Elly Rarg

On this day 15 Nov 2016. This day is fuzzy, in my mind. I remember being overwhelmed with how to manage the entire day by myself (as Sam was back at work). Grateful that we were at home, grateful that we could use all the kit we had for him (he was literally in everything – the pram, even though we didn’t go anywhere. The carrier, the cot, the fancy magic swinging baby chair… He was wriggly – and I remember him seeking me out, turning his gaze to follow me (something we were told he wouldn’t be able to do… fuelling my delusion that the doctors were wrong and the first month was just something else and actually my baby was fine now). One of my good friends came to visit and so I imagine there was a dinner and lots of chat.

In all the photos I’m in comfy clothes, hoodies and pj trousers, rather than ‘take me seriously’ hospital clothes.

Today I know that I could wear a hoodie and pjs and still go head to head with the lead consultant on the unit, if I had to. I know that a day at home is better than a day in hospital, and nothing to be taken for granted. I know that if I could do that day again as me today, it would be a doddle. And I wish I could. I wish I could just step into that photo and be there with my boy. But I can’t, because he DIED.

Today there was lady whose kid whacked mine the face with a bit of plant. Mine burst into tears (it was the last frustration in a long line of frustrations, rather than the delicate brush of leaf to the face) and she felt the need to manage hers. Halfway through she got overwhelmed and burst into tears. She had to leave and said that she had ‘a lot going on’. A difficult day, for her, for sure. It felt odd to be the composed one. To also not be crying all over the place, to be kind and not just… flipping between raging at the world and genuinely so distraught. Because I am, still. I think I always will be. from Instagram: https://instagr.am/p/DCY0yBDNZ7Z/

On this day 14.11.2016, at 34 days old, we finally got to take our boy home. It was after a gruelling morning of meeting our teams (so many people! We met people here for the first time who loved Kai and worked with him is entire life, who were in our daily lives that whole time, not that I knew it then). There was also a lot of talk about the end of life care plan, and what to do if Kai needed support and what to watch out for and look for and and and…

And then we took him home. We got out of the hospital and TOOK HIM HOME! The dream of every NICU parent, and I feel lucky that we got these days. Not every NKH parent gets to leave NICU with their baby in their arms. And we did. Thanks all the powers that be, we did.

In the today… there is still a space where he should be. Those medical professionals who we met this day eight years ago, after years of weekly calls and emails, are silent. My phone doesn’t ring anymore (and if it does, I don’t feel like I need to answer an unknown number like I did before). I’ve started, slowly shifting things in our house around. Donating somethings, moving other things to drawers. Sometimes I put them back because I CAN’T but some things make it to the drawers and some out of the house. It feels like we’re shifting into his space and it’s so hard. There are places I don’t want to go, because it would mean going there without him and I just… I can’t. We’re doing lots of new things, that we couldn’t have done (because accessibility) and that feels hard, too. Everything feels hard, and my heart, I miss him. I miss him I miss him I miss him in a way that doesn’t stop. I don’t have beautiful words, I have a mix of messy grief that is all over the place, all the time. A façade on the front and tears and agony underneath. (Don’t talk to me about grieving openly because that means taking on other peoples emotional response and I don’t have the capacity. Privately is easier).

Another day without Kai. I don’t have words for awful that feels.

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

On this day 13.11.2106. Here is what I took away from this day: 24/7 parenting a month old babe is no joke, but also – how LUCKY was I to be able to be there literally ALL THE TIME? Just down the hall there were so many parents who had to leave their babies overnight (and some, those who had been there months and months and months, who had to go back to work, only squeezing in an hour or so before rounds and a few hours in the evening. NICU life is brutal).

This day was a quiet one, just us three (and I love that, our wee little family). It was finding our rhythm with the feeds and swaddling him to get the awful meds down (ahhh sodium benzaote!) and it was learning when we should sleep, while also being terrified that if we slept we’d wake up and he’d have died (a genuine possibility, so you know). We ended up sleeping in shifts, or just dozing. We were still on the high of being together, so anything and everything felt possible (in a few months this would cause extreme sleep deprivation, and we’d end up getting overnight nurse support, but right now I was just squeezing sleep into moments here and there).

Today… I’ve slept more than I ever have before, because I slammed my body into being busy since we visited Kai’s grave. And I know I’m doing this because when my mind is quiet I’m still heavy with the moments he died, the moments before the moments after. The grief is debilitating, heavy and keeping moving is a way to break from that. And after three days, my body crashed and I slept for over 12 hours (no small feat when you have two young ones).

Anyway. Learning how to navigate grief is a thing. I’m still just trying to get through the days (I find it hard to focus, half doing one task before I’m distracted by another, I feel like I’m midproject on so many different things). Anyway. No judgement, just trying to get through the days. Conveniently the days happen regardless of what I do, so I feel like the bar for managing is low.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCTi0J_xMps/

On this day, 12.11.2016. There are about a kajillion photos of this day. Of every facial experience he ever made from the moment it was light enough to take photos till we went to sleep (though lets be honest, no one really sleeps when you have a newborn). We’d never spent so long in his company and it was GLORIOUS. The Live in Room was still a novel privilege I was a grateful for.

We had visitors and honestly, it was the most wonderful thing to finally be able to share our baby with our loved ones in a positive way. There was still screaming in the witching hour (which I’m still convinced is SB related pain), but mostly he was wonderful.

Mostly, in this time, I was terrified of the unknown, of what I didn’t know. Of what symptoms would look like (and please – may he never have symptoms, may they be mild, may everyone be wrong and may he be absolutely fine). We had to create an End of Life and Care directive, which actually, those initial conversations helped us form our thoughts on what we wanted for him over the years. I’m glad we had them, but at the time they scared me because I wanted him to be FINE and not think about him dying imminently.

Some of those decisions influenced his actual death, eight years later. We spent a lot of time thinking about quality of death. I don’t know if there can ever be such a thing as a positive death. A kind death. A painless one.

Death happens. And I think it’s harder for those who have to live on than for those that die. We went up to Kai’s glade yesterday. It was very very hard to leave him. So very hard. I miss him. I can’t even explain, despite all the posts and all the words just how deeply excruciating it is to live when he does not.

I thought that, having had years anticipating his death, I would have accepted it, and understood it, processed it more than I have. But you can’t, you just can’t anticipate what it’s like to lose your child unless you’ve lived it. It’s agony.

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

On this day, 11.11.2016. Kai was one month old on this day, and for the very first time, we got to spend the night together. After visiting the metabolic consultant and how I made very clear that if Kai’s time was limited I didn’t want spend any more time away from him than I had to, they graduated us to the Live In room. It’s the room where NICU parents spend 24 hours caring for their babies before they go home. It’s a trial run, with safety net nurses just down the hall just in case. We would be there more than 24 hours, but that was okay.

I remember being ecstatic – to have my baby, and privacy and somewhere to sit that wasn’t an awful NICU armchair. To be able to have more than two people bedside (!) and to EAT FOOD in the same room as the baby. We brought blankets and pillows from home and while it still very much was a hospital, it felt like a different world away from SCBU, and even more so than ITU.

…. It’s been a month since I’ve been posting these look-backs. Remembering in excruciating detail the early days. It’s been eight years since he was actaully a month old, and four months since he died. Memories and photos and videos don’t feel like enough and I hate that’s all that we have now. He was here and he mattered, and now he is not here and I hope he’s pain free and happy (as much someone who is dead can be pain free and happy, I guess).

A friend was sharing about her grief, and how for a long time she felt like a husk of herself. Me too. Except now and here.

I feel lucky that I have two other children and a husband and friends and family who love me, who have tethers to my heart, holding me to today, and these days moving forward. I now have a lot of compassion for people who, in their grief, turn to other means to cope. I can see how disassociation would be a comfort and I can see how it could be so bad being not alive would be a preferable option.

Anyway. Grief is pretty personal. Instead of all the not good things, I’m throwing my feelings to the internet. <3 for being here. I appreciate you. #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder from Instagram: https://instagr.am/p/DCOhlC8NiMP/

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.

#nonketoticHyperglycinemia #glycineencephalopathy #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCL8zAIiDFu/

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/