Elly Rarg

On this day, 10.11.2016. I do remember this day. Our boy got to leave the hospital for the first time, not to come home, but across the city to another hospital – a tertiary level children’s hospital. It felt like big deal (big enough that they sent us in an ambulance, with two nurses) but actually, he was fine.

Here is what I took away from our metabolic consult – there is no cure, or treatment that he wasn’t already on. NKH symptoms were coming, and essentially, he could have weeks or years, but likely weeks. That’s it. I was frustrated with our consultant… I shouldn’t have been, he was lovely but also restricted by the trust he works for on what he can and can’t say, particularly in regards to research and hope. Since then we’ve released the NKH Info pack, which does say the things he couldn’t.

When we got back, in that awful witching hour where nothing helps (although, I think it might have been the pain from sodium benzoate, but I couldn’t have known that at the time)… Kai’s nurse suggested he might be bored. Usually babies have exposed to the world and have all sorts of new sensory input going on, but Kai didn’t. I felt bad that he had been deprived of new experiences, so we got him a mobile. Anyway.

This day was the day I first started advocating for my boy. If he only had weeks, I didn’t want to spend them in NICU. I wanted time with him, I wanted to stop being separated from him at night, and I wanted to make memories at home.

When I think on it now, I think that at the end I should have advocated more, but I didn’t have the capacity. I keep saying it, but I feel so fragile right now. Holding things together to look and sound and act like it’s all fine, but it’s not. I spend all day holding back my thoughts so I can function. But in those quiet moments? I relive the months and weeks and days and hours and minutes before he died. And I feel like he deserved more. I hate that I fell short for him.

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On this day, 09.11.2016. I barely remember this day… these ones are all kind of blurred together in NICU while we waited for I don’t even know what to be put in place. I do remember being really chuffed that we could breastfeed together. Feeding him felt like something I could do, and I was so, so pleased that I pumped in those early days so I could be ready when he was.

On this day he was trialled in a carseat, because they wanted to send us across to GOSH to meet Kai’s metabolic consult. He had to sit in it for 30 minutes with no desats, and he was fine.

Look how small he was, and yet still so wildly determined. In these days, after the trauma of the vent but before any other symptoms showed up, when I was just getting to know him, to know what it felt to be a Mama, it was a relief to be able to love him so deeply. In the hospital, in NICU there was such a vivid focus that was just him and my heart pick him up and nestled him in there in a way that I’d never really experienced before (and now that same part of my heart is torn, it’s in shreds, so completely broken now that he’s not here).

I’m beginning to forget things about him. It absolutely kills me that I’m forgetting. The way his hair feels when your run your fingers through it, and his funny little vocalisations and shape of his chest and how he folds his legs.

I don’t remember this day eight years ago exactly. I wish I did. I wish my memory was perfect and that I could have never forgotten any moment or instant of his life. It’s a comfort that we have so many photos. That we can flick through them. I’m making an album, year by year. 2016, up to this day (the 9th of Nov) is already 332 pages long. The bulk of that was the last 30 days, since he was born. It makes sense, I guess.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCJX_TINwLg/

On this day 08.11.2016. I wish I could step back into this day. I’d fight differently, for him I think. So much is rooted in things we didn’t know things we couldn’t have figured out. We trusted our doctors more than we trusted ourselves.

That would change. NKH is so brutal. I’m prepping for the next charity trustee meeting, and it’s a mix of gratitude and strategy and what else can we (I) do? I wish there was more of me, to do more. So much of my heart right now is weighted in grief, and it’s hard to keep the days straight, much less look objectively at a charity strategy and execution.

Kai deserved more. He deserved better. And I hate that we’re here, without him. I feel like I’m a broken record, but my heart my heart my heart.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCGzN5VBXls/

On this day 07.11.2016. He was so tiny. I hate that we had so many days in hospital. We didn’t know how much we could advocate, we were still very new to navigating medical environments and weighing up the power balances of people we perceived to be in positions of authority (that all changed very quickly, when I realised that I was the one in the position of authority and that when I wasn’t, mistakes were made). That place. That time. Oh bub.

I miss him. With fierceness that hasn’t dulled, even though it’s been months (stab me now, with the pointy edge of reality. It literally couldn’t hurt more than it already does). Death comes for us all, and yet – some earlier than others. Since Kai’s died, I’m much more sensitive to other peoples news, it hits different to hear that someone has died. It’s hard, and it happens a lot, death. I think I knew this intellectually before (we all die sometime) but honestly, around 1500 people die every day in the UK. So many people. Anyway. Today I don’t want to explore what grief feels like (there are no words for the impossible and unacceptable).

I want to think about how beautiful he was. And how cute his chubby little hands were, and how even back then, he would make funny little vocalisations. <3 He became the centre of my everything, you know? He made us a family. He made me a Mama. He loved us, and we love him. I miss him so very much. #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere from Instagram: https://instagr.am/p/DCETi1MBu0B/

On this day 06.11.2016. Oh my days. Eight years ago I was still trying really hard to pretend like this was all one massive mistake and our baby was fine (let’s just forget about the previous 20 days like they hadn’t happened). I hoped that any damage that had been done was minimal, and that any further NKH symptoms might not show themselves, and if they did maybe they’d be mild and our boy would be fine? Like his incredibly rare fucked up glycine issue would just disappear, maybe?��Except that then we had a conversation with Nurse Lynn, the palliative care nurse. Because NKH is life limiting diagnosis and as part of our go-home plan we had to have a real plan and not just one that was us pretending all was fine.

Because we didn’t know how long he would live (and no one gave us hope that we might have years). We didn’t know how long before we’d see symptoms (only weeks, so they were right to have a plan in place). ��We talked about Hospice and cold rooms and resuscitation and choice. We talked about notifying A&E’s and who to call when symptoms flared.��Eight years on and I feel like sure, this is standard and no big deal. But at the time it was horrific to think my beautiful baby might die.

It’s still horrific to think that. To know that. To have it actually happen. My heart hurts. We had eight years, thank all the powers that be. I wish we’d had more. I wish he hadn’t ever had NKH. I wish NKH wasn’t even a thing.

(I look at these photos and I can’t help but think he was beautiful. I just really want to scoop him up and hug him. He was so loved. Memories aren’t enough. My heart hurts my heart hurts my heart hurts my heart hurts my heart hurts).

#nkhfighter #nkhawareness #nkhbaby #nonketotichyperglycinemia #glycineencephalopathy #nicu #grief #remembering #nkhawareness #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhcansuckit from Instagram: https://instagr.am/p/DCBpn7lsoPZ/

On this day 05.11.2016. I remember chaffing at having to wait outside in the corridor while rounds was happening. I remember hoping for what essentially would be a miracle cure. That Kai would develop the same as a typical child would. It wasn’t hard to imagine at that point. He didn’t have any tubes, and acted like what we assumed was normal three week old baby behaviour.

They weren’t wrong, but I wanted them to be. We couldn’t see the NKH symptom and we couldn’t imagine what they might be like. Now, on the otherwise, this was the best, the most well Kai ever was, but this was not his most happiest.

He did have happy days, days were he was able to show joy and delight and love (there were a lot of days were he just slept too, and days that were much, much worse). BUT, those happy days existed. He had NKH and he had happy days. Those things were both true.��Thank all the powers that be that they were. I find real comfort in knowing he had happy moments.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB_E0EENdUa/

On this day 04.11.2016. Oh. I remember this day, where things felt like they were beginning to calm down. Kai was okay, breastfeeding like a champ, appropriate awake/sleep cycles. But despite the calm, living in NICU, being separated from him at night was beginning to wear really thin. It was hard, gruelling. Having to leave him to go home and eat, shower and sleep. God. Leaving your baby to the care of strangers, when it’s their job (and not their baby) is just – fuck me. I don’t know how I did that.

I also resent it, now. Having to leave him, when there were still moments I could have had with him. It chafes. That time with him was precious and that some of it was wasted genuinely irks. I understand why, I understand that logistically you can’t have parents room in in NICU. But fuck me. Being apart because of logistics was HARD.

There’s something to be said for throwing my feelings at the internet. For sharing my feelings so honestly. There are probably healthier (less public) ways of managing grief, but god. I miss him on my feed. I miss thinking about his future and what I can do for now and I didn’t realise how much of a drive that was in my day to day. Without it, without him, my days are less. There is less purpose to my days, now. 💔

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB8gCOYPE7v/

On this day 03.11.2016. I forgot yesterday was NKH Remembrance Day. I’m working pretty hard to hold my edges together, to function and to participate in the world, in my immediate surroundings. To smile at my two kids who need me and doing my absolute best to just hold it together.

I don’t feel like I’m doing it well (is there a ‘doing it well’ after your child died?). I don’t think there is. Everything still feels so raw, and I feel like there’s the me who is here, and now, and there’s the me where my mind and heart are back when he lived. The two are overlaid. People look at me and see the former, I know that I’m existing mostly in the latter.

Anyway. Eight years ago today our boy had an EEG. He’d been having seizures before he was diagnosed and given Sodium Benzoate and Dextromethorphan (not that we knew it at the time. I took a series of photos that are, to my eye, knowing Kai, recognisably a seizure. He was only a few days old. I thought he hadn’t a seizure until much later, but actually… he was having them very early on. I didn’t know until this project, until I was able to look through and examine every photo. Oh bub. My heart breaks for the experience he had).

NKH is just the most brutal. Even when he was at his absolute best, he was still subjected to so many tests and ridiculousness. Oh bub. I also think I was sick this day, and couldn’t come and see him. You’re not allowed to be sick and come into NICU (though I’m 100% sure whatever it was came from the hospital. I’d been nowhere else). At 23 days, this enforced separation was horrific. ��This current enforced separation between life and death is also horrific, so much more so.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB57OX3xD0p/

On this day 02.11.2016. I’m slowly, gently making my way through our photo memories, looking at every single one. Today makes 22 days in of 7.8 years… There have been literally hundreds of photos taken every day, particularly in the beginning when we thought we were only going to be graced with days.

The idea that there won’t be anymore though? May all the powers that be strike me down, because that kills me. How am I still getting through these days (I’m not, the days just happen regardless of me and my heart). I do the day, and all the things that are asked for me, and underneath the very thin veneer of ‘its fine everything is fine this is fine’ is depths of NOT FINE. I am not fine. Ironically, after years of Kai being not fine, I’m really hopeful that he IS fine, over there on the otherside.

I read a book once where the protagonist dies at the end of a very long quartet about his life. It was a historical fantasy, and they called the otherside the ‘Deep Fathoms’. Anyway, our protagonist dies and then we’re immediately transported to the Deep Fathoms before the book ends. That last page, maybe 300ish words brought me more comfort than anything else, because the idea that you could die and you could go to the place and your loved ones would be waiting and you’d be fine was genuinely a happy ever after I wasn’t expecting (there was also magic so once a year his wife could visit, but whatever). It was more straightforward than heaven, without the complexity of religion or judgement or whatever. It was fine.

I hope it’s all fine. I remember on this day frantically trying to google what NKH was, what our future looked like. With my baby who looked like a normal baby (I thought maybe the doctors had it wrong? They didn’t, but I was hopeful that our boy would be fine. Sometimes he was, even with NKH).

Anyway, on this day I cuddled and loved on my baby. I wish I could do that today.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB3WaviBrdP/

On this day 1.11.2016, eight year ago. We didn’t know at this point, but our NICU team didn’t want to discharge us without support around us. Kai could have gone home on this day, really. Except that the team knew what we refused to believe, which was that NKH would cause deterioration and seizures and this beautiful time with him would be the best time time we’d ever have. So. We lived in NICU, and we spent hours and hours in a shared room, with about two square metres (ish) assigned to us.

From the time we got to the hospital till the time we were kicked out to sleep and shower… we were wildly committed to Kaikai. Parenting him, breastfeeding him (!), changing his nappies and doing his obvs and holding him while he slept. Taking a million photos of his beautiful face. Gently researching NKH. It was… hard. It was very very hard.

Not as hard as now, though. Right now we’re on holiday with family, and it’s beautiful. And yet, I’m still crying in the dark, by myself. In the moments where no one can see. Taking deep breaths when someone comes around the corner to still my racing, broken heart, blinking my tears away under my sunglasses.

And I think that it’s not that I can’t cry openly (because I could, if I wanted), but also having to take on someones response is more than I have capacity for (and people are kind, and tend not to cry someone who is crying).

My heart hurts without him. I didn’t think it would be like this, I thought that it would be hard but manageable, because he’s not in his broken body suffering in pain with NKH. This instead is wildly unmanageable. I miss him. I’m sad for every photo I take of my babes that he’s not in. That we’re here experiencing things (halloween! dance parties! Swimming) and he’s… not here. Terribly, I wish he was (I wish I wasn’t a carrier and had never given Kai NKH in the first place. I wish NKH wasn’t even a thing that anyone had to experience. I wish I wish I wish…)

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB0Up_aIXSJ/