Elly Rarg

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/

On this day 31.10.2016. Kai was 20 days old here. Because he was feeding so well, Kai’s NG tube was removed. He was TUBE FREE. I was elated, and spent the entire day staring at his sweet, tube free face. I felt like our boy was going from strength to strength. This is what is called the ‘honeymoon period’ – it usually lasts a few weeks, and is where your NKH baby is the most neurotypical, behaving and developing like their peers.

It’s short, but looking back – this was a wonderful wonderful day. Being able to see his sweet face, to cuddle him without tubes (only the sats monitor, which I quietly just… turned off and disconnected). I was still living at home, and our boy was still in NICU (which is awful). This time of good felt fragile and new, and it was hard to trust it.

Looking back – I’m glad there were good days. I’m glad I got to cuddle him and love him and just… I hated leaving him. I still hate leaving him, walking out of his glade is still hard. I still miss him so very much, I cry still. Every day (in silence, in the quiet moments where people can’t see or hear or intrude with their need to make you feel better for something that will never feel better).

Kai died. He died. The visceral horror that is this experience, where I live when my boy doesn’t is soul crushing. Affecting everything I do, and it makes me feel emotionally fragile and taut with wrongness. The earth is still spinning and we’re just… pulled through. What even is time? What does anything even matter anymore?

Living has never been so hard. If I could, I’d step back into these moments. Just… I’d go back, if it was a thing I could do. To cuddle him, to hold him and love him and not… be here in this reality without him. I imagine this is a thing people in my situation all do – wish for the going back. It hurts to know there is no going back, and only the dreary forward in which he does not exist here, with us.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit � from Instagram: https://instagr.am/p/DByM3OMxJqE/

On this day 30.10.2016… We could NOT get enough of his beautiful face. There are literally hundreds of photos of every angle of his face from this day. He was so awake, and looking at us and interacting with us. It was literally the most beautiful thing I’d ever seen, my beautiful baby looking back at me. Kai was a completely different baby than he was a few days back.

Even better, he started breastfeeding on this day. Briefly, but he figured it out and I was ELATED that breastfeeding was something we’d be able to experience together. I’d spent so long pumping (and hated it) that breastfeeding by comparison felt like such a win. Something long fought for (on both sides) and I’m pretty sure I cried when he latched (I mean, I was also a very tired NICU Mama who was still coming to terms with the idea that her baby wasn’t going to die imminently, so tears when anything happened, good or bad, weren’t unheard of). Still. We did that. Together.

I’m very immersed in this early days at the moment, but I came across a photo of me and Kai around 3 years old, all cuddled up together and I cried because I miss him so very much. I just do. And I wish he was here to scoop up and it hurts so very much that he is not.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DBvoE1wPoNf/

On this day, 29.10.2016. So many good things happened today. Kai smiled for the first time, at 18 days old. In his sleep, so not even close to a true social smile (and it would even be too early for a neurotypical social smile) BUT it was a relief to know he could, knowing that many NKH kiddos don’t meet that milestone. Kai also cried – big loud cries which were SO WONDERFUL to hear (because ITU is silent…really sick babies don’t cry). He also got his cannula removed, meaning he only had the NG and the sats monitor (which felt like nothing compared the tubes of previous days), and was downgraded from ITU to SCUBU. Oh the joy to be OUT of ITU! So many cuddles happened today, a proper little snuggler – I don’t think he spent a single minute in his incubator while we were there.

Kai always loved cuddles. Oh, I miss him so terribly. I hate that its been MONTHS since I last cuddled him (how how how how…) and that I will never again cuddle him in my lifetime feels impossible. How is that even a thing? Learning how to love him without him involves some kind of trickery which I can’t get my head or heart around. Every day. Every day I miss him, and I feel the space and the loss. Knowing that this is forever is genuinely devastating.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBtDPx4BrAa/

On this day 28.10.2016. Looking back at these photos feels easier, less traumatic. We were still in NICU, but each day brought back a whole bunch of positive firsts. Looking back, I can feel the joy thrumming through my chest, the love and the hope and the ‘thank all the powers that be’.

We tried him on a bottle on this day. It took a minute, but he worked out his suck reflex and took half a bottle safely (honestly, the idea that we did this without a SALT present gives me genuine anxiety right now, but I didn’t know anything back then). Reading back on old posts, I wrote “He’s doing so many more beautiful baby things. We love him so much. Sam laughs when our baby farts. And plays with Mikaere’s face. And our baby cries, with noise. Wrinkling his whole face up to show his rage.”

These were the first few days Kai got to be in his body where it wasn’t shutting down. Where it wasn’t broken, it was just perfectly imperfect. These few days were the first days of more love than pain. (Also, now that he wasn’t attached to tube and just sats wires, you know he spent most of the day in our arms, and not in the incubator). This was our second good day with him. He was 17 days old. I don’t for a second take for granted how lucky we were to have more than one good day with our boy.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBqedQTNkF2/

On this day, 27.10.2016. That day was a big day. When we came in, he was off the vent. Which is a surprise, I didn’t know they were planning to try, to see how he’d do. It wasn’t discussed with us before hand, we came in and he’d been downgraded to CPAP. We were elated, obviously, but Kai hated it. CPAP required a mask and it’s loud and theres a hat (which meant that he couldn’t have the CFM pins in, but also… he had scabs all of his head from them, so poor bub). And then, when we got back from dinner, they’d removed the CPAP. He was just on air. He opened his eyes, and was moving around more and just… this felt like a magical day. A day of hope.

Going slowly through each day of his life, intentionally looking at each photo we have (of the literal millions) and remembering. This day was eight years ago, and I still remember it. The surprise at the vent being out, then off CPAP, the tentative joy and hope and trying, for the first time, to wonder if we had a few more days together, maybe even weeks (I couldn’t, even then, hope for years). Going through each photo has been something to hold tight too, in the vacuum he’s left behind. He was here. He existed. And I love him (and thats why it hurts so much, because he is still, so very loved).

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBn5qxeq9ge/