#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DClsurbJfcb/
The thing is… his future with NKH just happened slowly, without my noticing. In the same way that neurotypical babies slowly develop, Kai didn’t. I didn’t know that he wasn’t, he was my first babe and I had no idea really what to expect. Instead, in these days I fretted and I worried and mostly I spent hours holding him and telling him how much I loved him.
It was easier to not fret or worry, and just enjoy him when Sam was around. Later, I’d enjoy the days just the two us. The luxury of it (especially when I figured I could block out days just for us, so we didn’t have to go to any appointments or talk to anyone).
I miss those days, now. The quietness of just us two, the joy. Finding things that would prompt a smile, holding still for a cuddle. In a few years, after we’d moved, I’d come to know the time by where the sun came in through the windows, because I’d be holding Kai and not want to move.
Now, when the sun hits that spot and I notice it, my heart aches for him. I feel like the last year past too quickly. He was at school and had siblings. I wasn’t even his primary carer anymore. No more luxurious afternoon cuddles. I miss them. I miss him.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DCjH8rDO7L5/
I’m glad it wasn’t. I’m glad we had a bucket ton of photos taken of us clearly loving on our sweet boy. I was so proud of him, so pleased to have my baby home. This shoot made photos feel accessible, and doable. And because of how wonderful this experience was, we ended up getting photos on or near Kai’s birthday every year.
Not getting a shoot this year was the first time we’d ever skipped. How can we take family photos without Kai there? How do we go on without him? I feel like part of our family is missing, and that we are less, without him. I miss him. I miss him so dreadfully. from Instagram: https://instagr.am/p/DChg82pv74l/
I think I also started dipping my toes into the NKH groups. I was wildly intimidated, especially because my experience of disability was so limited. And some of the older kids were so very profoundly disabled, in a lot of pain, and were dying. It scared me. I didn’t want that for my small, sweet baby, and I just… I couldn’t imagine living that life.
If I had the chance to reach back, it would be to say what I say to almost every newly diagnosed family we meet. That there are moments of joy and happiness, too. That being profoundly disabled doesn’t change who they are, they’re still your wee babe, who you will love so very much.
Today we met a family whose child died 5 years ago this year. We met them at hospice, way back then. When I was asked how I was I cried. Up and down, I said. I said that I couldn’t see it getting easier. The response was that it would, one day. That there would still be ups and downs, but that it would get easier.
I thought that was kind, the promise of easier. I don’t necessarily believe it, from the depths of despair, where I stand. I genuinely can’t see how I can love like I do and not be in genuine despair over his death. My days are less when he’s not here. I’m doing more, but it doesn’t feel meaningful. It feels like distractions, like if I’m busy enough, occupied enough that my brain and heart won’t notice that my heart hurts.
I miss him. I miss him I miss him I misshimImisshimImisshimImisshimImisshim.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DCfDFA8Ravf/
I look at these photos and I can see my parenting newness – letting the baby sleep on the couch (which I would never do now with neurotypical babies, who roll and squirm) or the way I’ve covered him in so many blankets (why does he need so many? And inside?) and even in the sling, how he’s not upright, nor close enough to kiss. I was a new parent, figuring it out.
Now, eight years on, I’m devastated that the boy who made me a Mama has died. That he’s not here to love on, or hold or to hear. I miss him. I miss him in a way that claws at my insides, that screams in despair, so loud, silently, on the inside. I understand why women wail in their grief, and all of me wails too.
It still feels new, this grief. This part of parenting, wearing this agony, this despair every day. Smiling and keeping it light hearted with my babies, with strangers, knowing that on the inside, my large segment of my heart has gone to the otherside with my boy.
Onwards onwards onwards. I can do hard things (and surviving this heavy, weighty grief, holding it tight – it’s a hard thing). Someone once mentioned about ‘letting go’ but I think they misunderstand how love works. I can’t not love him, and grief is just love. It hurts because I love him and he died. The idea of ‘letting go’ also means letting go of love, and I don’t think I’ll be doing that.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds from Instagram: https://instagr.am/p/DCcQfRvvI0S/
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/
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/
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/
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/
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/