Tag

grief

Apr 04
1

Fly High, Sweet Halle Mae

By | #teammikaere | No Comments

It feels surreal. I’m having dinner with Sam, Mikaeres asleep in the crib nearby and everything is just going onwards as if it’s just a normal day. We’re talking and discussing the weather. It feels surreal because I know, up in Manchester there’s a family feeling all the grief and pain and missing their sweet baby girl, as today they laid her to rest.

I’m devastated for them. I sobbed when I found out she’d passed. Which sounds weird, because I didn’t know the family well, only in the NKH circles online. But it hits home because this sweet girl was only two weeks younger than Kai. Because NKH is horrific and I feel like we’re all waiting for our turn. That one day, NKH will take Kai and it will be our turn to feel the grief and loss and pain. I sobbed because when we lose an NKH baby, the entire NKH community feels the loss. It reverberates around and we all grieve. She was one of ours, and one day it will be Mikaere.

We work so hard to keep Mikaere safe, to minimise the risk and give him the best possible shot. All NKH families are doing this. But the truth is that Nonketotic Hyperglycinema is terminal.

This is why we fundraise. The idea of a viable treatment is what gives us hope, that Mikaere won’t be taken from us and we’ll get to enjoy a future with him.

Please help us find a cure. Please help us fund research into NKH treatments. Please donate, or buy a book.

Please help us prevent our babies from dying too early. Because our kids are, genuinely, they’re dying.

Fly High Halle Mae. You were so loved and you’ll be sorely missed.

Mar 23
1

On Getting Underway

By | #teammikaere | No Comments

I was left standing the waiting room with a handful of my babies clothes and his dummy, my heart in my throat. Walking away was rubbish, watching four strangers crowd around my baby, looking so little on the giant adult sized bed, blue gloved hands busy attaching probes and doing medical things as Mikaere lay there unconscious as we were ushered out the door. Leaving was hard. Trusting them to do their jobs and their jobs well when my little guy was asleep on the table… difficult.

I was unprepared for the leaving part. We’d been waiting so long for this all to finally go ahead, that I was more focused on tee-ing everything up, half believing it would, again, be postponed that when it was go time, I was unprepared. But there you have it, after months and months of waiting my son was right this minute being put under and I was being gently  pulled out of the cubicle.

I wanted to cry when we left him and I almost caused a motherly fuss – my fear was overwhelming. (I don’t know exactly what I’d be fussing over, the right to stay? It doesn’t make any sense, because I know we’d never be able to stay. Emotions – not always logical).

There was a girl on the ward last night, while Mikaere fasted. She must be 18, young enough to be on the paediatric ward but old enough have a 1 year old of her own. She’s dislocated her jaw and has all the fear about the pain of having it reset in place. I overheard a lot of her fears and anger and confusion. Hours of it. She desperately wants to see her baby but can’t get over the fear of the pain that comes with having her jaw reset. And until it is, she can’t leave the hospital.

I’m not getting down on her, because I was there when they tried the first time and I heard how that went. But at the same time, I think the moral of the story is there is a choice. A short, sharp spike of pain and its done – no more pain, or a long drawn out pain while you wait and sit with your fears and fuss.

The main thing for me was how her fuss made things difficult for everyone else. For her family, for the nurses who were trying their very best to help her with her pain, the consultant who was on hand if she wanted to try. Us, and everyone else in the room who silently listened to her process all the things.

And as I sit in the waiting room for the first of this long drawn out waiting process of my own, I feel like it’s best to just get on with it. Waiting is rubbish and my fear of it all going twisty and wrong is high, but there is no point making a fuss. I don’t want to be like that girl on the ward going on and on, when I have the power to emotionally move myself forward.  So instead I sit quietly and write you guys a blog post.

Mikaere’s under the general anaesthetic and is having an MRI. Up next, gastrostomy. I can’t sit still and I keep repeating that Mikaere will be fine. He will be. And I wait for the MRI doors to open.

Mar 08
0

On the superstitious good things

By | #teammikaere | No Comments

There’s this thing about good times. When things are good, I feel like I’m holding my breath waiting for them to be not good. Like I’m waiting for the other shoe to drop. I’m told this not uncommon when parenting a child with a progressive disorder. When you’ve been on end of life and expect to be again, any good time is by nature of NKH, temporary. A nice, tiny haven where you ache to be with every fibre of your being, knowing full well you can’t live in the realm of ‘everything will be okay forever’.

So Mikaere recently enjoyed a good period. I got a bit superstitious about it and didn’t want to say anything in case it jinxed it. This makes zero logical sense and I know that Kai’s wellbeing does not hinge on whether I say he’s doing well or not. Nonetheless, there a words we don’t say unless we have to, and when we do we touch wood. (I’ve never been more superstitious in my life – when there are big, important things you can’t control you find ways to make yourself feel better about them).

So. Let me tell you a big thing. Mikaere hadn’t had a seizure since before Christmas.

Until last week.

I can’t begin to tell you how we watched him progress with no seizures. How his eyesight got better, how he started sleeping through the night, how his tone improved, how we saw more smiles and how he started vocalising more and eating better. Doing everything more and better. When his brain wasn’t fighting seizures it was developing. With new skills and new all sorts.

We don’t know why the seizures stopped. It could be he was well. It could be the medications were bang on. It could be the neuroprotectant meds we started. It could be that the planets were aligned or the sands were blowing east in Africa.

We don’t know and that bothers me. If I don’t know then I cant replicate it. This giant balancing act we’re constantly managing, we’ve hit on a magic time and I don’t know what we’ve done. Maybe we didn’t do anything. Maybe this is something we can’t control.

I hate that idea, because now the seizures are back and I don’t know why or how to stop them.

The first one I just caught out of the edge of my eye and I wasn’t convinced it was a seizure. It could have been a stretch, or a twitch. The second one was unmistakably a seizure. Fuck. Fuck fuck fuck fuck fuck. I don’t even know how to explain the despair. That terrible sinking feeling, the ‘here we go, battlestations’ type familiar mentality you have when your baby has frequent fits.

I’ve spent hours pouring over my notes of his meds, all the activities we’ve done in the last few weeks to figure it what was going on. Was his meds off? Had he outgrown his meds, has he put on weight or lost weight? Was he in pain? Was it something he ate? Did I feed him something with unlisted ingredients that he’s reacting to? Was it something I stored his food in, did something leach? Did he have a temp, was he ill? Was he teething? Is this NKH progression? The constant back and forth and second guessing.

And then the constantly whirling questions about the affects of the seizures. Was Mikaere going to lose all the skills we’d been working on? Was he going to lose his developmental momentum? Were we going to back to sleeping in shifts and constantly on guard? Was this going to slip down into something more sinister?

I don’t know. It’s tough not knowing. I did what I could, which was check and recheck his emergency meds, the rescue medication. I settled in the counting and timing and comforting after each one. I became paranoid about leaving the room, and would even move him into the bathroom with me if I had to use the facilities.

I just, I hate this. I hate that my baby is suffering seizures again. They’re so disorienting and horrible for Mikaere. They mess up our days and we’re all out of routine.

And then it got worse. The seizures started clustering, and we started having to give emergency rescue medication. I cried the first time, as a gently administered a round of midazolam. Kai’s grandad once told us that it’s midazolam they use the euthanise whales that have stranded themselves. I hate sedating Mikaere. I hate watching him slip into that groggy fog, I hate watching him fight to stay conscious. I hate watching him seize more though, so I do it.

But then he seized again, multiple times. And throughout the day I was using more and more rescue meds.

And I realise that this is exactly what I worried about in the good times. That we’d end up here, multiple clusters of seizures, having to use emergency rescue meds, watching my baby suffer continuously and not knowing what damage is happening to his little brain.

Seizures are horrific. NKH is such a bitch

—-

I know I’m always asking. Help us find a cure. Donate, or buy an Eva book if you’re able. Every bit helps.

Jan 31
0

On Mikaere’s path at Mikaere’s pace

By | #teammikaere | No Comments

It’s been a while since I’ve seen our friends with babies. My NCT friends have all gone back to work and their babies are all in nursery or with nannies. Our other friends with babies – they’re in the process of going back to work too. Which means that weeknight visits are tricky, because they eat into family time. As do weekends. Our catch ups are now scheduled weeks, months in advance. Gone are the casual, spontaneous semi-regular catch ups.

That’s tough. I miss them.  Partly because they’re wonderful people, but partly because without them and their beautiful babies I forget.

When it’s just us, we’re in the Mikaere bubble. We can only see his path that he’s wandering down at his own pace. Smiles are frequent and his vision is getting better and his tone is improving. All positive positive things. At Mikaere pace this is all positively break-neck full speed ahead.

But then I see a child Mikaere’s age and their developmental milestones and I’m heartbroken. It’s hard not to compare, despite my attempts not to. But it’s hard not to grieve those what-could-have-beens with Mikaere. He’s not doing any of the things they are. He’s worlds away.

There was this little child the other day – in a café. Younger than Mikaere. And this child was so different – handing things back to her parents, shaking her head, pushing things away for no, smiles for yes. Standing on tip toes to peer over the back of a couch. Curious, and alert and aware. It was like Mikaere’s peers took several giant leaps forward while I wasn’t watching and I was blindsided.  The grief is overwhelming.

The other thing is that with Mikaere’s current developmental level – it’s easier to manage emotionally when he was little and tiny. Babies don’t typically move about anyway.  But as a long legged, skinny boy, I can see his body is made for running and moving and going. And Mikaere wants to wriggle and move. But he physically can’t do that. Not yet. Possibly not ever. And the bigger he gets the more difficult it is.

This grief, I’m beginning to see it’s never going to go away. It’s cyclic, ever present.

And it sounds selfish, but with seeing our NCT and baby friends regularly – I couldn’t be blindsided. We were constantly catching up, so small developmental leaps were easier to manage. It’s just how it was. It’s the space and the distance that make it difficult. The surprise.

I shake it off and love on my kid, knowing his path is his own and willing my mushy insides to get on board with the unconventional path we’re walking down.

Hey ho. As I cheer Mikaere on, I’m pretty sure I’ll always be feeling this grief for him.