On announcing the NKH Charity Cookbook

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Oh hai! There is MUCH going on (in particular behind the scenes. Spoiler: we broke up with Josephs Goal. More on that later, with full transparency).

In the meantime, I have wanted to make a charity cookbook for AGES. It’s been one of the ideas germinating in the background, particularly as I get more involved with books and Amazon and raising funds. After some positive comments from some in the NKH community, we’re doing it!

We’re asking for people to share their favourite recipes with us, for the charity book. All proceeds go to NKH research and all recipes will be credited to their authors (assuming you want to be credited).

This is open to friends and families, neighbours, therapists, anyone with a connection to the NKH community (oh hai, that’s you!) this is open to anyone, anywhere in the world.

We’re looking to get at least 150-200 recipes, and we’d love love you to share your favourites. You can share your recipes at www.mikaerefoundation.org/fundraiser-nkh-charity-cookbook

You can submit more than one! Please get involved, we can’t do this without you. Can’t wait to see what you share, we’re so excited!

On the Delichon Delta

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A few months ago we drove down to Fordingbridge to visit Delichon HQ to see if the Delichon Delta might be appropriate for Mikaere. We were having such issues with the Hoggi Bingo, don’t get me wrong, it’s a great supportive chair but for indoors and pavements only. We are not an indoors/pavement only kind of family. So, the hb was ideal for school but rubbish for any of the things we wanted to do. I was wildly unimpressed after losing the flexibility of our old buggy (and generally disillusioned with the world that actively excludes disabled people).

So, we went down to Delichon and put Mikaere in a bunch of different chairs, and had warm feels about the delta. It’s not the special tomato, it doesn’t have the swivel front wheel, and it doesn’t recline BUT that wheelchair doesn’t exist at the size Mikaere needs it. The Delta was a significant improvement on the Hoggi Bingo – it manages grass and dirt and off road hills, it’s good for running and has a bike attachment so we can all ride together. We were pretty pleased, except… it’s expensive (as it should be, it’s a quality piece of kit). But womp. So we got a quote, and went on our merry way. We talked to a handful of charities about funding and crossed our fingers. We borrowed our friends delta for our trip, and was quietly hopeful that we might one day have our own.

Well, thanks to the Elifar Foundation we found out this week they are going to cover the cost in full (!) and Mikaere’s very own Delichon Delta has been ordered!!! We’re very excited about the freedom it will afford us, and the adventures we’ll be able to go on. We’ll see. We’re excited and grateful, watch this space!

On Blackwood Forest

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A few weekends ago we took a holiday out to a cabin in the English woods. It was an “accessible” cabin, but I imagine it’s accessible for those who can self-transfer, rather than the full spectrum of those who are disabled.

Finding places we can stay is becoming increasingly more difficult (seriously, how hard is it to install a hoist over a profiling bed, and into a bathroom with a shower trolley?) but accessibility rant aside, it was a lovely weekend! Mikaere enjoyed being out and about in the forest, and there were hot tub swims and we ate a silly amount of icecream.

It was a delightful break, and we were stoked to just be in a different place. Mikaere loved it, and had such a great time. I also think there’s something to be said for getting him outside. It’s not always easy at home, so to be able to wheel him out onto the porch which faced a private bit of wood was lovely.

We weren’t able to use his regular chair on the off-road walks (seriously, the hoggi bingo awful for off-pavement) but we managed to borrow an off-road trail chair which was perfect (hurrah delichon delta!)

As Mikaere gets older (and bigger and less portable), it’s clear the world is becoming less accommodating, less accessible. But I’m pleased we managed to do this trip, that we made it work, that we were able to make some beautiful memories. Hurrah for holidays, hey?

PS – More photos over on instagram @teamMikaere

On Charlie + Suzy

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\Suzy Cato is a legend in the world of children’s programming in New Zealand. I grew up watching her in the 90s, on Suzy’s World. I sing the theme song “it’s our time” to my own kids when we finally get 1-1 time. We watch a lot of her videos with the boys.

So, when she featured Charlie the Crow on her book corner, I was so chuffed and honestly a bit teary.

You can watch Suzy read the Charlie book on YouTube, here:
https://youtu.be/l2D641cBJsA 

Give it a like or leave a comment!

You can get your own copy by searching by “Charlie the Crow” on Amazon (if you’re in NZ, Amazon.com.au works quite well)

It’s been a really hard few weeks, and there’s been lots going on. So to see Suzy feature Charlie, knowing that each copy helps raise funds for NKH Research is huge, and gives us such hope. We’re so grateful, even for the small wins.

On Standing

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This kid. The heat has been awful the last couple of days, hey? We’ve been sequestered inside in front of the aircon and fan, with the cool mat and paddling pools and spray bottles to mist. We’re all very relieved the heat has broken!!

Also, how tall is this kid now?! We don’t have a standing frame (because it’s massive and doesn’t fit in our apartment), but we do have a walker. While Mikaere doesn’t walk in it, it’s great for supportive standing. He’s not in it often enough if I’m honest (standing is one of the first things to be put aside when we’re under pressure) but we do the best we can considering. He’s pretty comfortable, if he can sleep in it, right? 🤣 I really wish Trexo Robotics were available in the UK, but hey ho! I’d love to see my boy be able to get around independently.

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 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