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!
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
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 🙂
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 🙂
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.
Hurrah for accessible play!! Honestly, I wasn’t sure if we were going to make it, but we did!Making as many memories as we can right now, and this was such a win 💛🥰🐝
We took Mikaere to the “Turn it Up” exhibition at the Science Museum. It had these accessible pipes that played music. It was the BEST.
When Mikaere was ill and was spending 20+ hours a day sleeping, I did a thing. It’s the thing I usually do when I feel helpless, in that I can’t heal my kid. I can’t take away his NKH, or stop the seizures or fix the brain damage, I can’t do anything to help his body weather the pain, or lethargy, or do anything to ease his experience. I can’t take away NKH for him.
But I can raise money for NKH Research. I can put out a new book, and have all the royalties (every single penny) go to NKH Research. I can do that, so I did. In a week of desperation to DO something. It’s not as slick as Charlie and doesn’t have the sensory aspects. It’s not as bright as Eva, but. BUT.
It’s actually pretty wonderful. Introducing Betty, what started as an experiment with AI image generation and has resulted in a book about a bee finding her way home. It’s cuter than I expected in real life, and actually, my 3 year old toddler really loves it.
Please buy a copy, all royalties go to NKH Research at UCL (the only organisation to have published research on NKH gene therapy!).
If you can’t afford to buy a copy, will you leave a review on the listing? It literally only has to be two words (make the title something like “great!” (Or super, brilliant, amazing; fantastic – use any adjective you like!) and then in the content pick another one word adjective). It takes two seconds, and the more reviews a book has, the more likely it is that others will buy it, and we’ll be able to raise more for NKH Research.
Currently it’s available in English, and in dual language formats Portuguese, Thai and Afrikaans. Turkish and other languages coming soon! (Want to see it in a different language, request it and I’ll prioritise it for you).
Betty the bee has lost her way; now available on Amazon: https://amzn.to/3SrHTod #linkInBio👆
I’ve been really careful to not share all the downs and hardships over the last year or so. Mostly because I want Mikaere to have his dignity and his medical experiences should be private and not content, but I also want to talk about what it’s like for us, as his parents.
Mikaere had a hard time last week and ended up in an ambulance and in A&E. He very narrowly missed a stay on the ward (and only because of some fierce advocating on my part – the ward is not a very safe place for respiratory vulnerable kids) and it can be a scary moment when you’re trying to navigate a system to keep your boy as safe as you can.
Knowing that it’s likely I’m the one who knows the most about his disorder out of all the people in the hospital (NKH is very rare), and having to be medically competent, so I can ask all the pertinent questions (does this med get synthesised down a pathway that this metabolic drug also does? Do his bloods suggest toxicity of a this metabolic med? Will this plan interfere with all the other plans we have? Whats causing all these issues? Don’t say deterioration, because I’m not having a bar of it).
Because I know that if I make mistake, or if the medical team misses something, it’s a huge world of pain for our boy. It means that I feel I need to be hyper vigilant, and very into the details. It’s also taking on the power dynamic, because there was a lot of pressure to admit him. They said death was a “potential risk”, but then didn’t want to have the quality of death conversation and were shocked when I did (don’t try threaten death to a palliative parent unless you’re serious, cause wtaf).
He’s home now, and fine, and that’s wonderful, but he’s started a new medication which has meant extreme lethargy. Kiddos with NKH are already super lethargic, but while he’s titrating up, we’re seeing very little awake time.
I miss my boy, and his little cheeky vocalisations and funny grins. I advocated hard for this path, did loads of research to figure out what might work best considering his med schedule, looked at what other NKH parents had decided and how other NKH kids reacted but I wish it wasn’t so hard for Mikaere, or for us. NKH really sucks, hey.
