Charlie the Crow – love easy sensory stories, it’s so fun to extend the story with stuff you already have on hand. Available on Amazon, all proceeds go to NKH gene therapy research 🙂
This kid, he started the school year with an eyeroll, and a pointed “okay please go away now, Mama, I’m at school”
It means a lot of us that our boy is at a school where we work with the teaching/therapist teams, where we’re all on the same side (which is what’s best for our boy) – we’re not fighting to be heard. For him to be going somewhere where he is seen, where he is thriving, where there is trust, is everything.
I just love him so much, and he’s going to school!!
We’re grateful – here’s to another wonderful academic year! 🙌
How many people are needed to fix/adjust a chair? Four. Four people came for this wretched chair. It’s an R82 Xpanda, and it’s wildly adjustable and supportive for disabled kiddos like Mikaere, who need the extra bit of help to sit comfortably.
But… because of its extreme adjustability (literally every aspect of it can be adjusted), it means that things get knocked or loose or out of place and WITHIN days our boy is uncomfortable again.
Sometimes we wait for people to come fix it (the wait is always long). Sometimes we get sick of waiting and go at it with an allen key. I’m very glad we have supportive seating for our guy, for play and for eating, an alternative to his wheelchair, but I wish it was more robust. I don’t know how often I’ve fought with it to make sure my boy is comfortable!
It’s just one of the many, many aspects of our day to day. Comfortable chairs. 100% taken for granted by people who don’t need adjustable, supportive seating.
A few months ago we made the decision to purchase a WAV (a wheelchair accessible vehicle). We’d been waiting on Motability to provide one for months and months and months (read: closer to a year than a quarter) and in that time we were lifting Mikaere in and out of his wheelchair and into his car seat. This kid isn’t small, and he’s not light. It got to the point by where I didn’t feel like I could do it safely (safe for either me or Mikaere) which meant that Sam had to come everywhere with us (which just wasn’t practical). Mikaere’s hips aren’t in the best shape, so we worried how all this manual handling was contributing to their deterioration.
Additionally, the upfront cost of the motability lease was a whopping £8k, which we’d saved, but the idea of that amount of money only covering a vehicle for the length of the lease (in addition they take ££ out of Mikaere’s benefit) felt like so much! When we missed the third “you’ll definitely have the new car by” date, we’d had enough.
So we pivoted, and found this beauty second hand. Meet Betty. She’s not new, BUT she has enough room for all of us (and a nurse!). Packing her up is a dream, and she’s made going places significantly easier.
We were lucky, in that her previous owner was literally about to “we buy any car” her when Sam reached out. We were able to negotiate what felt like an affordable discount (lower than the original asking price, higher than we buy any car) to have her be ours.
Which is lucky, because her configuration (wheelchair in the middle, two chairs either side, and one fold down in the back, and chairbench in the front) is essentially a unicorn set up. It’s exactly what we wanted, but pretty rare to see it in WAVS that are available to purchase.
Anyway, we’re pretty pleased. I wish we’d managed this earlier – having a WAV has improved our quality of life, Mikaere’s especially, and we’re grateful!
This kid. This here is Mikaere having a chat with his neurologist, who last saw him when he was teeny tiny babe (we’ve been under a neurodisability service to manage any epilepsy related care, but that service is now in crisis, so I made a fuss and now my boy has a neurologist).
The appointment didn’t go quite as I hoped (not because of the neurologist, who is lovely, but because of the restrictions placed by the trust and the NHS which make care for intractable seizures difficult). BUT we have a work around and I’m hopeful.
The absolute highlight was my boy having a chat with his consultant. Honestly, the last time she saw him he was basically comatose, so for her to see how far he’s come, and what an absolute joy he is felt really validating.
These small moments of joy, hey? I’m living for them!
These two are jumping out a plane next weekend, for NKH Research. As Andrew said:
“Alright! Having just hit the daunting age of 40, I thought, “What better way to welcome this milestone than to hurl myself out of a plane?!” As a proud Kiwi who loves an adventure, I’m embarrassed to say that I have never before thrown caution (and myself) to the wind from such dizzying heights!
And for a fantastic cause, too. Non-ketotic hyperglycinemia (NKH) is a tongue-twister that’s much harder to live with than pronounce. Thankfully, the Mikaere Foundation has been battling this since 2017, working to demystify NKH, supporting families grappling with its challenges and finding ways to give those with NKH a brighter future.
So, if you ever wanted to see a middle-aged Kiwi plummet from the sky, now’s your chance! Donate generously and give wings (metaphorically, of course) to an incredible cause! #SkydivingForNKH#KiwisCanFly
Lol. Are these two not the absolute best?
You can donate to Andrew here: https://www.justgiving.com/page/andrewjumpsoutofaplane
And Sam here: https://www.justgiving.com/fundraising/sam-falls-from-airplane
Today we were lucky enough to spend some time with another NKH Family. This is Doms, his mama @eloiselovesherboys and his brother. Genuinely, I could have sat and chatted for ages – it’s SO nice to spend time with families who just get it, no drama, no apologies needed. When Mikaere had a few seizures or Doms coughed – there was no raised eyebrows or side looks, because their family is like our family. We understood, and were comfortable.
We were somewhere that was accessible for our boys, and Mikaere’s brother took a shine to Dom’s brother Hugo (who was very very sweet with our toddler) and it was just a really wonderful afternoon in the garden.
It was also nice to hang out with a family who is ahead of us, to be able to glimpse what our future might look like, maybe, if we’re lucky. To spend a joyous afternoon together, and to have hope like that. Often the NKH community is filled with grief and hardship, and this afternoon was a proper balm. I’m grateful, anyway, and glad we were able to make this afternoon happen 🙂
One of the things that really gets me is when people assume Mikaere isn’t capable. We’ve had a few new people meet Mikaere recently (all genuinely lovely people, so no shade to them).
It’s just, so often people assume that Mikaere can’t, that they miss what he can. He’s perfectly capable of independent play, assuming it’s accessible for him (bright objects with bells hanging from the hoist, within reaching distance, for example).
He’s happy to explore, and can follow instructions if you give him enough time to process the ask and model it a few times.
You don’t need to play *for* him, you don’t need to shake things in his face, or even just talking at him nonstop (who likes that, anyway?). And sure, narration is fine and important, but give him the opportunity to respond. A conversation has natural breaks so the other person can share their side too. And Mikaere *does* respond, which is the most heartbreaking part. He wants to chat to you, he wants to be seen and heard. He wants to be given the opportunity to show you what he can do.
Also, sometimes he just wants to play, if you could just get out of the way, please.
I know that this is something his team will learn, eventually, but ooof. Watching them shake things in his face always takes me a back (and I always immediately step in, because wtf, how do you like having things shaken in your face, oh hai, here is a random everyday object, let me introduce you to it by SHAKING IT IN YOUR FACE. God. He’s disabled, not a puppy you want to hype up).
Anyway. Can we just assume people can do things? Even when they’re disabled? K, thx.
This kid, legs for daaaaays! We went out onto the common for a walk. Usually we don’t get to see awake Mikaere. He’s so busy and engaged at school that he often crashes and sleeps when he’s at home.
But, now that we’re enjoying the summer holidays, we get to see our guy awake and alert. Today he was so focused, and vocalising and happy. It was a *joy* to see. Honestly, he’s done so well at school this year, it’s really really brilliant to see him thrive, and to be able to enjoy the positive experiences he’s had 🙂
We’re in a season of calm, and honestly – it’s so good for all of us!
Earlier this week, our boy had an EEG. It’s the first one in a few years; and it’s because his seizures have changed over the last six months or so. He’s still having daily seizures, and they’re still a thing that dominate our lives. We’re working out a new plan, and hopefully this eeg will help inform that. Poor bug looks exhausted because they need him to be sleeping (so this is at nap time, and he proper wants to be in bed, at home, not at a hospital with wires being stuck to his head).
It’s not the worst appointment, but I’m always torn. I’ve realised that I can turn down, or change appointments to suit what’s best for Mikaere. If they’re “just because” they can be done over the phone, I don’t need to stress my boy out by taking him into the hospital. If they’re going to distress him, but not inform any real change or aren’t prompted by any real symptoms (I’m looking at you “routine blood draws”) we decline, and don’t do them.
Lockdown has a lot to answer for, but one of the (very few) upsides was recognising the doctor/family authority relationship, and showing that actually, I do have some recourse to shield Kai from unnecessary in-person appointments. They’re not always what’s best for him, and advocating can look different depending on what he needs.
It also means that we’ve had significantly less hospital visits this year, which 🙌🙌🙌 Obviously, some appointments need to be in person, but I wish I’d known I could do this earlier. Hey ho!
