I cried on my knees, behind the closed door, after they took his chairs and slings and bath supports away. Two chubby young men, just doing their job. “So sorry for your loss” they said to my face. “So sad” they said when they thought I couldn’t hear. “Just a kid. She was really sad.”

I AM sad. I miss him, like a large swath of my core has been clawed out and is gone. It doesn’t seem real, how is this real, how is he not here (and I know how. I know how. But I can’t make my emotional self accept the unacceptable and so… I’m just a decimated piece of myself.

It’s been over a month. This is not easier 💔

—-

We’re doing a London walk. In October. If you can be in London on the 26 October, please come. Come walk with me. from Instagram: https://instagr.am/p/C_8bURXoOdB/

TLDR: I’m having a hard time, and so signed up for a potentially inappropriate fundraising Halloween walk to celebrate Kai’s birthday next month. Join me? I could use some friends.

—-

It’s Mikaere’s birthday in October. This was us at his last birthday. I am broken without him, so wildly, messily broken. I miss him, and I don’t think there are words to really explain what this feels like. It’s like there is a hook beneath your ribcage and it’s pulling you forward when every atom of your being wants to go BACK, back to when he was here, when we could touch him and love him and be with him, cuddle and care for him, and him smile or sleep or frown and instead the world keeps moving forward and it is AGONY.

It’s agony living when he does not.

It’s his birthday next month. I don’t know how to navigate daily life yet, so the idea of celebrating feels beyond my capabilities. And yet, the idea of NOT celebrating feels horrific and WORSE. So we celebrate. Doing a fundraising walk felt doable, I feel like I can do that. The only walk I know in October is a Halloween one. So I’m doing that. It might be inappropriate, looking back, but I’m already signed up now.

The reason I’m sharing is to ask if you will join me. I’m not sure I can do this, not really. I could really use some friends, to walk with me. Through the walk but also through this time, because it’s so hard. It’s so so hard to keep moving forwards. I miss him so very very much, to the detriment of everything else.

10km, on the 26th of October, 3pm in London (starts in Kennington).

Walk with me? from Instagram: https://instagr.am/p/C_0RVDCInJY/

Wonderful friends wrote our boys name in the sand, in Cornwall. I cried when I saw it, that they’d thought of him enough to remember him that way. I cried when I understood, for the first time, that *this* is what my many friends who have children who have died feel. This despair. This pain, where everything else feels impossible and pointless (because it does feel like that, in this world where we’re I’m just meant to continue on without my boy).

I cried when I realised that other people will miss him too, and his world was so much bigger than just me. I’m crying in mud kitchens and in Nando’s and in corners behind doors. This time is just… what even is time right now? Despair and decimation with the mundane of having to just *continue on*

Oh KaiKai, my beautiful beautiful boy. We miss you so much 💔 from Instagram: https://instagr.am/p/C_iw39gIl7e/

Heartbroken doesn’t seem like a strong enough term for what this feels like.

Thank you to everyone who came to send off our sweet boy, especially for those that flew in to be with us. We appreciate you and love you so much.

Thank you to everyone who joined the stream, the many hundreds of you. I’m sorry if I didn’t get to your message/email in time – I should have delegated that job, and I’m so sorry if you wanted to participate/pay your respects and weren’t able to.

Thank you to everyone who sent messages and kind words (if you didn’t get a response, please bear with us, we were inundated with so many messages and emails, it’s been overwhelming to go through all of them).

Thank you to everyone who has donated. What started as a “please don’t send flowers” turned into something much bigger. We’re overwhelmed and in awe of how much everyone has donated. Thank you. Thank you thank you thank you.

We miss our boy, so very much. Moe mai rā, KaiKai. We love you. from Instagram: https://instagr.am/p/C_DCJHZonPS/

Today is the day we commit our beautiful boy to the ground. There aren’t words, really. This is a whole magnitude of difference between anticipated grief and living through it. The earth hasn’t stopped spinning, the sun is still rising and people are still doing what they do. We’ve been dealing with funeral organising, and thrown the mundane of logistics up against the grief that spills out… how are we here?

This feels impossible. Absurd. Unreal. Our boy has died. He DIED. And since then his body has slowly, gently been doing what dead bodies do. (This is absurd. How is he dead how is he dead how is he dead).

I’m meant to be sharing about Kai’s funeral, which is today. If you don’t have the streaming link, please send me a text via WhatsApp (+44 7770389467) and I’ll send it to you. It starts at 12:30pm, BST.

If you’d like to donate in Kai’s honour, you can donate here if you feel moved to:
https://ift.tt/9jmCqka

Thank to you to everyone who has donated – we appreciate you so much <3 The funeral starts around 12:30pm BST. You can work out the time conversion, here: https://savvytime.com/converter/bst/aug-21-2024/12-30pm (Moe mai rā our sweet boy, moe mai rā. We love you x) from Instagram: https://instagr.am/p/C-7OM_uow4o/

Kai’s funeral will be at 12:30pm on Wednesday the 21st of August at the St Albans Woodland Burial Grounds in Keysoe, in Bedfordshire (MK44 2JP).

There will be a funeral reception afterwards at the Fox and Hounds, 54 High St, Riseley (MK44 1DT), which is a ten minute drive from the burial ground.

Everyone welcome (including kids), but please let us know if you’re coming, so we can organise numbers/food for the F&H.

Dress code is smart, and dark if you like; but also Elly is wearing a dress with aeroplanes, so you do you.

We’re hoping to stream for those who can’t make it. If you’d like the link, please email Elly: elly.hulance@gmail.com

Again, please no flowers, instead if you could donate in his honour if you feel moved to: https://ift.tt/EClc0KV

Please come ready to share with Elly and Sam a moment of joy you remember with Kai. We’re holding our memories tight and would love to hear yours.

Oh KaiKai, we love you so much.

Kā whati rā ia tāku māhuri tōtara

—-

It’s been a few days and this doesn’t feel real – my entire body viscerally rejects this devastating experience, this truth that hurts, that carves out my core and withers all that I am? I can’t breathe I can’t breathe I can’t breathe (I miss you I miss you I miss you). How do I stop crying? How am I picking out caskets and signing your death certificate and organising your funeral? Worse, how are people planning for after? (As far as I’m concerned, we bury you and then the earth will swallow us all whole, and that’s done. No more after).

Oh my beautiful beautiful boy. How do we honour you? How do we hold this pain (so much pain, so much pain) so you can be free? from Instagram: https://instagr.am/p/C-xsxTAo2xF/

It’s with the heaviest of hearts that Sam and Elly share that our beautiful darling boy, Mikaere Grant Hulance (Kai to all who knew him) has died. We are heartbroken, and we will always love him, and it’s in how we live moving forward that we honour him.

Funeral arrangements to come. Please, no flowers. Instead, please donate in his honour if you feel moved to: https://ift.tt/U9gnBYc

Kua hinga te tōtara i Te Waonuia-a-Tāne.

——-

How is it the earth still turns? That the sun rises and sets and everything else is still moving forward when our beautiful beautiful boy has devastated our hearts with his death? How can others still laugh, and play and work and move, how has the earth not just swallowed us all whole? How is the wind still blowing and the clocks still ticking forward? (How is my heart still beating?)

This devastation I feel has hollowed me. I feel less, I feel like the world is less. How do we go on? I know the answer is in his honour, but I don’t know how to do that right now. I know that we carry this pain so he doesn’t have to, but my HEART.

Fly high my beautiful, beautiful darling boy. We love you so much, and we miss you already. We will always love you – our world is less bright without you. 


For everything we do, to Mikaere, in his honour x from Instagram: https://instagr.am/p/C-tQ0uCofDK/

Our boy is in intensive care. If you have ever considered donating to NKH Research, if you ever needed a reason, here. This is why NKH is so awful. Our kids don’t deserve this, they don’t deserve this pain.

If you’ve ever considered donating, please donate now.
mikaerefoundation.org/donate #linkinBio

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch #fundraising from Instagram: https://instagr.am/p/C-iQN_dIFco/

Mikaere is sick and it’s heartbreaking. I’m not going to share details because I think he deserves his privacy and dignity, but as a parent, being plunged into a new level of worry and wtf do I DO is awful. I feel like I’m constantly second guessing myself, do I give another dose of this? Or that? What will the consequences be, will it help, or will it not? Do I take him into A&E? He’s already been reviewed and we’ve spoken to all the teams… What would they do in A&E we can’t do at home? What information could they provide that would change the current course of treatment? What are the risks of going in? Would going help? Or would it hinder? Is my response, my decision making being affected by the trauma of past visits, and how do I make sure that any trauma is not effecting my decision making process?

Because this is hard, and gets harder as time goes on. At the heart of it, my boy is in pain and he’s suffering and I hate it, with every single ounce of my being. Worse is that having two other children who just shrug off the same thing, I can see the gap. I can see what NKH has stolen from us and I grieve for my boy. Still. Years and years and years on, it’s still so wildly devastating.

When he’s well and happy living with NKH in our family feels tolerable. It’s not ideal, it’s not what I’d choose, but it feels like we’re making the best of a very bad deal. On days like today when he’s suffering, it feels horrific. I feel helpless, and trying to make clear, rational decisions when he’s so poorly, when it’s all so unclear… it’s hard.

So, I’m here with him, watching him, trying to run through all the things we could do and wait for his presentation to guide me. I do what I always do when I’m struggling: raise money for research. I published another charity book (Where is the Purple Racing Car: French edition) and I’m reviewing the fundraising pack we’re building for the charity and I’ve applied for a handful of grants, and I’m halfway through a grant proposal for a partnership that might help and just… please. Can he please be well and happy? (He’s not well and happy and it makes me sick to my stomach).

NKH is awful. It’s awful it’s awful it’s awful. from Instagram: https://instagr.am/p/C-cQ48BI96n/

Fancy an achievable moving challenge for a good cause? Because 1 in 3 babies born with NKH won’t see their first birthday (💔), and the others live with seizures and pain and dystonia, and are unlikely to see their tenth birthday (💔). We can change this! With just walking (!)

The NKH 100 Mile Challenge is kicking off in TWO Weeks – if you want to sign up, now is the time!!

You can do this challenge from anywhere! America? Perfect. UK? New Zealand? Australia? Spain? Portugal? France? Yes, get in! It’s a virtual challenge, we’re all in it together.

Join us! More info at www.nkhcharityrun.com #linkInbio

As always, the proceeds from this challenge go to support kids and families with NKH and research into gene therapy treatment for NKH, via the Mikaere Foundation.

The Challenge kicks off 1st of July. Sign up now! nkhcharityrun.com

Get in!

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #cure4nkh #fundraising #nkhawareness #nkh100MileChallenge #raisingFunds #getMoving #100milechallenge #100milesinamonth from Instagram: https://instagr.am/p/C8JPnLCoN9x/