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

On Eva the Adventurer

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When we first released Eva the Adventurer, this is how small Mikaere was. He was teeny tiny back in 2017 (!!!) Most of you brought a copy – you know the story. I was desperate to *do* something. To help fund a cure for NKH, to raise money any which way I could – and so, despite my lack of illustration skills I wrote and illustrated, and published Eva. So many of you volunteered to translate it into 23 (!) different languages, and just, woah. I put it up on Amazon, and then life happened. I’ve not marketed it or really mentioned it. But, the universe kind of stepped in and helped.

As of this month, we’ve sold just over 4000 copies, and raised £5,000 for NKH Research. That this little book has raised so much for NKH research is just… I couldn’t have imagined we could have raised that much with a book. I’m grateful, for everyone who has purchased a copy, who has shared photos of your kids enjoying it, who has gifted copies – you guys are AMAZING and just, thank you.

They’re available on Amazon, please buy a copy if you’re able: https://www.amazon.co.uk/s?k=eva+the+adventurer

The book is bilingual, and available in many languages (the top 10 of 2021 are: Dutch, Swedish, Welsh, Africans, Irish, Finish, Spanish, Italian, Scottish, German. English on it’s own doesn’t even get a look in!). If you don’t have kids, please consider purchasing a copy and donating it to your local library, play centre or school.

If you’ve already bought a copy, would you mind leaving a review? It turns out reviews power purchase decisions! #bazaarvoice #otod #dontStopBelieving

Thanks hey. We couldn’t have raised this much money for NKH Research without you. All the royalties are deposited directly into Joseph’s Goal’s bank account. We don’t see a single penny (hurrah for making things easy!)

#EvaTheAdventurer #nkhAwareness #nkhCanSuckIt #bilingualBooks #kidsLit #kidsbookshelf #kidsbookswelove #childrensbooks #kidsshelf #kidslit #raisingReaders #booksForKids

On Ava + Willow

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I’m just… devastated. This morning I learned two beautiful girls with NKH have gained their wings. 

I hate NKH. I hate it I hate it I hate it, I hate that it’s not malicious or intentionally awful, but that it just is what it is. Science, in the most brutal and matter fact way. That a single gene doesn’t produce quite the right protein, which means a teeny tiny amino acid can’t be broken down. That smallest of small changes means that entire lives are changed, children die before they’re meant to, they suffer seizures, aren’t able to control their bodies, can’t see like everyone else, can’t move, or play, or live independently. No running or dancing or futures like we dreamed of for our babies.

And death. All the time the death. And the grief. The grief. These two sweet girls were SO LOVED! They were both so beautiful and amazing and so so so fiercely loved. And now two families are hurting, in a way I don’t and can’t understand because it hasn’t happened to me. Yet. It hasn’t happened to me, yet.

But today isn’t about me, and my fears about our future with Mikaere. It’s about these two beautiful sweet girls who deserved more. Who are so loved, and desperately missed.

It’s for all the kids who have gone before them (Alexander and Arthur and Kaleb and Halle Mae and Cathryn, Maynak, Gregory, Siem and and and…), and all the kids who come after, who are yet to join our little community. It’s for all our NKH kids who, with a gene therapy cure that is IN THE WORKS (that’s been proven to work, that is so close I can taste it, a cure that is practically tangible except for the complete lack of funds) would be living completely different lives. It’s for a different generation of NKH bees, who one day might not have to suffer.

Today I’m donating to Joseph’s Goal for NKH Research in Willows and Ava’s name, and I’m holding my boys a bit closer, a bit tighter. I’m remembering Willow and Ava and the many others, who are so loved, still. Just like I love my boy.

Fly high, lovelies. We miss you so much already x

PS – There is a fundraiser happening for Willows family here: justgiving.com/crowdfunding/willows-fund and you can learn more about beautiful Willow on her page: facebook.com/willowwarriorprincess
 
There’s also a fundraiser for Ava’s family, here: gofundme.com/for-ava-marie