurotransmitter. Toxic levels of glycine cause the neurones to overfire and die, causing brain damage.

This is shown as seizures, severe global developmental delay (delays in physical, intellectual and social development), low tone, causes children to be severely disabled.

Joseph’s Goal supports Prof Nick Greene at UCL in London, who is working on gene replacement therapy – a treatment which would radically improve the quality of life of kids with NKH.

Because NKH is so rare and is funded by families, every single penny helps. Every single pound raised has a tangible effect on what can be done. The funds raised by families last year sped up research by 18 months – this is significant, when 80% of children with NKH don’t see their first birthday.

We support Joseph’s Goal specifically because they are the only NKH charity supporting Prof Nick Greene, who we genuinely believe is the closest to a clinical trial, and therefore an effective treatment for Mikaere.

Mar 02
0

On the Head Shave

By | Dear Kai | No Comments

WELL.  We hit £5,000 in our fundraiser, here: www.justgiving.com/gareth-shave

So it was bound to happen, this head shaving business. I was nervous to begin with (because seriously: people have very strong ideas and gender norms/stereotypes around women and hair – I know this because several people tried to convince me NOT to shave my head – shame on them!) and I wasn’t sure how I would feel about shaving my hair. If I’m completely honest, I was mostly nervous about what my husband would think!

I hadn’t cut my hair since Feb 2014. It was long – mermaid length. Gareth, six foot ginger ninja stopped cutting his hair in 2015, back when he became a nomad. He has beautifully long, curly, red hair that makes him look a bit homeless when he doesn’t style it.

We agreed, one night over beers, that if we raised a certain amount for NKH Research, we’d shave it all off. Turns out our thresholds were quite low!

1. If we reached £1500, Elly and Gareth would both get number 2’s

2. If we reached £3000, Elly and Gareth would use razors, and be completely, 100% bald up top. (This turned out to be impossible, so we listened to the advice of the barbers and used the closest clippers we could possibly get).

3. If we reached £5000, Gareth would ALSO shave off his beard. Woah buddy!

Gareth and I did it together.  We donated all our locks to charity, so they can be donated into wigs (thats nice) and we held hands as our heads were shaved. Oh. My. Days!

I was unprepared for how freeing it would feel, and actually, how nice having your head shaved is (like a head massage, but nicer!)  Afterwards, my head was cold (I felt every single draft, even in a room with all the windows closed!) but I was surprised at how much I LOVED it! It feels incredibly tactile, and I can’t stop touching it.

So here we go – shaved head.  Thanks to everyone who donated, who cheered us on while we did it. Thank you to my partner in crime – Gareth – for shaving off his hair + beard with me, and for organising the barber from Flame and Steel (flamesteel.co.uk), who very kindly donated his time. I’m grateful! Thank you to every single person who donated.  Genuinely, thank you.

And I know I say it all the time – this thanking business – but I genuinely am. I’m beyond desperate for a cure for Mikaere. His seizures are daily. His vomits are awful. His quality of life is not even close to what we enjoy. When I go to bed at night, I’m not 100% sure that everything will be fine in the morning. That Mikaere will be with us, that he’ll be happy and able to move through his day. We live with uncertainty and grief and THE ONLY solution, the only long term, positive solution is research.

I have all my hope in the research. That it might, in Mikaere’s lifetime, be able to help him live a better life.

So with that desperation in mind, every donation feels personal. It brings us closer to a future with our kid, so yeah. Super personal. So THANK YOU again for all the support and love and donations.

If you’d like to donate – we’d love to have your support: https://www.justgiving.com/gareth-shave

So yes. Shaved our heads. Done!

 

Feb 13
0

On meeting Deepmind

By | #teammikaere | No Comments

Earlier this month I was invited to speak at Deepmind. It all came about in a roundabout way, because I was having coffee with a friend. She’s the best kind of friend. I don’t see her very often, but she’s that kind of person who can see the depth, acknowledge that things are hard and my heart hurts, but also move on and talk about lighter things, and things that are happening in her life. She doesn’t shy away from the hard and doesn’t let the hard weigh down everything else and I appreciate that.

She was talking about her work, and how for some, it’s hard to understand the real world effect of what they’re doing, which makes it hard to understand their purpose. Their why.

They’re all up in the code and the science, she said. When I asked what it was they were working on, she said ‘protein-folding’

I took a moment, just a beat, before I pointed at Mikaere. His entire disorder is because of protein folding.

Truth: it’s actually about protein misfolding.

———

Science sidenote: Your genes create little recipes, and your body, following these recipes creates protein chains of ingredients (amino acids). This protein chain folds in a particular way, and off it goes into your body to be used.

But, Mikaere has two little missense mutations. Which means that in his recipe, there are two wrong ingredients. These wrong ingredients go into the protein chain and cause the way it folds to be different – it misfolds – meaning it can’t be used.

Kind of like, if you have a recipe for cake, and instead of sugar you put in salt. The cake can’t do its job of being delicious.

Mikaere’s mutations mean in his little GLDC protein recipe, seriene is substituted with leucine and glutamine is substituted with lysine. So, when his body builds out this recipe chain of amino acids, the protein misfolds, and the protein can’t do it’s job in the glycine cleavage system.

Protein misfolding. It’s a thing.

——-

When I said it, I could see something had clicked with my friend. Suddenly her day to day of high level theoretical science had a very real world meaning. AlphaFold – an AI system used to predict protein structure and how they fold – meant so much more with what it might be able to do in the future.

Which is how I found myself earlier this week at Deepmind. I’d organised to have Prof. Nick Greene (from UCL, he heads up one of the very few NKH Research teams) be there too, because I was positive there would be some intense science related interest I wouldn’t be able to talk to. (I was right).

Deepmind, they are so lovely. I was in a room with some very very smart people, and while our story was more the reality of NKH and protein misfolding, when Prof. Nick spoke about the Science (capital s, lots of big words), you could see the cogs turning. There were a lot of interesting science questions (which were well over my head) but that so many people were thinking about the multiple aspects of glycine related metabolism, that was exciting for me.

Even more exciting was hearing about the interesting things Prof. Nick is working on. YOU GUYS, the research that we’re fundraising has such a huge effect, and while I’m not privy to share (Prof. Nick is writing the paper now, so hopefully it won’t be too long before it’s out) I was really really excited about the real world applications, and what that might mean for kids with NKH in the future. Things are HAPPENING, Prof. Nick is learning so much about NKH and glycine and just – I have so so much hope. So much hope!

I was grateful to share our story with Deepmind. I’d gone in with the intention to share our story (because we want Mikaere to be known) but I hope I touched a chord. I’m hopeful that one day AlphaFold will be used to aid scientific discovery in rare disorders like NKH.

Also, sometimes it’s just a privilege to be able to share with people who have influence over things like this. I think AlphaFold is going to be huge for the rare disease science community.

So yes. Thank you Deepmind for having us!

 

Feb 07
0

On the NKH Community

By | #teammikaere | No Comments

The thing with NKH being so rare is that we don’t get to hang out that much. There was a group hang out in the UK up north towards the end of last year, which was beautiful and so emotionally out there. It was a delight to see everyone (I even got cuddles with some of the other kids, which was such a privilege! Antonia, my heart!) but also – I felt the gaps. The kids I missed and were still grieving.

Still, we chatted and caught up and cheered the milestones and discussed meds and therapy and equipment. We talked about what people were struggling with and had some quiet moments with tears.  There was also the unexpected delight that I was in a whole room of people who knew how to look after Mikaere. Do you know how rare that is? Being able to pop to the loo, or have a conversation without being hyper vigilant, because there are at least three other people also hanging out nearby?

There was also a video group chat last month, organised by Kristen (from NKH Crusaders).  I was the only one from the UK who called in, but honestly – it was so nice to chat and talk and just – be with people who understand.

In both cases, the call + the meet up, it such an emotional balm. Because they were a safe places,  I could ask those questions I’m wrangling with.

Like – seriously. How do you deal with grief and loss? How are we meant to SURVIVE this?! There are parents who have 7, 10, 15 YEARS of living with NKH under their belts – HOW ARE THEY DOING THAT?! Because honestly, that our current life might last that long seems overwhelming and impossible. That Mikaere might die, and we won’t reach that long is downright inconceivable.

The notes I took after both are disjointed and all over the place: “Focus on the good, focus on the day to day.” and “The stress doesn’t go away. The same old same old, the story doesn’t change, but when our day to day is still a challenge, that’s hard. “ or “It’s hard, there’s always loss. Grief is devastating. “ and  “We still have the thoughts, the negative fears, and then the hope. The hope lives everyday.”

And the thing is – all those notes are high level, it-is-what-it-is type statements. They’re living the same life we are, with the hard and the grief. What I’m struggling with is that I don’t think there is anything I can do to relieve the pressure of palliative, special needs life.  I think we feel the pain, and onwards we go because there is no other choice. There is no way out but through it. We love our children, and our children have NKH and it is what it is.

Maybe that’s my problem. I’m looking for a fix, I’m looking for a way to relieve this discomfort, this phase of life. Because thats what we’re taught, right? If you are unhappy with a facet of your life, it’s up to you to make change. It’s up to you to learn more, do more, make change to better yourself. Pull yourself up by your bootstraps, work your way upwards. Do the work: be in a better position. We reward that kind of ‘go-get-em’ stereotype.

But what if there isn’t a way to ‘fix’ the discomfort? What if the end goal isn’t change and growth, but to endure?

Even typing that makes me uncomfortable. It makes me squirm, because I don’t want to live in perpetually in grief. I don’t want to endure the stress of the special needs life, or the stress of my baby dying. Would it feel less awful if I stopped trying to fix the unfixable?

But, in the same vein, I don’t know how to accept the unacceptable.

It was easier to manage when the conversation moved on to research (apparently mice in sterile areas are getting infections they shouldn’t?) and then onto fundraising. I feel like I was talking to the pros of NKH fundraising. We do what we can (you know we’re branching out a bit more now we’re doing things like the hair shaving + the NKH Chicken Nugget Challenge).

To be honest, with each event I feel if we can raise £100, £500, £1000 pounds, every single bits helps. Every single pound makes me feel like doing I’m something, helping change our lot towards something positive. It’s not the $20k fundraisers some of the others are doing (how do they do that?!), but we’re doing the best we can. The thing is, fundraising makes me feel like we’re moving forward towards something. We’re making a difference. If I can raise £5 – that’s everything.

So yes, here’s to wonderful company with our tribe. Oh NKH community – we love you, and we’re so grateful for you. It’s such a comfort to know we’re not alone. That we’re not the only ones thinking the hard thoughts and feeling the fears. <3

Left to right:
Daisy’s Dairy with NKH, Team Mikaere, Joesph’s Goal, Jack’s Journey + the amazing Doms!
This isn’t everyone who came, but only the segment where some of us managed to line up.

Feb 05
0

On ANOTHER nursery update

By | #teammikaere | No Comments

The complex needs panel. Woah. Buddy.  Where do I even start? The local authority is it’s own special maze. After chasing when the panel was (which felt like a mission. Our educational psychologist, the person who is the family contact through this process left. We were allocated a new one, but weren’t told who they were. We weren’t even told the old one had left, and heard through the therapy grape vine. Ironically that’s also how we found out about our new person, who had mentioned someone else about an aspect of our case!)

Anyway, we had a date. Finally. I showed up early, and nervous.

I walked into the panel room with Mikaere. It was a meeting room, with a big square table. There were ten people sitting across the three sides, leaving one side for the two of us. Intimidating af.

They introduced themselves to one, one at a time. There was the panel chair, that days health rep and social rep. Three people from Lovely School (the head teacher, the early years teacher and the head of therapy), and then a mix of other people on the panel (a parent rep, our educational psychologist and a few more people whose names and titles and what they did flew over my head).

It was intimidating, but I’m lucky in that there was a friendly face I knew there, so that was positive.  After a lot of talk about what the current package was, how it wasn’t appropriate for Mikaere was debated (and agreed) there was more discussion about what kind of package *would* be appropriate for us.

Here is what it comes down to:

  • They’re giving us 15 hours (which is split across three hours, five days a week). Knowing that there is no way he’d be able to manage, we’re fine to use, say only 9 hours if we want to. The idea is that we should be able to build up to 15 hours.
  • If he’s not there full time, we shouldn’t rely on the therapy through school, and it should stay with the community team until he is at 15 hours a week.
  • That means that he needs extra funding to cover equipment.
  • Also, they want someone to work with him 1-1. A nurse to cover seizure care + the blended diet.

That was all fine.

What was not fine is that because none of this was sorted before the school year, there is now no space at Lovely School that is suitable for Mikaere.

So we have to wait till NEXT September.

Lovely School has exactly eight spaces in their early years class. If you double that, for the afternoon/morning sessions, that’s sixteen. Total. Sixteen special needs toddlers is all they can accommodate.

Considering there is only one other special needs school in our borough, with a similar allocation, that means there is only 32 special needs toddlers between the ages of 3-5 who get to go to nursery a year in my borough.

WTF.

I spoke the the Head Teacher, who was due to open a second early years class for this academic year, and it was scrapped due to funding and lack of teachers. Ahhhhhhhhh.

This. Our system is so underfunded in the world of the vulnerable and special needs. I don’t know what to do about it. I emailed the director of education standards and inclusion in my borough, who sent back a vague but noncommittal email. I emailed our MP, and our local newspaper, both of which went silent. What else do I do? Where do I take this? Do I go lobby and advocate and make a generally nuisance of myself until someone listens? Till they fund a second class so my son can go to nursery?

The thought makes me tired (and guilty. Like I should be doing everything and more).

It bothers me, because after taking on the fight for getting a package that is SAFE for Mikaere, there is no resource. If he was neurotypical, this wouldn’t be a problem. There are nursery’s left, right and centre offering 15 hour places. But that there are only 32 places in Wandsworth for special needs toddlers… what am I meant to do?

So. I guess we wait till next September, and work with our special needs playgroups until late 2020. I’m not 100% sure how I feel about that.