Oct 05
0

Please stop telling me how strong I am

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Please stop telling me how strong I am. Please stop telling me how amazing I am, how great a parent I am for managing ‘so well’ under such difficult circumstances.

I’m not doing anything any other parent does. I love my child, and I do everything I can to ensure he’s as happy and as healthy as he can be. Just like any other parent. Ours days are a nuanced expression of both joy and grief, frustration and fear alongside victory and hope all at once. I delight in my sons smiles as much as I grieve that smiling may be all he can do.

When you tell me how strong I am, you make me feel like I can’t tell you that I’m struggling. I can’t tell you how overwhelmed I am, I can’t tell you when I need help. I can’t tell you that we’re having a really hard time and that I feel so alone and isolated. I feel like as a caped crusader of strength I can only smile, take your platitudes and say ‘We just do the best we can’. I feel like I can only share the battles we’ve won, I can only share the good and not the nuanced whole picture.

There is a guy at Sam’s work who has an adorable baby who has sleep difficulties. He’s having a hard time managing, understandably, as would anyone who is sleep deprived.

Except that this guy literally said the words “I don’t know anyone who has had as hard a time as we have.”

This guy has met Kai numerous times. This guy whose child has never been in hospital outside birth, never been on end of life care, or on a ventilator to breathe or in ICU. This kid who has hit all his milestones and grins and plays with his toes. This kid who is perfectly healthy in every way. He goes to bed at night and wonders if his kid will sleep more than a few hours. I go to bed at night and wonder if we’ll end up in hospital before morning arrives.

This guy is in his sleep deprived bubble, and he gets to tell his friends about how hard it is. I, on the other hand, get told how strong I am, which stops any venting, any kind of sharing of the real difficulties I’m facing, the emotions I’m having a hard time processing. It isolates me.

This in part is why I blog. It gives me an outlet, passive sharing. No one can stop a blog post half way through with ‘but you’re so strong!’

But passive sharing is lonely. It’s a one way street where I broadcast out to you all. I don’t doubt I’ll get a few comments about how strong/amazing/great we are.

So please don’t. Please don’t tell me how strong I am, or how much in awe you are of how we parent in the face of adversity. Instead, ask what we’re struggling with, ask what we’re loving. Ask if we could use a visit, or just call for a five minute catch up. Just check in, a two minute FaceTime to say hi would be game changing to my otherwise very lonely, very isolated day.

Let me share, in a moment just between us how I am, and then I’ll move it on, I promise. It might be heavy, it might be light. But please, please, please, stop telling me how strong I am.

Oct 03
0

On the helmet

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Oh the helmet. What a mission that was – trying to keep Mikaere cool in the helmet was such an ongoing effort. We’d pull it off at the first sign of sweat (because we know an increased temp causes an increase in seizures). We’d spend forever positioning fans and taking off or putting on clothes as he got too cool or too hot. And every time I’d tell myself it’s worth it. The helmet is worth it.

You wouldn’t know it for looking at him, though. He still has a flat spot, and a bit of a ridge. But you guys – my eyes aren’t very good a telling apart a shape with millimetres difference from week to week, but numbers don’t lie. Every few weeks we’d go back and while Kaikai’s head was still growing, there was be a millimetre or two difference. Like I said in that initial post it’s going in the right direction.

Going in the right direction for us is huge. It’s HUGE.

And it’s huge because before Mikaere wasn’t able to turn his head past the ridge he had. But now? Now he can. Now the ridge has been reduced slightly, enough that he doesn’t need as much effort to turn his head. Do you know what this means? It means his muscles were building up evenly on both sides of his neck. It means he figured out he *could* turn the other way, and did, frequently. It meant that he was no longer restricted!

How huge was that?

Even better is this week Mikaere’s fontelle closed. With the closed fontelle the helmet couldn’t do it’s job anymore and we were done. DONE! We went for the final scan and after that – NO MORE HELMET! I’m delighted. No more stinky helmet hair or worrying about an increased temp or sweat or sterilised wipes for cleaning it down. Don’t get me wrong, the helmet was absolutely the right choice for us. For sure. I’m glad we did it. So so glad.

Even better when we got the final report back, the results were staggering. The Cranial Vault Asymmetry measures the left and right diagonals (meaning, front left to back right, and front right to back left) 30 degrees from the centre point. They take the two measurements, and minus one from the other. That difference is the Cranial Vault Asymmetry.

When we went in, the difference was 24mm. When we left, the difference was 14mm. 14mm!!! That’s huge, and there is so clearly an improvement.

I’m still annoyed the NHS told us it was cosmetic only and they don’t treat it – that was not true for us, the cosmetic only part. I wish I’d gotten a second outside-the-NHS opinion earlier. It could have been solved much earlier and maybe Mikaere would have made gains earlier… but if I’m wishing things, I’d also like to wish for a cure for NKH.

Hey ho. We got it in time, we had a good seven month run of helmeting. And now Mikaere has a slightly more rounded head with a smaller ridge that he can turn.

The helmet was excellent for us, I’m glad we did it. But also – high five!! Helmet treatment finished!!

Oct 01
0

On the wine tasting

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Gosh, the wine tasting! We tried changing things up this year, but to be honest – this year’s wine tasting was a bit of a shambles. We were stretched in the weeks leading up to the wine tasting (having been away) and there was a bunch of things we didn’t do well (we forgot to ask for volunteers till the day before, we did it in the middle of the summer when most people were away, we gave everyone late notice etc etc) but despite the shambles, oh my days, what a great day.

This year instead of one giant tasting like a show, we had three small ‘stations’ where everyone stopped by as they went, with bubbles to start. It was a blind tasting, so each station had two wines, there was a Rosé station, a white station and a red station. Considering the heat of the day (thanks crazy heatwave) we did a chilled red (!) which was pretty fantastic. I obvs. loved the Rosé but I enjoyed the fizz and the chilled red too.

It was lovely to catch up with everyone as they came through – there was plenty of wine and we played a lot of ‘water vs wine’ (such a fun easy game). It was small, we intentionally kept the ticket sales small (and manageable!) but we had about 25 people come, we sold lots of wine and oh my days, there was lots of love.

On the day we raised £450 which is a phenomenal effort. Thanks to everyone who came and bought a ticket and drank our wine. Every single pound has such a profound affect on the research that can be done. All of those funds have been sent to Joseph’s Goal, who will send it along to Prof. Nick Greene for NKH Research. Honestly – thank you for the support for everyone who came with the crazy amount of love – thanks to you we’re making change. These funds – they give credence to what we’re doing, they give meaning to Mikaere’s life – he’s making a mark on the world with every single pound we raise in his name. I often mull over why we fundraise, and right now, that’s it. We want our son’s life to having meaning, to have made a difference. We want him to contribute to the world, and oh, how he is.

We’re lucky that we have this outlet in which to do that, so thank you for the love and support. You guys are the best x

Sep 28
1

On the eye gouge

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I woke this morning just early enough to do handover with our nurse, but I could already hear Mikaere grizzling. It was a rough morning, nothing would console him. We cancelled our morning appointments and hunkered in for some hardcore settling. At some point between the singing and the bouncing and the petting, I noticed that in Mikaere’s right eye there was a scratch. Literally, on the lens of his eye. Wtf.

Mikaere’s recently been able to reach his face with his little hands and usually he goes for his mouth (his aim is a bit shaky, sometimes he makes it, sometimes he doesn’t). I rang our CCN (our Community Care Nurse – our first port of call always) because wtf. Should I be concerned? Does he need drops? Will it heal? (Do lenses heal?!) I had no idea. I can talk to you all day long about bloods and metabolic process systems but eyes? I don’t know very much about eyes.

Essentially our nurse said you don’t mess around with eyes, so we should go to the urgent eye clinic, but we needed a gp referral letter first.

Blah. We don’t go into our gps office (exposing Mikaere to sick groups of people in waiting rooms is something we try to avoid) so I called to organise a home visit. Except, after speaking to the oncall gp (a delightful Dr Bailey) he said he didn’t need to come out to verify there was a scratch on his eye. If I said there was a scratch there was a scratch, so without much drama he emailed us a referral letter (this is why he is considered delightful – it’s so nice when our team makes things easy for us).

Armed with our letter we made it down to the hospital… only to find out that the morning clinic had ended five minutes earlier and we’d have to wait for the afternoon clinic an hour and a half away. Womp.

Also, Mikaere needed a feed and I’d forgotten the hot water in my rush to get out the door (fail). So, back to the car with all his gear and we drove through the nearest McDonalds Drive through where I got a tea with no teabag (because apparently they won’t sell you hot water – what a day). Feed and meds done in the car park, drove back to the hospital and back into the eye clinic. Eye clinics are my favourite – the people at eye clinics aren’t sick with nasty chest infections. You can’t catch eye problems just by being in the same room. Look at all the otherwise healthy people with no respiratory problems! Best waiting room ever.

I spent the next 45 minutes trying to keep Mikaere awake (which was fun for everyone) and then we saw the doctor. She did her magic with some eye drops (top tip, pull the bottom eyelid away and let the drop fall in the well you’ve created – MUCH easier than trying from the top eyelid!!) and using her UV light the scratch light up like a neon line across his eyeball. (Again, wtf).

Essentially, The doctor said he had scratched his eyeball. Probably with his nails (!) and it probably hurt like a paper cut, but in his eye (!!). She said it would heal (thank goodness) but in the meantime she’d provide drops to make sure it didn’t infected and to keep his fingernails short.

What a day. So, we went home armed with drops and now I spend all day yanking Mikaere’s hands away from his eyes. Eye gouging. I still can’t believe it.

Sep 26
0

On grief

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It’s taken me four months to post this. I don’t know how to talk about grief. I don’t know what to feel, or what’s appropriate. Is there an appropriate way to grieve? A beautiful baby boy has gained his angel wings. He didn’t have NKH, the underlying cause of his disability wasn’t diagnosed. But he was part of our special needs playgroup. He was in our Monday morning gang.

I feel so all over the place. In the beginning, I cried endlessly for this small sweet boy. But I felt out of sorts, grieving, because I also feel like I’m so far removed from their family, because it’s just a playgroup, but honestly I’m devastated. For him and his family. Is it inappropriate that I feel an inordinate amount of grief for him? Is it even inordinate?

I cry for us, too. Because I feel like, despite my best efforts, I’m now constantly looking out for signs that Mikaere is on the precipice of an acute deterioration. For the longest time, I felt that genuinely he wouldn’t pass, that all the doctors were wrong and he’d have years ahead of him. That the ‘terminal’ part of his disorder was just a label, but not really one that applied to Mikaere. But now the sweetest little boy who should be here and fine is not. And the word ‘terminal’ as it applies to Mikaere has taken on a new, scarily finite meaning.

I was unprepared for the grief I feel. The shock of it. It feels messy and all over the place and the big overarching and devastating truth is one day it will be us. It colours my grief, which perhaps is why even the merest thought causes a moment of tears.

I’m so overwhelmingly filled with compassion for this little family. But I don’t have words and I refuse to say the platitudes. I don’t want to add to their grief, so I grieve privately. And then I feel like my grief must be minuscule compared to theirs (which just seems unimaginable and huge and so unfair) and should I even be feeling this way considering how tenuous our link? A link which I’m absolutely gutted will be no more, our after group catch-ups will be done now.

Grief is messy and I feel like I’m continuously finding new depths in what I feel about death and terminal disorders. I’m all over the place. Everything feels huge and bitsy at the same time. Like I’m trying to fit the uncertainty ahead for us and the unfair and too early deaths and all of the it-wasn’t-meant-to-be-this-ways together but the puzzle pieces don’t fit, so it’s all jagged and confusing and what do I do with all these feelings I have?

I spend hours thinking about the nature of grief. Of disbelief and how when you think you’re okay it smacks you in the face. Of how our therapist talks about snakes and ladders and shock. How you can’t know, hour to hour day to day how you feel (will you go up a ladder? Down a snake?). How I read somewhere that your grief doesn’t diminish with time. It’s that your life grows as time passes and it becomes easier to manage. I wonder how we’re meant to grow as people when our live distils down to our special needs baby and his needs. Our world revolves around Kai? How do we outgrow that? How are people meant to grieve and grow?

I sometimes think about that Frank Turner Song, Long Live the Queen. The line goes “We live to dance another day, it’s just now we have to dance for one more of us.” and I think how I’d want to live extra for everything that Kai couldn’t. And then I think back to what our therapist said, about living in the moment, enjoying the moment. Acknowledging where we are but also not denying ourselves fun and happiness right now. Choose joy, she said. I think about how hard it is to enjoy the moment when your future is so uncertain.

A friend told me once that something more than momentary happiness is intertwined quite heavily with three things, are you safe? Are you connected? Are you heading towards a purpose?

It’s hard to apply that to the special needs life, because my family isn’t safe (with a terminal disorder, not really), we’re constantly trying to manage the giant span between those with neurotypical children (the life we expected to live) and the highly medicalised special needs life, and we’re heavily isolated in the world of medical everything, and my purpose for anything other than Mikaere switched off the moment he was born, and as a special needs Mum my purpose only lasts as long as Mikaere is with us.

So, enjoying the moment feels like we’re trying to cling to the good the best we can while we wrangle with the idea that the larger building blocks of more substantial, satisfying happiness is generally denied to us.

My thoughts are all over the place, I keep jumping from one metaphor to the next, as I try make sense of it all.

Really the special needs life is utter shit for all involved.  I feel like enjoying the moment is to accept the shit, to accept that we’re headed for heartache, and I can’t do that. We’re essentially struggling with a life of grief and uncertainty and hardship and I don’t know how to feel about that. I just don’t. Instead I’m desperately trying to make time for the small moments, the moments with Mikaere where he’s feeling joy. I feel like I’m trying desperately to enjoy every moment with him, but it’s hard to relax when I’m so worried.

I feel like I’ve been thrown into this whirlpool of grief and terminal disorders and it’s overwhelming. But when I distill it down, mostly it’s been a time where I think it’s beyond horrid this sweet little boy gained his wings. And I’m so sad for his family, so upset at the loss for everyone who knew him. I hope he’s at peace. I wish his family peace and relief in the face of profound grief.

Fly high Rauirí. You were well loved and you’ll be fiercely missed by so many. You had a huge impact on our world.

(Even saying that doesn’t feel enough to convey the emotions I have for this whole situation. There are no words to convey the complexity of this kind of grief).

—-

Fourth months on I still feel as strongly as I did when I wrote this. But the upside is that I still see his Mum and I still remember Rauirí on a regular basis. I think of him most days. Grief is a multi-faceted crazy thing, and we live within it. The special needs life is such a bizarre life to live. If you’d like to donate, Rauirí’s Dad was raising funds for Small Steps with an epic bike ride with his work here or the family asked for donations to Shooting Star Chase, Rauirí’s hospice.

 

Sep 24
1

On vision

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In the last few months Mikare’s vision has become more… pronounced? He’s able to see more, he’s LOOKING at more. Before he was quite… disengaged? Is that the word? It was as if he was using his ears to ‘see’ rather than eyes. It was hard to tell what he’d react to, because he doesn’t stare really. It’s hard to tell if he’s focusing or not. His head is constantly moving, so there’s no prolonged looking in one direction. But small things would give it away, like Mikaere wasn’t really able to see you unless you were right next to him.

We did lots to help his vision – namely large black and white cards were up everywhere – in his crib, by his changing matt, in the buggy. I’d put “CVI” into the search box on youtube on an iPad and put it in his crib (I liked this one best). We’d hang black and white toys from a microphone stand to dangle above his head. We move objects with lights or bright colours slowly into his field of vision and across to the other side in the hope he’ll track. We even got referred to the local Vision Support team, who started working with Mikaere every two weeks.

I can’t say for sure any of that helped – for a long time it felt like we were doing the same things over and over with little to no progress. The problem is that we didn’t know what Mikaere could and couldn’t see. We knew from the eye test that there is nothing wrong with his eyes. We knew Mikaere could see some things, but what? We don’t know. If we don’t have a baseline, how do we know it’s improving? Do we keep going? Do we stop? Does it make any difference at all?

And then we had a period with little to no seizures, no illness and something shifted slightly. It wasn’t a sudden change, it was gradual thing, like noticing Mikaere turn his head if someone moved down the other end of the room. He might point his head at an object, turn away and then batt at the exact right position with his hand.

Our therapists (who had the benefit of distance) started commenting how much aware he seemed. He began doing things like opening his mouth in anticipation of food, or turning his head when he didn’t want to eat what we were offering. Turning his head much more. He’d cry and stop when we approached him. Small things.

We’re still not clear what he can see, and Mikaere doesn’t stare, or track the same way we do. He won’t look and reach at an object at the same time, but there is some visual mapping happening.

We still don’t know what he can or can’t see, but there’s a definite improvement, and that’s something.

Sep 21
1

On saying goodbye to Alexander

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Alexander was the very first NKH child we ever met. We were in hospice on end of life care and they drove up, from over an hour away to meet us. He opened our eyes to what was possible. That we might survive that stint in hospice (we did) and that life with NKH was absolutely possible.

Since then we’ve made a point to spend as much time as we could with them. We drove the two hours for their Halloween party last year. When he was in hospital I drove down again. Earlier this year when they were in a London hospital, I armed myself with delicious takeout  and we sat around his hospital bed catching up. Earlier this year we did a meet up with Eloise, Neil and Doms as well as Kirsty, Jon and Alexander. What a fun day that was.

Alexander’s beautiful, with the longest eyelashes you ever did see and the most piercing blue eyes. He’s got such presence. His parents have been an amazing source of comfort for us. They’ve been our cheerleaders, they’ve been a wealth of information. And they’ve also been fun. Jon is into Formula One like Sam, and when Jon stayed at ours instead of the hospital they flew drone simulators together.

They love their son with such overwhelming fierceness it gave me hope for what life was going to be like with our son. That it was possible to live on fierce love, that it was possible to survive all the adversity on love alone.

Earlier this week Alexander died.

Devastation doesn’t have enough meaning to explain the hole he’s leaving in so many lives. The giant hole he’s leaving in ours. Alexander was a fighter and he fought such a phenomenal fight. He dictated how things went right to the very end, and was a phenomenal, phenomenal person.

He is so loved. So so so loved. So many of us are broken and the world seems like a darker place without him. Alexander will be fiercely missed.

Fly high Alexander. We love you.

Aug 20
3

On rolling

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We’ve hit another milestone – Mikaere rolled over today. From his back onto his left side.

Mikaere ROLLED OVER! Onto HIS SIDE! BY HIMSELF!

I can’t even begin to explain our excitement. The first time I saw it I thought it was a fluke. He’s been very wriggly recently – a little tiny worm as he wriggles about the mat, but always on his back, with shuffling his hips from side to side to get around.

This is the first time we’ve seen him roll. Intentionally. With something we haven’t explicitly spent hours and hours teaching him. My baby can roll!!

It’s the small things, hey?

Aug 10
1

On having the best of friends

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Good friends of ours (possibly some of my favourite people ever) live overseas. They’ve loved on us from a far and loved on Mikaere when they’re in London. A few weeks ago they hosted a murder mystery fundraiser for #teamMikaere. You guys – I’m jealous it wasn’t here because it looked absolutely AMAZING!

Phe and Dom hosted dinner for 10 of their (incredibly generous) friends. They did a short intro about Mikaere and why they were fundraising and holding a murder mystery event in lieu of running marathons or walking cross country like some of the other epic efforts (which made me laugh – I love they did an eating/drinking event. Phe and I once tried to run together and both of us I think decided walking was more our preferred pace).

Set in 1967 the Champagne Murders was accompanied with a very terrible fake Austin Powers DVD random clues and scripted characters. Apparently there was a lot of heated debate while they picked apart the clues and pointed fingers at each other as the potential murderer (which I also love – as a big Mafia/Secret Hilter fan I love a good Kangaroo Court!). With a lot of food and free-flowing booze their very generous friends raised a phenomenal 3,000QAR, which is roughly £633!

Isn’t that one of the most amazing things you’ve ever heard? I’m continuously overwhelmed with how our village has come together, and still does – months on, to fundraise for us and love on our family. So a big giant THANK YOU to Phe and Dom. We love you guys more than you know.

Aug 08
1

On reusables vs disposables with tube feeds

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When we finally left the hospital and Sam and I were finally able to parent, one of the first things I did was switch to reusable nappies. We used baby genius freetimes and they are AMAZING. As convenient as disposables and easier to manage (mainly because I never had to leave the house for nappies, all I had to do was a load of laundry). Overall I felt pretty smug that we were doing great things for the environment and that our nappies weren’t ending up in a landfill.

Except that now we have the gtube, we’ve changed his feed a bit (high five for the blended diet) and increased his fluids as appropriate and woah buddy.

The intake outtake has been ridiculous. I can’t keep up, not with liners, not with anything. The nappies were leaking. Leaking doesn’t even seem like the appropriate word – it was like every half hour Kai was DRENCHED, requiring a bath and full outfit change, and washing whatever he was lying on. I can’t tell you how many times a day I was stripping the crib and washing the sheets. I got to be an expert in washing the car seat cover and I started putting incontinence pads down everywhere.

So we switched back to disposables. I hate myself for saying that, but we did. The all-in-ones weren’t cutting it and I didn’t want to spend a lot of money upfront of more reusables that may not suit. I’m sad I didn’t have the capacity to change the nappies every 15 minutes and the full outfit/bath/strip the crib/wash the car seat routine several times a day, but I just couldn’t.

Disposables, I don’t love them. Here’s the other thing, even now the disposables (and we’ve tried several different brands) don’t always hold up overnight. I’m considering going up a nappy size to help with the absorbency because wtf. Knowing that nappies are likely to be in our forever with Mikaere, it’s infuriating that my kid isn’t even 2 years old and with tube feeding we’re dealing with leaks all over the place. It’s even more heartbreaking that this isn’t a temporary measure – Mikaere is likely to be in nappies for his entire life – that’s A LOT of nappies in the landfill not breaking down. Le sigh. We’re currently using Naty’s. They’re apparently an eco disposable (though I’m aware this is because they are PRODUCED according to the most environmentally friendly production methods. This however has NOTHING to do with their landfill implications. Their website says parts of their nappies are biodegradable in appropriate conditions (if that’s not snake-y marketing speak then I don’t know what is). Truth is they still take forever (400+ years) to break down in a landfill.

It’s very blah. So – special needs tubie parents I want to hear your tips. What nappies are best? How are you managing with absorbency? How do I not add several nappies a day forever to the landfill while still not having to change and wash everything?

(Image throwback to baby Mikaere in our very first few days home…)