#teammikaere

We went back to hospice today. For a swim, but also for our hearts. All the bereavement support is there; so it made sense to try do a gentle visit back. There are lots of people there who love us, and are kind to us, and honestly, it was hard. It was hard to be there without Kai, to remember the week before and the week after he died.

Time is really throwing me, because it felt like I could just step back into his room, and he’d be there, and I could scoop him up and love on him, feeling his chubby fingers in mine, his hot breath on my neck, his chubby cheeks alongside mine… that’s not true, not even in the slightest, but my heart doesn’t know that, but it felt like I could, and I desperately wanted to somehow step back into a time and space where he exists.

But there aren’t magic time travelling doors that would allow me to be with my son. That’s not a thing. Instead time doesn’t care about me or my heart. Time just goes forward, and drags you with it. The sun rises and the earth spins and the sun sets, and the earth just takes you forward whether you want to go or not.

The sun set on the day he died, and then rose the next day. And again on the day we buried him. And on his birthday, when I lay down a blanket of flowers on his grave. And today, when we went back to the place he died. And it will tomorrow, and every day forward.

I’ve since come to realise that it’s not about carrying my grief, about *doing* something to make it easier, to ease this. It’s about endurance. About accepting that the sun did rise today, and holding tight until sun sets (and the reverse, too; from sunset to sunrise). It’s about getting from breath to breath. And this my new forever.

(I hate it, obviously. Living without my boy is agony).

Anyway. If you find a magic time travelling door, let me know, because I really want to go back. (Don’t come for me, I know time only goes forward but my heart is broken, so…) from Instagram: https://instagr.am/p/DBMSaS5oknw/

On this day, 16th Oct 2016. Sam and I went home for the first time, to shower and get more clothes. Being there without Mikaere was awful. That this is our story is heartbreaking (I still feel the same).

At this point I was still admitted to the hospital, sleeping down the hall as my heart was being irregular. I remember the idea of not being at the hospital with our baby was inconceivable. There was a lot of crying. Faith and Fortitude, that’s what we used to tell ourselves.

Kai’s brain activity is abnormal, they still were sticking the little (CFM) pins in his head to measure things, which meant we couldn’t hold him. I remember that they had planned to do an MRI in the next day or two, and would take the pins out, which meant we could hold him. I was desperate, desperate to cuddle my babe.

(I still am, here, today in 2024. Desperate to cuddle my boy. I miss him. With an agony I don’t know how I’m going to endure).

Kai would have been eight this week. 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, if you can: https://ift.tt/JacZoL3

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

This day, on 15 Oct 2016. I’m still finding it really hard to look back at these. This is Day 4. We still didn’t know what was going on. I was really holding on tight to every positive I could, like was putting on weight, he’d gained 60g, and that felt like such a win. We also got to start changing his nappies, too (because in NICU, you need have permission to parent). I remember being SO GLAD we could parent at least in that way. According to my posts, Kai was also very active today. It was good he was active, in that he was moving his limbs, waving his little arms a little… but very bad that it was probably in response to pain or over stimulation.

I remember having discussions with the nurses, taking photos of their notes, desperate to understand what was happening. There wasn’t great communication, in that they didn’t know and were doing all the tests and didn’t want to give us any information unless they knew for sure. They weren’t very transparent with us. It was such a hard day. NKH is just so wildly brutal.

Awkwardly, today feels harder, here in 2024 without him. At least he was there, that teeny tiny baby, and I could hold his hand and talk to him. Now my heart has all the feelings and just… he’s not here. He’s dead. He died. He DIED. And now all I have is all this love in my heart, and tiny momentos, photos and videos to show that he existed and mattered and was here. It feels… less. I feel like I’ve been left behind, and I know I’m needed here, with my other babies and my family and friends who love me. But I find it hard to not also want to be where Kai is. I wish we were all here together. I miss Kai so very, very much.

#grief #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/DBI5R38oSQC/

On this day, eight years ago, 14 October 2016. This was such a heartbreaking day, and I found it really hard to look at these photos. Our boy was three days old, and we got the initial results back from his lumber puncture. On one hand, it didn’t look like a brain infection (like meningitis) which is both good, but also not (because meningitis you can treat, although with varying results).

We still didn’t know what was wrong and Kai was going into that awful apnea stage, where his lactates were high, meaning he couldn’t expel his waste gas/CO2 levels. He was upgraded from regular o2 to a CPAP machine, which forces the air into your system, rather than waiting for you to take a breath. That wasn’t working so well, so they intubated, and Kai was put on a ventilator to breathe for him.

We were so scared, and we felt so helpless. We blindly trusted his team to do what is best for him, but it was heartbreaking. We know now it was because he had toxic levels of glycine in his system. And that this is the window where many, many babies with NKH don’t survive. NKH is just the most horrific disorder, it is so wildly devastating. I think I cried as much on this day as I did today, if not more. My heart hurt then, in fear of my baby dying. My heart hurts today, now that I know what the horror is like (I was right to fear it – this anguish is all consuming and excruciating, never ending).

Still, on this day eight years ago, I got to hold him twice in a single day. I got to love on him, and whisper to him all the many ways I loved him, and I got to smell his little baby smell and nuzzle his beautiful cheeks. Today my arms are empty, and I miss him so much it physically hurts.

Kai would have been eight this week. It still seems incomprehensible that he is not here anymore. 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, if you can: https://ift.tt/JWwpm8S

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

£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/