Elly Rarg

£On this day, 13 October 2016. Things were getting worse. It was only Kai’s second day ever, and he started showing signs of edema (fluid retention) around his little face. His brain activity wasn’t normal, so they put pins in his head to measure it (when I think about how painful that must have been, I feel sick. I could have intervened, but I didn’t know that was something I could have done). He was losing all his baby reflexes, also started in oxygen… everything was going badly. The team were beginning to make noises about preparing ourselves, that he might not make it.

Still, I got to hold him, after they started the oxygen, before they put the pins in his head. I was delighted to be given the chance to hold him. The third time since he’d been born (we counted and cherished each cuddle, they were so rare in those first days). Honestly, being in NICU is a nightmare. Only two people allowed at a time, having to wait in the parent room during rounds, having to leave to eat and sleep. Being separated from your poorly baby, it’s heartbreaking. So so so heartbreaking.

This is what NKH looks like. It’s hard, and it hurts, it hurts everyone. (I’m trying so hard to hold on to the idea that it hurts because we love, but my broken heart is having a hard time with the idea of loving through the loss of this magnitude).

Kai would have been eight this week. I miss him. I miss him with every ounce of my being, and the world feels so much less without him. If you’d like to help celebrate his birthday, we’re raising donations into his memorial fund, with a long term goal that one day, children born with NKH won’t need to experience this.

Please donate £8 for his 8th birthday, if you can: https://ift.tt/SduajmI

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

On this day, 12 October 2016. Oh bub. Looking back at these is hard – we were so in love with him and terrified (and clueless) about what was going on. He was barely a full day old, and deteriorating. He hadn’t fed (apart from a glucose solution through his cannula), hadn’t opened his eyes, hadn’t cried. We didn’t know it, but this is the beginning of the apnea phase of NKH. We also were separated our first night, because you can’t sleep in the NICU. While we were gone, there were more cannulas inserted, and a lumbar puncture was done. It’s so heartbreaking to know what we know now, how painful those things are. How these things are done on purpose when you’re not there.

This is peak NKH. This is what Nonketotic Hyperglycinemia looks like. Many babies born with NKH don’t survive this stage. Kai almost didn’t, but I’m getting ahead of myself.

We were exhausted, I was in so much pain post birth, but we were so very hopeful, clinging desperately to hope and love. Because he is so very loved, from this moment eight years ago, to right now. Fiercely loved, and so very missed 💔

Kai would have been eight yesterday. If you’d like to help celebrate his birthday, please consider donation £8 in his memory:
https://ift.tt/LoNIpDP

Please donate, if you’re able.

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch #fundraising #legacy from Instagram: https://instagr.am/p/DBBK4rmPsnP/

It feels impossible that our boy isn’t here. Devastating, in all the many ways. He would have been eight today… I feel both endlessly grateful for the many years we had with him and robbed of the many more we could have had, had he not had NKH.

I hate that he’s not popping up on my feed, so I’m going to post photos of his life, on this day. I want to see his face, he existed and he mattered and he was so very very loved and is desperately missed, with an ache that pulls from my core.

So. Today, eight years ago in 2016, our beautiful beautiful boy was born, after a very gruelling birth. Sam and I were so happy he had arrived, we were so desperately in love with him. We had a blissful hour where the world was glorious and everything was okay. Then at one of the checks the nurse noted that he had no tone, hadn’t opened his eyes or tried to feed and he was taken from my chest in bundled into an incubator in NICU. We didn’t know what was going on, we didn’t know about NKH. All we knew was that ‘something’ was wrong and we hoped desperately that it was something that could be fixed.

He was so loved, though. So beautifully, wonderfully loved.

If you’d like to help celebrate his birthday, please consider donating to Kai’s memorial. We’re exploring what it would mean to start an endowment fund in his name, which would allow us to support families with NKH forever, for as long as we’re needed.

justgiving.com/page/forkaikai

Happy Birthday sweet boy. We miss you so very much x

(Clarification: usually all donations to the Mikaere Foundation go to NKH research. We’re still exploring possibilities, but the idea would be this fund would be a one off, funded by this specific memorial. Any income from the fund would be used to allow longterm, perpetual support for NKH families wherever its needed, whether that’s research or once we’re finally at clinical trial stage (!) supporting families access to treatments or whatever else might be needed. This is a long term plan, and part of Kai’s legacy).

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #cure4nkh #nkhResearch from Instagram: https://instagr.am/p/DA-mGghB7Ta/

We went to see Kai’s glade earlier this week. Tonight my toddler asked again why Kai had to die. Just, how. How are we here, without him?

Those weeks leading up the end rotate in my thoughts, constantly. What else should we have done? Did we make good choices? Should we have made different ones? How. How how how how how are we HERE (I’m sobbing, my heart my heart my heart).

It doesn’t feel real, it doesn’t feel right. My insides are decimated, and yet, I still have to do all the things (showering and feeding the babes and laundry and riding the bus just… how is the world still going on?) Adjusting to this “new normal” is all kinds of horrific.

Anyway. I meant to say thank you to everyone who has signed up on the 10km walk (I don’t even know if I can walk that far, but I don’t think it matters. My hearts already broken and if my body is broken by a walk, well then). If you want to join me, please come. Come walk in honour of my boy with me, so I don’t need to walk by myself. You need to sign up by next Thursday (the 6th of Oct).

https://ift.tt/WgHi1kh

Honestly, I’m so broken. I’m absolutely broken without my boy. I’ve never hated NKH more than I do right now. 💔🐝 from Instagram: https://instagr.am/p/DAWpb_moYK5/

Yesterday I got a remembrance bee in honour of my boy. I miss him, I miss him in a way that makes it hard to breathe, a hook under my chest that’s linked to him that makes THIS, this time and space without him unbearable, unmanageable, un-everything. Learning how to exist in this new normal without him is agony and I hate it (I always thought that I’d grieve differently, that I’d dance through life for him, in his honour, but honestly, there is no dancing. This is barely existing. This anguish is excruciating and I MISS HIM).

I feel better, having this bee. This way he’s with me (he’s always with me) and I’m grateful. For this outside always connection to him, something I can touch and carry with me. And for @whatjosiesaw, who got one too, and sorted all the details and lifted all of the load, making it so very easy (I appreciate you so much 💛 I also appreciate that time you gave Kaikai a temporary tattoo, making sure he was included and involved 💛). And I’m grateful to @nataliafineline, for inking the most delicate and perfect of bees.

Oh KaiKai. In your honour, my beautiful beautiful boy. Moe mai rā x from Instagram: https://instagr.am/p/DASp5RCoJId/

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 💔

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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.

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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/