What we’re up to… November 24, 2024 at 05:00PM

By | #teammikaere | No Comments

On this day 24 Nov 2016. This day was spent mostly looking at this face. Something was definitely happening, I think I was processing the trauma of those first few weeks, because I remember this time being really, really impossible. I felt fragile and not really sure how to manage. I was functioning for Kai, but not necessarily for anything else. These days were hard, I think. Building up the resilience to living as a parent to disabled kid felt like a never ending endurance race.

We didn’t do anything, this day. We stayed home and loved on him. And yet, I remember it being like an emotional marathon with no end.

Today – same. Grief is like an emotional marathon, never ending, and yet you are still propelled forward. Things just keep happening, the day rises and you have to eat and there are jobs that need doing and just… everything keeps moving onwards. (The despair and sadness that this brings, the idea of moving onwards without our boy is just unbelievable and impossible and HOW are we meant to just go on with this, like this forever? (I know how, I don’t like how). I hate today. I hate all todays where my boy is not here).

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DCwv_ORK0Qj/

What we’re up to… November 24, 2024 at 09:50AM

By | #teammikaere | No Comments

To show that most people in this corner of the internet are lovely (and cleansing the palate from that last internet muppet) I’m sharing this from the brilliant @tylerfeder, who did a quick portrait of Kai 💛

I’m glad he had happy moments. I’m glad there was joy and smiles. I’m so very very glad that in his life, he had a full range of experiences and the ability to express happiness and delight was one. I loved moments like this when he was so obviously happy.

He was a joy, hey? X from Instagram: https://instagr.am/p/DCv-x5uID5b/

What we’re up to… November 23, 2024 at 10:00AM

By | #teammikaere | No Comments

On this day, 23 Nov 2016. We made it outside, so that’s positive. I’m recognising now that the witching hour at 6:30pm every night wasn’t reflux, it was pain. From the Sodium Benzoate. I didn’t even question the meds, or the side effects – it was just a weird thing that happened at that time everyday. Poor bug. Even at this age, just over a month old – pain was a daily occurrence.

NKH can suck it, it’s so terrible and just. I hate it. I hate how much it has stolen. Genuinely. People keep saying how wonderful it is that I’m continuing with the charity, the Mikaere Foundation, as if it’s something I would stop.

When NKH is no longer a thing, because there is a readily available treatment, that is available to every child, then I’ll stop. Because until then, children will be experiencing pain. Living a life that’s less than they deserve. Dying decades earlier than everyone one else. Parents will have to say goodbye to their children, and then live in an after without them. And until then, it’s trauma after trauma for everyone involved.

When NKH is longer a thing, then we can stop.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCtbI8yi27z/

What we’re up to… November 22, 2024 at 10:00AM

By | #teammikaere | No Comments

Oh this day, 22nd Nov 2016. I don’t remember any of these days, either. I guess they weren’t traumatic enough to remember. Which feels nice. To know that there were just some calm, slow days.

But also – I think that time just passes. It did then, and it does now. The sun doesn’t care what is happening with us, the earth just keeps spinning and time passes whether we like it or not. Back then, time was something to be savoured. Every day was precious and now I feel like I’m disconnected from everything.

Time is happening, and it doesn’t feel precious (even though it should, I still have two young ones that won’t be young for very long). It all feels very impossible.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCq2UpIICD4/

What we’re up to… November 21, 2024 at 05:30PM

By | #teammikaere | No Comments

On this day 21 Nov 2016. He was so little, hey? I have a million photos of Sam and Kai, but none of me and Kai on this day. I didn’t remember all these moments.

I worry that I’m forgetting. Some things I’m okay to forget (the sheer amount of admin, fighting people for support, for more, the constant fear that he might be declining and heading towards death, the hypervigilance, ableism and inaccessibility, the support services that always assumed I was incompetent and just a Mama to a disabled child). Somethings I’m not, the colour of his eyes and how they changed in the light. His laugh. The way he smells when you cuddle him. How he felt when I cuddled him.

I think that he slept a lot. More than I show in this tiny glimpses. They felt neurotypical as a baby, but he slept the same, if not more his entire life. I feel like we didn’t land on what his body needed to keep him awake, to keep him well, to allow constant and continued engagement. Any moment of engagement felt like such a win, a laugh, a smile, before he fatigued back into sleep.

It’s a mixed bag, raising a disabled child. Living in the after right now is a fierce fight of trying to MAKE IT WORK. Every day, just trying to exist. Organising the things, showering, eating, smiling at the people who also out there, existing (or not, if I don’t feel like it). There is a lot of distraction happening.

I wish he was here, but I also wish with all my heart that he lived without NKH. I wish NKH wasn’t a thing. (I’m working hard to raise money so that it’s not). I wish I could relive these moments with him. To have more. We couldn’t have known that this year would be our last and honestly, it’s agony.

Just… agony.

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

What we’re up to… November 19, 2024 at 10:00AM

By | #teammikaere | No Comments

On this day 19 Nov 2016. Thank goodness for weekends. I was always so grateful when Sam was home and we could be a little wee family of three. The days are long when it’s just you and a babe, I really struggled with just how mundane it was (and then felt guilty for feeling like it was so mundane). I also spent a long time worrying about what his future might look like.

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/

What we’re up to… November 18, 2024 at 07:00PM

By | #teammikaere | No Comments

On this day 18 Nov 2016. Today we had a photographer from ‘Remember my baby’ come. It was organised by NICU, because there were a few moments when things were wobbly and NICU might have been all we had.

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/

What we’re up to… November 17, 2024 at 08:00PM

By | #teammikaere | No Comments

On this day, 17.11.2016. There are significantly less photos now that he’s at home. I guess I was too busy parenting. I remember being intimidated about going outside with him. We were just beginning to get people coming to do home visits. Today was the very first health visitor visit, and later, his first CCN visit. Was he gaining weight? Was he taking his meds? Did have any sign of symptoms?

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/

What we’re up to… November 16, 2024 at 06:00PM

By | #teammikaere | No Comments

On this day 16.11.2016. He was just the most beautiful baby, wasn’t he. That faaaaaaace. I want to squidge it. Today was about figuring out what to do with ourselves. This was before therapy and before I was brave enough to go to classes. It was cold, too. While we were in NICU winter arrived. I’m not sure we even went outside.

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/