On the Heat

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

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

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

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

On 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 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 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

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 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