#teammikaere

I want to share today about this chair. It’s a giant chair. Anyone with a disabled kid would recognise it – it’s called a Ppod. We were given a grant to get one, because they’re expensive. This one is moulded especially for Kai, but even still…

The reason we got one is because Kai has three chairs. Two up/down position ones, and his wheelchair. They’re basically like sitting in a dining room table chair, with a little padding. Not very comfortable, and awkwardly, not very supportive because they need adjusting more often than we can get the reps out.

Kai’s getting older, and his body bigger. His spine is beginning to twist into scoliosis and his hips are migrating out of their sockets and his neck and top of his spine are rounding… these musculoskeletal congenital malformations are typical of NKH, but oh my DAYS does it break my heart when he’s in pain.

So we applied for a grant to get him a supportive armchair. Something comfy but still supportive. I think he likes it.

Ps – Thank you everyone for your donations for NKH Awarness Day. I feel like you’re all in our corner 💛🙏

May 2nd is NKH Awareness Day – we’re asking instead of your daily flat white, please swap your coffee today for a donation towards NKH Research so families won’t need to worry about NKH moving forward. Please. Please donate. £3. £5. £15. Whatever you are able. #linkInProfile⁠

Justgiving:
https://ift.tt/fi0gqe4

#medicallyfragile #nkhawareness #nkhcansuckit #disabilityLife #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #seizures #teammikaere #nkhAwarnessDay2024 #someoneFundACure #nkh #ifhnkh #metabolicdisorder #glycineencephalopathy #cureNeeded #disabledKid #disabled #disability #complexmedicalneeds

This is our sixth NKH Awareness Day. When the first one came around I was in shock, still really grappling with our life, still, if I’m honest, in denial that my baby was even disabled (despite having just been discharged from hospice on end of life care… trauma coping mechanisms are wild).

This year, god I’m tired of asking. It feels hard to keep holding out my hand to ask, repeatedly. I’m skydiving, I’m selling books, and I’m asking people to donate, I’m asking people to run – I’m a never ending bucket shaker, shaking my little heart out in sheer desperation.

Because when I’m shaking my little ‘please god HELP ME’ bucket – what I’m not sharing is the seizures. The screaming, the pain. The days where my boy doesn’t wake up. The WEEKS he’s had off school. The panic when the sats monitor goes down to 80, and I’m yanking him out of bed to try get him to breathe. The cough that causes him to vomit his meds, retching until his stomach is empty, causing us both to be in tears. Him, because of discomfort, me, because I know I can’t give regive the meds and now he’s going to be in so much pain, he’s going to have more seizures and it’s going to be a shit time for everyone. This isn’t a phase. This is his life.

I’ve been trying really hard to give him his dignity, because people on the internet don’t need to know, in real time, the hard. But it IS hard. And the harder it gets, the more I start shaking little donation bucket because something has to CHANGE. And I can’t fix his genes, I can’t take away the seizures or the vomiting or the pain. But what I can do is ask for donations (again). Because here’s the thing, if I make £15 for NKH research, that’s not nothing. That is a tiny inch, in the right direction.

I also think this is going to be the last time I ask for donations on NKH Awareness day you guys. This is so hard. SO HARD. You guys have been in our corner, so wonderfully supportive, but I’m tapped out. This is an emotional week, remembering kids who we love, who are in pain, who have died. So, I guess, please donate? For the last #nkhawarenessday?

Facebook:
facebook.com/donate/320932097682656/

Justgiving:
justgiving.com/page/nkhawarenessday2024

We do an Easter egg hunt every year, a small one, with plastic eggs filled with inclusive things (helpful, when half a chocolate button is the amount you can handle orally). When we’re juggling three different kids with such wildly different needs, you keep things short, small and easy. It worked out great, actually. The Easter Bunny hid a few at Mikaere’s eye height (kind of him) and Kai was awake just long enough to be interested in finding them 🙂 I love it when he’s able to participate, and it’s at his level. Perfect!

Happy Easter, everyone. 🐣🐰💐

We took the kids to the Natural History Museum inclusive session, and this kid slept through all of it, except the five minutes we were with the T-Rex. He was awake just long enough to give it a good side eye.

🤷🏻‍♀️🦖👀

I was going to post these yesterday, on Mothers Day, for the boy who taught me so much about being a Mama (💛🙏🐝) but that other post about the medical life being all encompassing and holding on to what makes you you outside your life as a parent came out instead.

I think it holds true, still. Across all these years with Mikaere we’ve known he was going to be disabled, and that the world was less likely to accommodate him as much as we wanted it to. And that means dancing and adventuring and doing the ridiculous things for the both of us, instead of just me.

I feel like for all the things Mikaere can do, we support him, and for all the things he can’t, we make happen, and do twice as enthusiastically on his behalf.

So this year, as I turn 40, I’m going to enthusiastically hurl myself out of a plane (read: hold on tight with my eyes closed to the tandem skydiving instructor) for my boy. To raise money for NKH Research (and because Sam did it, so I don’t see why I can’t too).

Sponsor me? Wish me a happy birthday with a donation? https://www.justgiving.com/page/elly-is-skydiving #linkInBio

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#chairtySkyDive#teamMikaere#theMikaereFoundation#kiwisCanFly#nkhResearch

When you’re a parent to a disabled kid with a terminal disorder… there’s a thing that happens. Which is to say, you go all in on making sure your child has absolutely everything they need. You’re fighting for more, for better, for understanding, for care plans and therapy and a better quality of life and for memories… you’re trying to be the mama and the advocate, the nurse, physio, coordinator, therapist etc etc and it’s a lot, this person you need to become to do all the things for your baby.

 I became the best Mama I can be for Mikaere. For a long time it felt like we were just getting through each day and juggling as best we could – and seven years later, same, really. 

But what people don’t share is how much of your identity you lose in becoming this super human parent version of yourself. (You know you’re there if people are saying “I don’t know how you do it” or “you’re so strong/amazing/[insert adjective].”)

Here’s the thing. I didn’t know how integral it was to hold on to something that was just for me.

I gave up my career to take care of Mikaere, and I don’t regret it for an instant. I stopped adventuring because there was no way Mikaere would be able to come. I stopped going to the theatre and to events and threw myself into parenting. This is what Mums to disabled kids do – they become all encompassing medical Mamas.

So here. This is me in Austria last week, on this most amazing snow trip. Because I’m more than a medical Mama, and because I DIDN’T KNOW. I didn’t know how much I needed something for me. How I would cry when I got back on the snow. How I could be both Mikaere’s Mama with all the complex medical juggling *and* just Elly. I think it’s easy to lose yourself, and who you are when supporting a child with a terminal disability and I’ve never seen other medical mamas take any time for themselves. I’m grateful I had the moment to reconnect with who I was outside of parenting, and I know it’s a privilege to be able to do this, and yet I worry if I don’t take the time now, when our boy gains his wings I’ll be lost without him. And I don’t want that, I don’t want to be lost, I want to be able to adventure for the both of us x

It’s world book day, so probably a good day to share because hi, I write and publish children’s books to raise money for NKH Research. Of all three (Eva the Adventurer, Charlie the Crow and Betty the Bee has lost her way) Charlie is my favourite. Illustrated by the brilliant Zoë Ellison, he’s super fun, with great collective nouns and the added sensory offering makes it accessible (and also, sometimes it’s just fun to hear wacky bird sounds. Tig now honks at crows, which I LOVE).

Anyway, all three of the books are ideal for kids ages 2-5, available on Amazon, all the royalties go to NKH Research, and all three are available in dual language format in at least 10 languages (Eva the Adventurer is available in over 50). So that’s fun. Search “Elly Gedye books” on Amazon, or head over to booksforwednesdays.com 🙂

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#charliethecrow#childrensBook#booksforWednesdays#teamMikaere#themikaerefoundation

We’ve tried, I don’t know how many different kinds of therapies with our boy, but you know what we hadn’t tried? Massage. Mikaere used to have regular massages when he was teeny tiny, when baby massages were what you did, but there wasn’t anything on my radar for kids older than babes. So when I heard about a lady who did massage with disabled people in our area, I booked in a session.

Oh my days, Mikaere was VERY chill and relaxed for Charlie (from @accessible.massage) – it was great to see. Charlie works with people with disabilities, which was such a nice touch, she was gentle with him, able to move him safely (not always easy, he’s got no tone!), didn’t freak out when Mikaere had a seizure and just, was a joy. It was a very relaxing hour 🙂

And I’m glad, you know? Finding nice things to do for our boy feels so important, and when so many things we do with him in his body are about what he can’t do/teaching him how to xyz, massage is such a nice way for him to connect with his own body, and relax. Such a positive experience, you know?

Massage for disabled kids, such a win. I’m glad we found Charlie 🙂

#accessibleMassage#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit

First day of half term. We’re making dens (lol, also using the hoist as a key structural piece, which is not what it’s for, but it delights me no end to use this wildly expensive piece of equipment for something as frivolous as den making).

Half term is tricky… it’s not easy to find quiet, accessible activities that would suit our boy (because all the usual places are booked and wildly busy). A friend mentioned how half terms don’t look like they expected before we had disabled kids… and honestly? Same. I thought I’d be taking my kids snowboarding, or to the beach or just… a quick jaunt on a plane across the channel to see Europe.

But honestly, the logistics are too hard. Figuring out insurance I think would need a lot of fandangling, making sure we had all the right equipment, and knowing where to go if anything happened… it feels like a lot, and emotionally? I don’t have the bandwidth.

So we’re at home. Building dens. I know Kai would rather be at school… it’s more fun at school than at home, but here we are. Doing our best.

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#charliethecrow#childrensBook#booksforWednesdays#teamMikaere#theMikaereFoundation