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On the pink dummy

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Mikaere still uses a dummy, he finds huge huge comfort in it. He’s even able to ‘ask’ for it by making a sucking noise. At this point, if this is the one thing he can ask for and something he finds comfort in, he can have one as long as he wants it. We’re working on hand co-ordination so he can push it back in if it’s falling out (OT loves the dummy motivation, for sure. We practise putting the dummy in a million, billion times a day).

We use NUK dummies, which conveniently come in several sizes. I ordered some from amazon (using Amazon Smile for Joseph’s Goal). Some cute, gender neutral ones.

However what came back were some cute pink chickens. I attempted to return the said pink ones, but amazon said keep them, and we’ll send out the right ones. Okay, that’s cool. Except the new ones weren’t gender neutral either. It was more pink chickens.

At that point I figure fuck it. No one cares if Mikaere is using a pink dummy, and now we have four of them. Pink dummies, just as good as the gender neutral ones it turns out. Gender stereotypes can suck it.

On Turning Two

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Recently our sweet boy turned two. TWO! Can you believe it? We welcomed the day cautiously, another birthday made. This feels different to his previous birthday – there wasn’t any fear. We were so fearful at his first birthday, that it was the only one he was going to have. That it was the only birthday we were going to celebrate (which is why we went big. Big party. Lots of people. Ridiculous cake and food and decorations and everything).

This year? This year it was quiet. A small family lunch with balloons and bunting and cake. Nothing too fancy. Here’s the thing though, Kaikai is so loved. He got a bucket load of cards (thank you all for your kindess in remembering!) and some sweet gifts from friends. We’re so grateful at the kindness others have shown. So grateful. So grateful he’s still with us, despite our doctors predictions. So grateful that he was well on his birthday. So grateful for his little smiles.

Grateful, and forever bittersweet.  But he’s well loved, and he’s pretty happy and content and right now that’s all we can ask for.

Happy birthday little man. We love you more than anything x

On Special Feeding Onsies

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It seems like a weird thing to follow up with after that last post, but I want to talk about clothes for a minute. Kai spends 90% of his time on his back. You spend most of your time upright. Clothes, generally are designed for upright wear.

When Kai wears a tshirt, or a jumper it slides up and exposes his button. The danger with this is giving him easy access increases the chances of him pulling out his button (not ideal). So he wears onsies which have poppers at the bottom, so they can’t ride up. But most onsies for kids don’t have belly access. Which means we typically have to undress him to feed him, and have the feeding extension come out of his pant leg (not ideal).

So we buy special feeding-friendly onsies. The ones we get from M&S are £6 a pop. It frustrates me that for the same price you can get a bulk pack of onsies with no button access. It frustrates me that M&S sell clothing for disabled kids, but won’t put a changing places facility (a safe disabled toilet for those that can’t self transfer) in their stores (but neurotypical people – hey, they’ve got a whole bunch of toilets for you. Wouldn’t you be mad if a store like M&S wouldn’t provide something as basic as toilets?)

It frustrates me that we have to source fancy feeding tube friendly clothes for my son. I can’t just go into the nearest store and pick something cute up. It’s never that easy. And because there is such a huge demand for feeding tube friendly clothes, so many places are out of stock. No kidding, last time I found a place that has onsies in stock I bought several in the two sizes up, just to avoid the stress of it.

This is just another thing to think about, another added difficulty. Sad face.

Special needs Mum – share with me your favourite feeding tube friendly clothes places. Help me find the good stuff.

Update: I saw a post from another NKH Mum who shared BUTTON HOLES as a tip! If I can figure out how to put button holes in Kai’s onsies, I won’t need to buy ridiculously expensive onsies!

I’m still pondering grief

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Death is natural. It’s as natural as living. We all die, we all know someone whose died and we all will die. One day. I’m mulling over death, and grief. Forever and always, I think. Is our grief compounded because we don’t live in villages anymore, and we don’t see death in our day to day? We hide away death, we have a funeral that lasts no time at all, we eat little sandwiches and say “I’m so sorry for your loss”. And then we grieve in private, smushing down those feelings we have as we try push through as if we’re fine? Untouched?

I wondered if people who work in funeral homes, doctors in the special care units, nurses in hospice, who deal with death on a regular basis have a healthier grief management system. Do they have a healthier emotional grieving process because they’re exposed to so much more grief? (I asked… I don’t think they do. The several people I asked said it was hard, but it wasn’t their personal pain. Plus they felt like they were helping people, making a difference. I guess having a virtuous purpose relieves some of that emotional weight).

As you can see I’m trying desperately to wrap my head and heart around death, considering we’re surrounded by it. Death is happening frequently to kids we know and love.

If death is natural, why do we fight feeling grief? Do I need to fight grief? Do I feel more grief, considering it’s children who are dying? Children we work so intensely hard to keep alive? If they lived longer, would I feel as hard done by? If they lived fuller lives, if they were less disabled? As horrid as it is, when an adult is sick, or has passed in my head I think, as an adult they had the opportunity to live. They traveled or loved or did whatever it is they wanted to do – they lived. They had time, they had years to fill with life. Our kids don’t have the same opportunities.

Is living and loving and having years and years before you die more natural? I think we have the expectation that that’s the order of how things are meant to go. Does that make it more natural though?

It hard to come to peace with loss. Loss is unavoidable, we’re attached to people and things and outcomes and expectations. I feel like grief is the weighted opposite of love. That the love that I have directly influences the grief I have… but if love is a natural as breathing and we feel such deep depths of love for our children, is grief natural too?

My question, I guess, is how do I survive this? How do I protect my heart from all the grief? How do I do that while still being open and part of the NKH community, while still loving all those other little terminal children? And if I’m open, if I’m vulnerable, how do I survive all the losses? The losses that keep coming?

I don’t have answers. I’m feeling what I’m feeling. I’m struggling, hey. The grief, it’s a real thing. Holding my boy a bit tighter today.

On our Seatbelt Medical Alerts

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I’ve talked about medical alert car stickers a while back, for alerting emergency response if there was ever an accident that Mikaere was non-mobile, non-verbal and an epileptic. It says in red Nonketotic Hyperglycinemia, so they can’t miss it. It also says Glycine Encephalopathy so they don’t confuse it with Nonketotic Hyperglycaemia, because you know someone’s in a rush that’s what they’ll read and if I’m not there to advocate for my baby you can bet they’ll test his blood sugars unnecessarily.

Anyway, what I wanted to say is that I found these medical alert seatbelt straps, for both the buggy and the car seat. They live on the straps, so we don’t need to remember them. Inside there is a little card with our details, the basics of his diagnosis AND a link to his medical care plan (essentially our cheat sheet).

It’s such a huge thing, my fear about not being able to advocate for Mikaere. About all those what if scenarios. I feel like we live in that space where all the unlikely things happen (a weird kind of luck?) and I want to give him the best shot I can.

So, seatbelt medical alerts. He’s got one on his car seat, and one on his buggy. A simple easy thing we’ve done to help stave off the worst case. Worth it, hey?

The place we got ours no longer sells them (womp!) but there are other places like here or here.


The Cheatsheet

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We have a cheatsheet for Mikaere. It goes everywhere we do, and is the first thing that’s handed over to nurses at A&E visits or admissions, doctors at appointments or any new therapist we have.

It’s literally a combination of every single question we’ve ever been asked, all the details people want to know, or didn’t know they should know. The nurses love it and the registrars love it too. Our consultants love it because it means we don’t have to go through the medical list and doses one by one. They can take the cheatsheet away, and we can use the appointment time more effectively.

It also means when someone asks something stupid, I know they haven’t taken the time to read the cheat sheet and I redirect them. It saves time. Theirs and mine and means I don’t have to fight to make myself understood, or worry that I’ve forgotten anything.

It’s also been helpful in other ways. The main being it signals that I’m a competent parent. That I know my child, I know his disorder, that I’m familiar with the medicalised setting and establishes that I’m an authority on my child.

It means that when it comes time to discuss an action plan, I’m included in the discussion as it’s taking place, not being told what’s going to happen after. It means when I disagree, I’m listened to, and my concerns are heeded. I can’t tell you how many times we’ve avoided being admitted because the cheatsheet gave me credibility when I’ve said no to admission.

The cheat sheet has just made our lives easier. For those that are interested, I’ve created a template here on google drive.

It’s the small things, hey? Cheatsheets. They make a difference.

On Stat monitors and o2 levels

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There are two little red numbers on the stat monitor, and I’m staring at them, willing them to go up. 92. 92. 92. 92.

92 is too low. I know the guidelines. He’s got to stay above 94 on 1L or less. I check the tank (is oxygen even coming out of this thing? Is there even any oxygen in there? But the needles on green, when I pull out the tube and crank it up I can hear the o2 rush out).

92. 92. Maybe he just needs a minute. I’ve put him down and he’s just fallen asleep. Asleep is when we need to pay attention, when he’s not moving about or working as hard. 92. 92. 92. 92.

Is the stat monitor probe even on correctly? I peel back the blanket to look at Kai’s chubby toes. He’s still, and the little red light is steady and exactly where I left it. It’s not the monitor. 92. 92.

I put the blanket back and reposition the mask slightly, bothering Mikaere in his sleep.

92. 92. 92.

Do I call our nurses? Not yet. I already know they’ll say if he can’t stay about 94 we have to go back into hospital. I don’t want to go onto the ward. I will, if I have to, but I don’t want to. He’ll catch something else there for sure, and I don’t fancy living in a half metre gap along side his hospital bed, sleeping on a plastic armchair that folds flat. With no sleep for anyone, gross showers and shitty food. No thanks.

92. 92….

Do I crank up the o2? Just to see if 1L isn’t enough?

Just as I reach over to the tank, the light flicks to 93. 94. 95. 96.

The relief is overwhelming. It’s not 92. He just needed a minute. I’m on edge, and have been the last few days. He’s back into the safe zone. I feel like I can breathe again.

We’re not in hospital yet, hey? Thank fuck for that.

The winter season

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I literally hate this time of year. Autumn back in September when school went back was hard enough, but now seems every child under the age of five has a snotty nose and a cough. And every parent, and every person that works with children. There are sick people everywhere.

To a neurotypical kid this is no big whoop. For us… it’s a huge deal.

There are so many NKH kids in hospital at the minute, fighting off what would be an everyday cold to anyone else. Their parents and medical staff working overtime to make sure they’re able to breathe, to prevent a snotty nose becoming a chest infection or even something more sinister.

For Mikaere… he’s on his third cold right now in as many weeks. Last week we were in A&E because I couldn’t wake him. He usually has a morning nap from 9:30 to around 10:30, 11.

This time he’d slept past 12. And then past 1pm.

It was a weird one. Mikaere had a snotty nose. Because of his low tone (or even possibly because of his medication) he’s not able to cough the mucus from his lungs up to his mouth, it gets about half way. Awkwardly it’s at the back of his throat and ends up dripping down over his airway.

His body, knowing this is a problem, gags. Mikaere has a super sensitive gag reflex, and this triggers a projectile vomit. Like, out his nose, completely emptying his stomach type of projectile vomit. Vomit shooting across the room kind of projectile vomit.

We suction the best we can, but we have to be careful not to over-suction least we damage his nose (going down his mouth causes a vomit every single time). For those who don’t know what suctioning is, it’s exactly like it sounds. We have a hospital grade suction machine. A bit like a tiny vacuum cleaner. We attach a flexible catheter (like a very very thin and flexible hose of a tiny vacuum cleaner) and have been trained to literally suction out the mucus Kai can’t shift himself. Usually we go down his nose. It’s traumatic for everyone, but is good for him in the long run, so we do our best.

Truth is we can’t stop all the vomiting. We might prevent one in three vomits with suction.

Those other vomits? They happen at any time. Before feeds, during feeds, after feeds. It wasn’t that he couldn’t tolerate the feed. It’s that he couldn’t tolerate the mucus.

The worst thing was that it meant Mikaere wasn’t keeping meds down. If the vomit happened within fifteen minutes of meds, we could regive them and hope he’d keep them down. But he rarely did. We couldn’t regive meds if we didn’t know how much he’d have absorbed and how much he’d vomited.

And so without his meds he became lethargic, and impossible to wake. Even with pain.

However, because he was sleeping, he wasn’t vomiting. He was positioned so his mucus would drip down the back of this throat, to his stomach, keeping his airway clear. When he was lethargic like that, we could feed him and give him meds. Which would improve his levels, so he’d wake up again and we’d be back to the mucus vomiting.

It was weird and cyclic, and we were in and out of the a&e while we tried to figure out what was going on.

That’s what happens when my kid gets a snotty nose. That’s not a chest infection or anything serious, that’s just a snotty nose and a cough.

Which is why we’re so particular about illness. About people not visiting if they’re ill. About not visiting others if we know they’re ill. About people staying home from work if they’re ill, even if you “feel okay”. If you feel okay and you pass it on to Sam, there’s a good chance Sam will pass it to Kai.

(So sidenote: people of BV, stay away from Sam when you’re ill. Don’t go into work, work from home. Please).

Illness and colds are huge right now. Hate it. This time of year can suck it.

On the isolation of the special needs life

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Over the summer my world got bigger, just for a moment. Sam had some time off, which meant that we could split caring for Kai. It meant some time for me. I worked, for a bit. Travelled some. Essentially I stepped away from the special needs life into what felt like taking back a bit of my life.

And I’m struggling to step back into the special needs world. Don’t get me wrong, I love Mikaere, with every fibre of my being and he delights me like no other. I love being his Mum.

But in the special needs life, I’m not just his Mum. I’m his nurse, and his chef and personal assistant and therapist and every moment is about monitoring and repositioning and anticipating his medical needs moment to moment. Watching the time for his meds, blends, flushes and sterilising. Repositioning him upright so he can cough, watching for those tiny moments where I can interject baby led physio, and a lot of the time not baby led Physio or OT or laser therapy. Keeping him entertained, or settling him to sleep.

It’s making myself smaller to fit into the very intense schedule of his day, managing the nurses and therapists and remembering appointments and chasing the thirty or so different things we’re currently juggling.

It was hard to leave Mikaere with Sam so I could have some time. It felt selfish. At the same time, it felt like falling into an oasis after walking months in the dessert. I got to speak to people outside of our nurses. I danced through some side hustles. People talked to me as if I was a competent adult. I didn’t have to fight anyone. I found some independence for me.

And now, making myself smaller, putting aside myself for the same same mundane, for the small moments, for the intensity of Mikaere’s day to day. I’m having a hard time with that. I find it hard to get moving, I’m leaning heavy on Sam and I’m spending too much time in the ‘what if’ daydream.

Most neurotypical Mums, they get to go work (or not, if they don’t want to). They can leave their kids with babysitters and have nights out with their partners. They can travel with their family. They can take public transport and take their kids where the crowds go. Their kids, eventually, grow to be somewhat independent. Where they can play without you sitting right there to make sure they don’t have seizures or aspirate or vomit or whatever else might go wrong.

I’m whinging, I know. The special needs life sucks so hard for everyone.

I read a book once, a fiction something a rather, where they played the champagne game. They’d open a bottle of champagne and bitch, for a moment. And then say something they were grateful for.

I’m gutted that I can’t go back to work full time, but I’m grateful we have the means so I don’t have.

I’m beyond gutted Mikaere lives a life less than the neurotypical life, but he’s here and he’s happy and content and I love him.

I’m sad that when we travel, it will always be split – Sam, Mikaere and I are unlikely to travel together internationally (boo immune vulnerabilities and planes), but I’m grateful that this summer I’ve had the chance to visit some phenomenal places, bucket list destinations.

I’m sad that our family doesn’t get to walk the neurotypical path, but I’m grateful I have a family, and we’re all well loved.

I’m sad I’m going back to my day to day with a heavy heart, but I’m grateful my day to day is still there to go back to.

Hey ho. Onwards we go.

On normalising death

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There are a few NKH kids right now who are struggling. Who are at home and ill. Who are in hospital on the ward. Who are in hospice, on what the doctors say is towards the end of their lives. It’s hard, being in a virtual community, physically so far away knowing these families are hurting, that these kids are suffering.

There are also many children who have fought their fight with NKH, who have gained their angel wings and are no longer suffering. Their families are still grieving, though. Still hurting.

And I say all these things, but I don’t have words for how deep the suffering is. How truly intense and horrific it is. I don’t have words for that kind of anguish.

I struggle. I don’t have words and I think this is all coming out wrong – how do I talk about this? How do I talk about the tears and the emotions just below the surface? How I’m constantly grappling with how I feel, with grief. Is it a relief for all the children who have passed? Will it be a relief for the children who are suffering right now, considering how much pain and hurt there has been in their lives? Is there relief for their families? Will there one day be relief for us?

Because that’s the thing, I can’t comprehend Mikaere dying. I can’t. But he will, one day, because NKH is terminal.  I don’t want death to visit us. I don’t want death to visit any of the families that are waiting for it right now. I don’t want the curtain of grief to envelop any of our NKH families. I just don’t.

And I feel powerless to help. The families who children have passed, the families that are struggling.  I don’t feel I can bring comfort to them. I don’t know how to support them. I send messages to let them know we’re thinking of them (and I am, all day every day) but it feels… inconsequential. I feel powerless to help our little family, and the endless waiting and fear for the terminal end.

There have been a few times we’ve waited for the news. A handful of times we’ve sat, anxiously waiting for that call, to hear when another child gained their angel wings. We’d send love and thoughts and cry. We’d talk about organ failure and seizures and that respiratory arrest is more likely to happen before cardiac arrest. We talk about the dignified death bill, and slower than slow breathing rates. We’re normalising the lead up to death.

I hate that this kind of conversation is normal for us now. That we as parents fight so hard to keep our children happy and healthy, and that we’re powerless in the end to stop the pain and suffering that comes with NKH.

I hate that our days with our kids are tinged with the word terminal. That sometime in our future with Mikaere we’ll be in the same position. That we’ll, one day, be watching his organs fail and be witness to his pain and his suffering. To his death. Just like other NKH families are right now.

I’m heartbroken. I’m absolutely heartbroken.

I’m talking about death and dying today because November 2nd, was NKH Remembrance Day. I’m late by a few days, but I want to pause and remember our NKH kids.

I want remember Alexander, the sweetest little sausage there was. I want to to remember Kaleb, and his cheeky grin.

Gregory, and his brother Elijah who is missing him. Halle Mae. And Cathryn. Maynak. Siem.

There are actually many more children. There’s a list. A list of 124 children who have died from NKH whose names should be remembered. There’s a slide show, even. And I started reading the names… there are so many names. Too many names.

And I’m aware that these names, they’re just the ones in our NKH group. They’re just the ones we know about. Other languages, other countries… they have their own groups with children who are dying before their time. They also probably don’t include the families whose babies died before they could even find support in the NKH groups.

Too many names. Too many children.

I don’t want them to be forgotten. I want to remember them, I want their families to know I remember them. To know their names, and their faces. They made marks, they made a difference. They were loved.

I held my little guy a bit closer today while I remember the others. And I think about how all of those children were so loved like I love my little guy. So loved and cherished. NKH can suck it.