On Getting Glasses

By | #teammikaere | No Comments

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 Charlie

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Ta da! Please, exclaim all about the glory that is this BEAUTIFUL COVER! I’m so chuffed you guys, the book is so beautiful. I’m really really excited about getting this Charlie book sorted and out the door!!

We’re hoping to have it ready for ordering at the end of November, and behind the scenes it’s a lot of back and forth with Zoë (the amazing illustrator, of @zoeellison fame), locking down ISBN’s, wrangling the basics up to Amazon and IngramSparks (both systems could definitely use some dedicated UX love!)

I’ve also sent out the bulk of the translation spreadsheets this week. So far we’ve had volunteers cover: French, Italian, Hebrew, Finnish, Turkish, Dutch, Filipino, Polish, Spanish, Welsh, Irish Gaelic, Icelandic, German and Brazilian Portuguese. I’m so grateful to everyone who has reached out, and either finished their translations or are part way through.

If you’re interested in translating Charlie into a language not listed above, I’d love to hear from you. You can sign up at: https://forms.gle/Vt4V2NjeGKojWN93A #linkInBio

Keep an eye out, hopefully (fingers crossed, may ALL THE POWERS THAT BE allow it) the next announcement will be that it’s available for order! Mark it in your calendars – Nov 30th, it’s happening! 

#CharlieTheCrow #booksForCharity #BooksForWednesdays #BehindTheScenes #translatorsNeeded #nkhAwareness #sensoryBook

Mikaere’s 5th Birthday Fundraiser

By | #teammikaere, Food for thought | No Comments

Over the last week we’ve raised over £1,600 for NKH Research for Mikaere’s Birthday. Just – wow. Thank you, to everyone who donated, who shared and invited and commented, we’re grateful. Genuinely, we are.

It feels pretty overwhelming, but when it comes down to it I’m glad you’re all here. That Mikaere is known, and loved. This might be his last birthday, or we might have years, we don’t know. The not knowing is hard, trying to parallel plan (which is just a bs medical term, because how are you meant to plan for your kids death, really?). We’re in an in between, of knowing it’s coming, but really not wanting it to, and trying to enjoy every day we have until then. The urgency is both less, because it’s been years, but also more, because every day that passes is another day closer. It’s very cognitively dissonant place to be – but I guess that’s the life as a parent of a disabled child with the rare and terminal metabolic disorder?

Obviously my hope is that we raise enough to fund a cure that can be pushed to medical trials, so that NKH is not even a thing any more. Because how great would that be, a world WITHOUT NKH?! It’s a long term, slim chance kind of hope, but I’m clinging to it (wouldn’t you, too?)

So thank you for your donations and your love. We’re so grateful. We love you x

https://www.facebook.com/donate/1487154294979095/

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disability #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #covid #fundACureForNKHInsteadOfGoingToSpace #grateful #HappyBirthdayLittleMan

On the Pinkies

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This post is tangentially related to Mikaere, so excuse the round about narrative. This here is my oldest friend. Liz. She’s literally the most beautiful person. When we were teens she put herself in harms way to stop me from fleeing from (imagined) warthogs and I ran full tilt into her. When I moved to London, she was one of the first to reach out and helped me navigate the tube (though she laughed at me when I got the lines mixed up). When she left London, I missed her terribly. She came back to be a bridesmaid at my wedding, which meant pushing back her own plans. She’s supported I think every major fundraiser we’ve ever done for NKH. She recorded a video of her reading a story to Kaikai, you know? She’s an amazing friend, is what I’m trying to say.

Liz is also a breast cancer survivor. I’m so grateful, so so so grateful that she is now (and may she always) be cancer free. She wasn’t quiet about it. It was very f*ck cancer and check your breasts, ladies! She worked with Look Good, Feel Better NZ when she was in recovery – sharing her story to support and encourage others in similar positions. They put her face on a Mazda, and honestly, it was the most amazing thing.

She also joined at dragon boating team, one for breast cancer survivors. They paddle in pink. And if you know Liz, you know how ambitious she is with her sports. How much she likes to win, and how much she’ll work, determined to put her best foot forward for her team.

There’s clearly a story to be told here, and a film was made. The Pinkies are BACK! The trailer is hilarious – these women who have lived through breast cancer are amazing, yes. But they’re also just relatable women, who make fun of themselves and each other. It’s mostly only available in NZ, EXCEPT there is a virtual screening.

And here’s the thing – while the NZ screenings support cancer charities, Liz was very clear that with the virtual screening she wanted to support us, and raise money for Joseph’s Goal. For Mikaere. For NKH Research.

It makes me teary to think about, if I’m honest. It makes me feel so seen, and it’s not a “despite her own story” type thing. I think its more we’ve both faced unexpected hardships – different as they are. And we get it. I’m so grateful for Liz, and for her friendship. For her generosity.

So, you’ll join us? For a virtual screening of what is guaranteed to be a great movie. Seriously – watch the trailer at: https://www.youtube.com/watch?v=04p8si7gAYY and tell me you didn’t laugh. At a time of a global pandemic, we could all use a bit of feel good entertainment.

October 30th 2021 – 7pm UK time. It’s USD$10 a ticket (that’s about £7.40), of which half will go to Joseph’s Goal.

Tickets available at: www.fanforcetv.com/programs/pinkies #linkInBio

Please join us – you can view from anywhere and it’s going to be a great one.

#myfriendsAreBetterThanYourFriends #ThePinkiesAreBack #pinkies #fuckCancer #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #nkhcansuckit #someoneFundACure #complexmedicalneeds

On the Love

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A friend asked me the other day, genuinely, how we managed our life with Mikaere. With disability and hardship, and grief. The the truth is, literally, because we love him. Because first we are parents who love their child. And when it’s put that way, everything else – while hard – is irrelevant. We love him. So we meet his needs (which perhaps need a bit more accommodating). We take care of him, and we worry about him and we love him.

Just like any other parent.

That doesn’t make it less hard, but I think people focus on the hardships. On the heartbreak that is having a kid with disabilities. On the grief of walking a path that you didn’t expect to. On watching your child be in pain, and suffer hardships. On having to say goodbye sooner than you would like.

No one chooses this path for their child. No one wants to watch their child suffer (and to clarify – not all children with disabilities suffer. Disability does not equal suffering. But Mikaere has seizures, every day. Which are painful, and awful and I’d class that as suffering).  No one chooses to have a child with a life limiting disorder. No one chooses  the palliative life for their children.

Please don’t @ me with your feelings. About how sorry you are, and how you can’t possibly imagine, and how strong we must be. Please, no, with the platitudes. This post is not about your feelings. It’s about sharing mine.

The truth is that as much as there is hardship, there is also joy. And smiles and happiness and belly laughs. There is a lot of love. So much love. No one tells you, when you get a diagnosis, about the love. They tell you about the doom and gloom, the worst case scenario. They preach the medical model, which is that disability is awful, and terrible and they’re so sorry.

They don’t tell you about the love.

And that’s the reason that it’s so hard. Because we love. If we didn’t love, it wouldn’t hurt. It wouldn’t be grief. And don’t our kids deserve all the love?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #nkhcansuckit #someoneFundACure #disabledparenting #disabledfamily #complexmedicalneeds

Meet Charlie

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I’d like to share a project we’ve been working on. Introducing Charlie.  Charlie is the protagonist of the next charity children’s book. Eva was *such* a success, it seemed like a good idea to add another book to the line up.

I’ve been working these last few months with Zoe Ëllison,

who is an illustrator – that’s right, no more will you need to suffer my amateur illustration skills. Instead, Charlie is *beautifully* illustrated by a *real illustrator* (much excitement and dancing, because Zoe is AMAZING!)

You guys, meet Charlie.

Charlie is a crow, who is super good at honking (and who doesn’t love a good honk, hey?) Except… the other crows make fun of Charlie (boo!). So Charlie goes on an adventure to find other birds who sound like him. It’s pretty cool. A book about gently accepting differences – being different is okay.

The other super cool part is that this book has been designed as a sensory book. Sure, the book up front is exactly as you’d expect, pictures and words and a story. Buuuut the back half is full of suggestions for how to experience the story with your other senses. There are AAC symbols, and cut outs so our CVI friends can isolate each bird, there is a link to audio cues so you can hear each bird call, and there suggestions for things you can touch, or smell or feel. Inclusivity for our disabled friends with sensory or learning differences – it’s important.

So here’s my ask.  Eva was translated into so many different languages by volunteers (THANK YOU!) and I’m positive that’s why Eva has been so successful and raised as much money for NKH research as she has.  Would you be willing to help translate the Charlie book into a language you speak natively? It’s approximately 1250 words all up. All languages welcome, and you’d get translation credit.

But here’s the thing – last time I put all the words into a google spreadsheet, made it public and let everyone go to town. Some rascal altered some of the translations into naughty words. We caught it before the books could go to print, but it’s meant a lot of work on our part.

If you’d like to help translate the book, or triple check a translation to make sure the meanings are accurate (and that there are no naughty words!) please fill out this form here:

https://forms.gle/Vt4V2NjeGKojWN93A 

I’ll email you back with your very own spreadsheet (if you want to translate, or a copy of a translation if you want to check). That way we know who you are, and hopefully no rascals will interfere this time.

I’m so excited for this book. As before, every single penny from the sale of these books will go to directly to Joseph’s Goal, for NKH Research.

NKH – were coming for you. We’ll fund a cure one way or another.

On the changing table

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Speaking of equipment, we got this behemoth changing table put into our bathroom. It’s great, in that the bathroom has a hoist and we can now hoist Mikaere from the changing table to the bath. That changing him is significantly easier and all in all, it’s a huge improvement over the bathroom floor.

It’s just – it’s so big. The installer didn’t quite install it all the way over, and so it’s difficult to slide in and out of the room when the table is down. We also had drama with him wanting to do the electrics – so while you can plug it in to the mains to move it up and down to an appropriate height… you have to do that with the door open. It’s so frustrating.

At this point we’ve been too busy to chase the small details – so live with it unplugged. But honestly, I wish the installer had just done what he was meant to do, and had done it properly. It’s so hard not being able to trust people do things right, you know? And now we’re in a position where we have to pay to have everything sorted out.

Still, not changing Mikaere on the floor is a win, so I guess we’re mostly in the positive?

#greatChangingTable #stupidInstaller #disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh

On a Useless Hoist

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We have this stupid portable hoist in our living room. It’s not long enough to actually be of use (it fits over Kai’s bed, and then literally just the half metre next to it). We used it initially getting him in and out of his crib, when we had the crib, but now he’s got his bed it’s just… it’s not a good fit.

We’re still waiting for a ceiling track to be put in

I can’t wait to get rid of it, honestly. It doesn’t belong to us, it’s from the council. So I have to organise to have mediquip come and dismantle/pick it up. But to do that, they need to come in. And with cover, I’m not keen. So we have the big giant (but not giant enough) hoist was just sitting there, not being used.

SO, I’ve pulled it out and now we use it as thing to hangs toys from. It’s huge, and silly but also, kind of fun? It’s definitely not what it’s meant to be used for.  Hey ho, we’re making it work for us!

#stupidHoist #disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh

On Ophthalmology

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As everyone here in London is just Getting On With Life as if cover wasn’t a thing, there was pressure to take Mikaere into his Ophthalmology appointment. You can’t really do ophthalmology over zoom, and it’s been two years so… yes. With much anxiety and mask wearing (even Mikaere) we went and saw his ophthalmologist.

Mikaere has CVI (cortical vision impairment). We know that. It’s not clear what he can see, what connections are getting through to his brain. There’s also an issue with the tone of the muscles around his eyes, which means one eye floats in a bit (it’s called strabismus). We also found out this time that his eyes are oval shaped – called astigmatism. That’s not NKH related, as Sam has that too. Mikaere is also long sighted. So it’s all a bit complicated, but mostly fine.

The lovely ophthalmologist looked at Mikaere’s eyes, and shone various lights and made some decisions. Mikaere thought it was generally hilarious, and was very cheeky, holding still just long enough for her to almost get her readings, and then turning away with a laugh (he thinks he’s hilarious!)

Anyway, the short of it is Mikaere’s getting glasses. Again. He actually had glasses briefly almost two years ago, but after a while he refused to wear them. The ophthalmologist then said it’s likely that his eyes changed shape and the script was likely off. He was right, I guess.

But awkwardly because of Covid, the spectacle dispensing office was closed, and so we need to wait for another appointment to have a fitting.

Still, I feel like it was good to go, and novel for Mikaere to be out and about and meet people outside our bubble (!)  I guess stay tuned for the glasses reveal?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #spectacles #strabismus #astigmatism #eyeCare

On School Transitions

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One of the changes that happens now is Mikaere’s therapy is done at school. Where I am not, which means I can’t be there to advocate for him. This here is Mikaere in his stander at school. This is not the stander we trialled at home. It doesn’t have head support he needs, or support behind his elbows. You can see how his chin tilts up, which is problem, because then secretions pool in the back of his throat which means more gagging and vomits and breathing difficulties. I can’t see where the strap is, in regards to his tube – is it rubbing? Is it accessible? I can’t see how he’s moving in it. Is he comfortable? Is he extending against the straps? Is anything rubbing? How is his feet? Are they turned out? I can see it’s not the superman pose we set up at home (because it’s better for hip abduction). And I’m so frustrated. So frustrated that this was done without me.

Because of course it’s now all going to be done without me. He’s at school now. I’ve been told repeatedly that his independence is important, for us and for him, and that letting him have that is necessary.

The tug here is that I genuinely feel like no matter how great his team is (and they are great), they are not as great as me. They don’t know him as well, they don’t know about NKH as well as I do, they’re not able to anticipate like I do, and they are not his parents.

There is also this frustration that if his time is limited, he’s spending it with people who aren’t his family. With people who aren’t US. They are getting all his awake moments, all the beautiful interaction and fun. And we get the tired Mikaere, who is so exhausted after school that he sleeps.

I’m struggling with this transition. There are (obviously) benefits (for us and him) that he goes to school and we get daily respite, but it’s not a black and white situation. I don’t know how to advocate for him when I can’t see what is happening with him. I’m not the one making decisions for him, and I’m not the one ensuring that he’s getting the best out of his time there.

Instead my mama heart is trying to be okay with ‘good enough’. This stander is not the one that we trialled. It’s not set up the way that I would set it up, and it’s not as supportive as I would like. But. But he is standing, which is good for him. It’s good for his hips and muscles and digestion and I bet it feels really good.

I hate this. How do I advocate, and how do I settle for ‘good enough’ when for the past five years I have done everything in my power to ensure Mikaere has everything, and more that he needs?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disability #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #transitionToSchool #standingFrames #hateThis