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On The Genetics Confirmation

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So, we got the letter in the mail today. There’s no surprise, Sam does indeed carry the c.1108C>A p.(Gln370Lys) mutation and I carry the c.395C>T p.(Ser132Leu)  mutation. As expected. 

If I don’t think about it too hard, we’re okay. We knew this already and onwards we go. If I do stop to think about it, I go down a bit of a tunnel. 

I think about how if this had happened 50 years ago, both Kai and I would have died in childbirth (and survival of the fittest would have won out).  I think about how horrific it is, that instead of something innocuous and sweet like curls, or cheekbones, Kai inherited NKH. I think about how Kai had a 75% chance of being fine, and instead, he landed in that other 25%. 

It’s a dangerous path, because if I’m thinking about that, then I start thinking about the alternate life we might have lived. How curious he’d be right now, how mobile, like a little whirlwind of movement and mess making. How he’d be toddling about, holding our fingers and insisting on all the things. How social, he’d be. How he’d be able to mimic what we do and learn all the things.

It’s a bit of an effort to pull myself back, to shake off the grief of ‘what if’ and settle back into our reality. 

Here’s the other thing, though. If we chose to have more kids (and I think we both would like to, eventually) Sam and I have a real chance of having another NKH baby. The consequences of this don’t need to be imagined – it happens enough in the NKH community for us to see long down the different roads of possibility.

There’s the road where your baby is affected by NKH, and you terminate, or deliver early, or at full term and avoid any extreme measures. That’s a hard hard road, of grief and sadness and pain. There’s so much hope when you’re pregnant, and it’s robbed from you with NKH. The guilt, and grief of this whole situation is rough.

There’s the other road, where you raise two NKH babies. That’s an equally hard, hard road. Again, so much grief, and pain and suffering. Just as much sadness. So much difficulty, and hardship. The guilt, and grief of this option is equally rough. 

They’re both rubbish options to be fair. So you hold out hope that your baby is either a carrier or in the clear, but the difficult thing there is it’s a gamble. It’s 100% a gamble, with your life and your emotions. What a thing to gamble, hey?

No judgement from me on people who go down either track. There is so much grief associated with both, that I just, I just can’t. I can’t judge anyone, I want to wrap our entire NKH community up and in a bear hug and say no more. No more pain, or grief or suffering. We’ve already been through plenty thank you very much.

The other option is everything else. IVF with pre-implantation genetic diagnostics (which the NHS won’t pay for, btw. The cost of a typical round is £10,000. And generally, the advice given is by round THREE, 80% of parents will get a positive pregnancy test).  Donor eggs or sperm with IVF.  Adoption.  No more children. 

Some friends of ours are already thinking about their second babies. About growing their family, and they talk about it like an event that can be slotted into their calendars. When our first is maybe just past a year, we’ll try. It won’t take long, we don’t think. Our first didn’t!

Because of NKH, we could never be so light-hearted about the future of our family. So mostly I try not to think too hard about it. 

I’m not super successful, to be honest.  We’ll see. We’re lucky that our present is so filled with love (as soppy as it sounds) that it’s easy to stay in the present right now. 

On Kai’s First Birthday

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Today, Kai turns one.

This feels overwhelming, and I’m a bit teary.

 

I wish I’d known. I wish I’d known that we’d make it a year. I wish I’d known when we were in intensive care, and the neurologist was telling us Kai’s brain was shutting down and there was nothing they could do. I wish I’d known all those times I cried over his incubator. In those first few weeks where I was desperate to hold him, when we were willing him to breathe, when we watched them take pints and pints of blood, pumping back in a cocktail of ‘this might help’ drugs.

I wish I’d known to expect more than the fear. That someone could have sat us down and said sure, there will be fear and grief and hardship, but there will also be a lot of love, and hope and smiles. And that in the good moments (because there will be good moments) your heart will burst with all the love and joy. And it would happen frequently. That with every new skill, with every developmental increment there would be more celebration than you could imagine.

That the love for our little guy would stretch further than our family and friends. That people would run marathons, hold concerts and would walk extreme distances in his name. They would knit blankets and bees, and make cakes and organise pub quizzes and wine tastings for him. That people who have never even met him would love him.

I wish I known how kind people would be to us.  That so many kind words would be shared, so many generous gestures taken, an overwhelming number of kind acts done over and over again is humbling. I wish I’d known our village would rally around us, and would grow. That we’d be so supported. That Kai would be so loved.

I wish I’d known that desipte the hard times, we’d rally. That we wouldn’t take NKH lying down, and we would raise over £40,000 for research against it. That we would contribute towards a cure.

I wish I’d known how much the NKH community would come to mean to our little family. How many friends we’d make, how many wonderful people we’d meet from all over the world, how many other NKH kids we’d end up loving. I wish I’d know how we weren’t alone, and what that really meant.

I wish I could have told the me that was reeling from the diagnosis what, truly, this year was going to mean.

When I think back, I’m overwhelmed with it all.

But first and foremost when I think about Kai. I think about the hardship’s he’s had to endure the past year, the pain and the medical appointments and all the tests. And I think about how all of that is now, thankfully, not the bulk of our day to day.  I think about much he’s grown, and how much delight he shows. How he enjoys his day – his little verbal squawks and his determination to do exactly what he wants to. Just how unbelievably beautiful he is.

I feel lucky, so ridiculously lucky that we’ve had a whole year with Kai. That we made it.

(Also: A big giant Fuck You to all the doctors who ever told us we wouldn’t).

Happy Birthday little guy, we love you more than you’ll ever know.

The Garden Party

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We’re so lucky to have the kind of extended family we do. Kai’s Grandparents, Great Aunts + Uncles and Great Grandparents threw Kai a Garden Party fundraiser. It was AMAZING.

There were all sorts of stalls. Cake and pimms, Bric-a-brac, Cards, tombola. Sam’s Great Aunty Sal had made all sorts of Jams and Chutney (a few jars even made their way back to our pantry!). There was a raffle for the luxury hamper (very oh la!) and there was a whole table of knitware. Blankets, and toys and scarves. It was beautiful.

I myself made Wine Lanterns from empty wine bottles, and candles from the ends. It was quite fun, but candles in glass votives were not as easy as I thought they were (wet spots are the worst!). There were also cards, and #teammikaere bracelets, and Joseph’s Goal bands. It was lovely.

We had a fab turn out, so many people came by despite the rain. I love Toddington, there is such a community there. We’re really lucky to be part of it by extension. So many people came to talk to us, to hear about Kai and say hello.

It was an amazing, amazing weekend. We raised a ridiculous amount (over £2000!!!) for NKH Research. We’re so humbled to have so many people care about our little family, happy to partake.  It was such an amazing day, really it was.

I was exhausted at the end, and really struggled. I’m an introvert by nature, and it had been a long week of meeting people and not being at home (which I both enjoyed and struggled with, it’s such a delight to have family around who love on Kai so much, but introvert). Towards the end of the day I pretty much crashed and took myself off to bed early! Too much excitement, hey?

Still, again – thank you to everyone who came out. Thank you to everyone who came to manage the stalls (we love you!), to everyone who donated something (we love you!) and to everyone who came out on the day and bought something (we love you!)

 

On getting in the media + podcasts with The Baby Nation Show

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You guys are great – we’re really thankful for everyone that’s on Kai’s team. Who has stopped to speak to us, who has fundraised or donated or spent time thinking good will our way. We’re really lucky to have so many people on our team.

We’re pretty sure that most of you we know, or you’re friends with our friends or our families. That you have some connection with us and Kai, and we’re grateful. But we’re also aware that in terms of growing awareness, and gaining more funds for NKH Research is difficult when we’ve already saturated the people we know with the same message. We’re preaching to the choir, you know?

In the interest of taking our story a bit bigger, spreading awareness wider and outside the realm of family friends – we’ve been working with the media.  Or rather, trying really hard to work with the media. We’re not doing so well with that.

  • There was one horrific story about Charlie Gard in The Sun. They edited out all the bits about Kai and NKH.
  • There was a post-baby body confidence piece in Mother&Baby , buuuut nothing about NKH.
  • A tiny quote in Cosmo about dating lines, and one Sam used on me (way nothing to do with NKH, but hilarious)
  • A piece in the NZ Herald, written specifically about Kai and NKH, but the NZ Herald video team can’t handle timezones and baby schedules so the piece was cancelled.

I can’t figure it out. I have no idea how to work with the media. (Anyone got any tips?)

Are we just not newsworthy? Is this beautiful face not made for the news?

I mean, that hair, right?

Instead, we’ve tried to work with more people who get it, who are a bit like us. The Baby Nation Show found us on Instagram and asked if we’d like to feature on their podcast. That was pretty fun – in a past life Sam did an audio technician degree, so busted out his professional microphone gear.

  

Maybe it’s just that we’re a bit narcissistic and enjoy talking about ourselves, but I enjoyed it, and I know Sam did too. It was a light-hearted discussion about Kai, about our time in NICU, about finding out about our diagnosis and how we managed.

If you’re interested and want to hear us blather on about how much we adore Kai and what it was like in the early days with the perspective of now – you can listen here:

The Baby Nation Podcast: #7 The Mighty Mikaere

We’re pleased as punch to be featured. The weird thing is while we were talking it was quite light hearted and fun. We talk about Kai and his birth and time in NICU all the time. We do the spiel at every fundraiser.

Listening back to it when the podcast went live… woah buddy. I cried, hearing back about those first few weeks was tough.

Still, Ivan moved us on quickly enough so it wasn’t long before I was laughing at us again.  Possibly the most successful media-esque thing we’ve done to date!

Definitely check it out, if you’ve got a spare half hour to listen to us gush about Kai.
PS – at the end we were asked to mention people and we reacted with deer in headlights and missed a TON of people. So, if I had been clever enough to have a list, I would have added:

Liz and Mark, Chris, Phil, Pam and Robert, the Great Aunts and Uncles (Sue, Sal and Robin and family), the Chocolate Deli, Margot, Sandra, Colin, Jenny and Clare, Tony and Tess, Tony and Penny, the Toddington Methodist Community, the people in Toddington we love who aren’t in the Methodist Church Community, our Homestart ladies Mandy and Dinah, Kai’s Nurses Wai, Elaine and Mina, our Hospice Nurse Tracie and all the nurses and carers at Christophers, and C&W and St George’s. Dr Makki Hameed. The paediatric A&E emergency staff (especially Dr Lucas and our fav nurse Jane).

I still feel like we’re missing loads of people, for which I apologise. You guys – we love you. Thank you for being on #teamMikaere. We couldn’t have survived without you all! 

Kai 101: The medical team

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I’ve said it before – Kai’s disorder is complex. And the NHS is incredibly siloed, so we have a huge, huge medical team. Everyone has their little speciality, and everyone has their own plan and requires their own appointments.

Our main team consists of:

  • A metabolic consultant, at Great Ormond St Hospital
  • Two neurologists, at our local hospital
  • A palliative care consultant, at our local hospice

They are the people that order all the things for Kai. But, they’re supported by a much larger team:

  • Our GP
  • Our Community Care Nurse
  • Our Health Visitor
  • An NHS Physio and a private Physio
  • An occupational therapist
  • Speech and Language consultant
  • A general dietician, and a metabolic dietician
  • An orthopaedic consultant
  • An ophthalmology team (at a different hospital)
  • The Gastroenterology team
  • Two night nurses, and a day carer

That doesn’t include the people who help, thanks to charities we’ve been referred to, like:

  • A hospice nurse, and a hospice carer
  • A hospice keyworker
  • A portage play therapist
  • Two Homestart helpers
  • An Early Years support worker
  • A benefit and fundraising support worker via contact
  • A Rainbow Trust support worker

That’s a team of 28+ people. For Kai and all his funny little complex needs. It doesn’t include people in the A&E that we know and love, the people who work in our pharmacy and deliver the meds, or the receptionist at our gp’s office who coordinates so much so I don’t have to. Or the people who supply everything, like the giving sets or the oxygen tanks.  It doesn’t include the people we’ve said goodbye to, like our NICU team.

We see multiple people on the list every week – though typically I’ll try organise all the appointments between Tuesday – Thursday, giving us a few days to just… be us. To spend some time outside the world of medical everythings.

Here’s the thing though – I haven’t met anyone on our team who wasn’t taken with Kai. Who hasn’t loved him, and wanted to have a cuddle, and love on him.

We’re really lucky, in that respect. That our team know who they’re working for, that they’re warm and on Team Mikaere.

Hopefully, we’ll eventually be able to cut down on our services that we need as Kai grows and becomes more stable. But till then, we’re pretty happy with our team.

On The Walk

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Wow. The Walk. If you follow us on social media, you’ll know the week before last I walked 78 miles along the Thames Path. 78 MILES! That’s 125km. That’s three marathons in three days. That’s a crazy, crazy long way. I didn’t  realise how long a way it was.

I walked it with Paul – a work colleague who organised the walk as part of a charity week our work does every year. Then every day, other colleagues and friends and partners would join us, help keep their spirits up. We all wore the same T-shirt, and we carried charity boxes, asking people on the way through if they’d care to donate. We’d planned to walk about 25 miles a day, from Henley to Windsor, Windsor to Richmond, and Richmond all the way to Thames Barrier, out East London.

Well.

I did not train. There were no long walks in the lead-up. Mostly we were busy with Kai and sorting the crazy that is our day-to-day. So when it came time – I bought a pair of fancy walking trousers and half a dozen pairs of merino socks from Amazon and called it good.

Day One was probably the easiest day – I was up at 5:45am, and caught a train out to Reading. My body had no idea what was coming, everyone was in good spirits, the weather was phenomenal. Because we hit our goal of £5k (!!) in donations, I did the first half of the day in a ridiculous gecko outfit. Everyone else thought it was hilarious, and were all delighted – except that it was hot, and I probably wasn’t drinking as much water as I should have. But the first 15 miles passed easily enough, we stopped for lunch, still happy, had a few beers.

When it came time, we shouldered on our packs for the rest of the walk.  That’s when it got a bit harder. I had packed more than anyone else, and my pack was heavy – well over 10kgs. I ran out of water pretty quickly and my body was feeling it. By the time the team pulled into the pub and had stopped moving, I was dizzy, shaking and I’m embarrassed to say I vomited… Turns out eating a lot of protein snacks without drinking any water is a bad idea. When I called home from the hotel, I was having a tough time. I missed Elly and Kai. I was sore. My body hurt.

I’d covered 23 miles in a day. I had a cold bath for my feet/legs and a regular bath for the rest of my body, but man, was I still feeling it.

 

Day Two, my legs and feet felt good (thank goodness!) The baths and early night did their job. Everyone started out bright and early, feeling great and ready to go. The arrival of fresh faces and legs also kept our spirits up. One of our sponsors had given us a secret mission: getting photos outside the FM Global offices.  It wasn’t on the trail, so before we set off Lewis and I dashed out to get it done before the party moved off.  We managed it, but we were accosted by a rude security agent. Apparently not a fan of geckos! Secret mission completed – off we went!

It was a long way to lunch though, and the group didn’t stop until 14:30. That’s a long time to be walking, and we were feeling every mile – we must have covered at least 17 miles that morning! We were all hungry and ready for a sit-down. The pub we stopped at (The Red Lion) had a great outside area where boats could moor up. We sat outside, in the sun by the river.  At this point, a number of people had very severe blisters and sore feet. We all pulled our socks off to administer some much-needed feet care. I was pretty smug, no blisters as yet!

It was also decided that I was probably more dehydrated than I thought – the gecko costume was HOT. I couldn’t keep walking in it without hurting myself, so I made the decision to switch out.  While we were fundraising, there had been some talk about a bee costume, as the bee, thanks to its odd aerodynamic shape had become a symbol for NKH.  Except I’m a grown manly, man. Gecko’s seemed more appropriate than a bee. As a joke, I’d picked up a bee costume when I got the gecko outfit – but it was meant for a small girl and came complete with an antenna headband, and sparkly gold wings.

Well, needs must, and it was lighter than the gecko costume, so on it went! I just managed to squeeze into it! (Elly sent me a message after I sent her a photo, telling me I was the prettiest bee there ever was!)

The afternoon wasn’t so bad – we’d gotten better at talking to people about why we were walking and asking for donations. Watching Lewis board a tourists boat shaking the collection tins made us laugh.

Toward the end of Day Two, we were still walking as the sun was going down. I’d fallen to the back of the group, trying to do video shout-outs for the people who had sponsored these miles – I wanted to get them done before the sun went down completely. Making our way into Richmond in darkness, lighting up the paths with our phones inbuilt torches – not ideal. It was straight out of the Blair Witch Project! We were exhausted, sore and walking in the dark those last few miles was so demoralising. It’s hard to keep going when it’s pitch black, the group was spread out along the trail and I was at the back, no idea where I was going. Spirits were low. My phone said I’d clocked over 30 miles today. Whaaaaat. It was such a struggle.

Eventually, I made it to the final pub for the day, plodding in looking like I was going to fall over. It was a shock to see Elly and Kai in the pub – they’d come out to surprise me! I was exhausted, emotional and quite dehydrated. Elly fussed (apparently I was shivering and pale, she missed the bit where I had to put my head between my knees to the floor to stave off the dizziness that came with being stationary). I felt better after eating, even more so after being plied with water and lemonade. I passed on the beer, I didn’t think I could manage it. That’s how sad and sore I was!

What a tough day.  Over 30 miles were clocked on my phone pedometer – I couldn’t believe it. What stupidly long way to walk! Later, at the hotel, I managed another cold bath for my legs, and feet. I genuinely hoped they would not be so sore in the morning and I’d be able to continue. I know I wasn’t the only one – everyone was feeling the pain from such a long day.

 

 

The morning of Day Three wasn’t quite so cherry (the cold bath hadn’t worked quite as well as it had before – I still had stiff legs and sore feet). No blisters though, the fancy merino socks were working! After a good breakfast, some ibuprofen and lots of first aid on the feet (vaseline, baby powder, zinc oxide tape and sports strapping) we were ready to go. It helped that today was the last day, and I knew this time tomorrow I’d be at home with Elly and Kai. Only 27 miles to go.

Again, fresh faces and legs helped get the walk underway with high spirits and the group eventually made our way into the city. As we got closer in, Elly & Kai joined us at Hammersmith Bridge. I was very very glad to see them! I’d missed them, especially Kai. It made a difference to the group, having Kai join us. People in the group took turns pushing Kai’s buggy, and people collecting donations would point Kai out when talking about NKH and why we were walking.

Lunch was a too short affair – it was a nice day for a Sunday Lunch by the River. The pub plied us with drinks, and food and even made a donation (thanks, The Waterfront).  We were all at the point familiar with the half day foot care routine. Everyone was changing socks, massaging feet, trying to ease the blister pain. I was sad to say goodbye to Elly and Kai and continue on.

But, my Uncle Rob joined us at Battersea Park. The second half of the day really began to take its toll.  Everyone was feeling the distance.  Even worse was that a mile 67, we were challenged by a sponsor to do 67 jumping jacks (Thanks, Sean!).  It was a struggle, these last few miles. We were all in pain, and tired and really, just motivation became a real struggle. Some of our team even had to stop – I don’t blame them, it was such a tough walk.

As we hit further into the city, we had a fresh supply of new faces and legs join us – new people with their enthusiasm to keep on really kept us going. It really helped those of us who had walked miles and miles, keeping us on the track, putting one foot in front of the other. Getting into central London had its perks – there were lots of things to see, plenty of famous London landmarks (which thankfully made their way into the video shoutouts).

But the further we walked, past Southbank, St Pauls, the Globe, the Shard… the landmarks got few and far between, and the sun was setting. Walking in the dark is always the hardest – even worse was that we were now being blinded by car lights as we walked near the roads. Walking around Greenwich, there was an awful lot of construction going on. It had a very very different feel from the leafy path we’d left that morning.

We’d been walking hours and hours in the dark, and had just circumvented the O2 arena when Elly and Kai appeared! Elly had driven out to the Thames Barrier, but with us not being there had walked up the path to meet us. Good thing too, because those last two miles were killer. I’d long run out of water (Elly dived into a pub to refill my water bottle, she’s the best). Elly said later you could tell who had walked several days, and who had joined that day. I know my gait had changed, my whole body felt stiff, and my ankles were sore and swollen. I didn’t even want to contemplate the state of my feet.

That last mile felt never-ending. I was super focused, not really able to say much or interact – just concentrating on moving one foot in front of the other, getting to the end. When we finally, finally reached the end – I was relieved. Everyone cheered, and there were tears too. I was pretty emotional. I couldn’t believe we’d done it, no training – just straight walked 78 miles.  Possibly the stupidest thing I’d ever asked my body to do, but there you go.

 

It was worth it, for the money we raised for NKH Research, for Kai. We raised just under £9000 pounds. I couldn’t believe it, really. It made every step worth it.

If you’re interested in donating, the justgiving campaign is still open. Go on – tip us over the £9000 mark.

https://www.justgiving.com/fundraising/bazaarvoice-thames-walk

I want to say thank you to everyone. Thank you to Paul, for organising the walk and walking the whole way with me. Thank you to all the walkers who joined us, to Naomi, Marion, Lewis, Soph and Caroline for doing the hard yards. I know I’m not naming everyone (there are so many people I want to thank!) but to all the BVers, friends and family who walked with us – we really couldn’t have done it without you keeping our spirits up.

Thank you to everyone who donated, to everyone who sponsored a mile, everyone from BV Austin who donated, to the shout out at the Gong, thank you. To all the strangers on the trail who donated into the Collection Tins, or took a card to follow Kai’s story – you’re amazing. Thank you. To all the pubs who gave us a place to rest and put our feet up, to Elly for telling me to buy merino wool socks (and thus saving my feet from all the potential blisters!).

Thank you to everyone who followed the walk. I’m so humbled. Thank you.

I’m proud that I managed to finish the entire 78 miles but even more proud of the money we raised and the difference it will make to NKH research.

So yes, 78 miles. Done!

Donate and support Sam’s 78 miles Thames Path Walk (in costume!)

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If you’ve been following us on Social Media, you know that today – TODAY (!!!!!) Sam is starting the Thames Path Walk. He’s walking 78 miles across three days (a marathon a day) to raise awareness and funds for NKH Research.

We’re really lucky with this one – this isn’t one of our events, it was put on by Bazaarvoice – Sam’s Work. BV (already having a soft spot with us as Kai is one of three London BV babies) has been an incredible support for our little family this past year, I can’t even begin to share how many times Sam has had to work from hospice or hospital and it’s been no problem. How many BVers have come to our fundraising events (High five to wine and pasta, right?!) and how many send messages of support and love and how many have donated each time we’ve asked.

It’s been phenomenal.

On top of all of this, they put on the Thames Walk. When Sam told me about it I laughed – I loved the idea of him walking a crazy way to raise funds (usually it is me suggesting the crazy adventure, so it was nice that this time he was doing it). Not only did they make giant posters of Kai to convince others to join them on the walk (and many people ARE joining them) (also, I  wasn’t kidding about the massive posters – they’re A0. They’re GIANT.)

There are also walking/running events happening in other BV offices. BV Germany are walking the River Isar, in Munich and BV Amsterdam ran around Vondel Park earlier in the week:

Overwhelmed by everyone’s generosity doesn’t even cover it. To the people walking, running, contributing – thank you.  To everyone who is walking – we love you. To Chris for organising the Amsterdam run, to Inas for organising the Munich walk – thank you, genuinely.  To Paul, who organised the UK walk – we adore you. We’re so grateful.

To everyone who donated and/or sponsored a mile – WOAH BUDDY. We didn’t expect to get every mile sponsored, so THANK YOU. Thank you to everyone who sponsored more than one mile (sorry we could only give you one!), we’re so grateful. So so so grateful. Genuinely, from the very bottom of our little hearts.

You guys are the best. Absolutely THE BEST! Expect a 15sec instagram story video shout out. Follow us on instagram (@teammikaere) to see the videos with your shout outs come up over of the weekend.

Here’s the other thing – as the BV team have fundraised over £5k, Sam has to do the walk – the full 78 miles – in costume. We (read: I) have been delightfully picking out ridiculous costumes. Gandalf? A giant lobster bug? A giant inflatable whoopie cushion? You’ll need to watch Sam’s first video to see what was picked.

We’re still collecting donations – the team hasn’t quite met their £7.8k (!!!!!) goal yet, so if you’re able – please donate. Anything – a pound, five, ten, twenty. It all helps. It all goes to research – in our case, to the team under Prof. Nick Greene at UCL, looking at Gene Therapy for NKH – which for us would be game changing. It would mean

It would mean a future with Kai. And a quality future – less medication, less deterioration, less pain.

So please, if you can – dig deep.

On an even soppier note, we’re really excited for Sam. He’s done no training, and three days out doesn’t have enough socks or own a pair of trousers that aren’t jeans, but we have complete faith that he’ll cross that finish line, blisters or no.

The things you do for your family, hey? We’re proud of you, baby. See you on the other side!

On hearing good news

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It’s a habit I’ve fallen into. When we talk to our medical team, so much is framed with what Kai *can’t* do. He can’t hold up his head, he doesn’t have good tone, he can’t do this, that and the other thing. His brain is broken and seizures and blah. Keep him comfortable, wait for the inevitable – we’re to expect a deterioration, did I know? I’m so primed to hear bad news when we see someone that before we even go in I prepare myself – ready to go into battle for my little guy.

So when our Osteopath mentioned today that each visit, Kai has been making solid progress, and it wasn’t necessarily down to osteo. She said that Kai is more and more aware of his surroundings, and his environment. That he’s showing more interest in whats happening around him, and that it was a delight to see (it was a delight, really. Kai had spent the previous five minutes batting at her hand and gurgling at her).

I think part of it is the negative framing, but also – I don’t see the progress. I’m so close, with him all day every day. It’s like when someone says’s he’s grown – I’m glad he’s grown, but I wouldn’t notice it myself unless I’m looking back at photos. My mental image of Kai is all up to date, with exactly where he is now.

It’s nice to hear a positive statement about Kai’s development – it’s nice to hear something other than globally delayed and significantly impaired intellectual functioning.

Because really, that’s all I want to do. Gush about how beautiful and wonderful he is.

Isn’t he just the most wonderful?

On how we portray special needs

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There is a thing I do… I didn’t even realise I do it till another NKH Mum mentioned it. When I share photos of Kai, I only share the ones where he looks the most… normal. The most able. The least special needs.

Here is a photo I used in the last post:


We took something like thirty photos to get that one shot where Kai looks relatively not special needs. Here is a more accurate view of what Kai is like:


As beautiful as Kai is, he doesn’t hold his head up. He doesn’t make eye contact, and his gaze is funny. His movements are spastic (and I use that word intentionally, because his movements are. They’re unintentional and uncoordinated).

I have a disabled baby. He’s beautiful, and I adore him, but I worry that I’m not painting a realistic picture of what special needs for us looks like. 

And it’s hard, because internally I’m doing a funny balancing dance, and it’s got nothing to do with Kai in himself. It’s between the hope I feel, and what I want for his future, between the doctors whose jobs are remind us of the doom and gloom, the reality we see with Kai and the future we can see with other NKH kids. 

Balancing the hope with the grief, and trying to bridge the gap with acceptance…. it’s not a graceful dance, this dance I do. 

Thing is, the hope and the grief and all the ginormous emotions I’m feeling, Kai is still just Kai. He still does what Kai does, batting at his bells, vocalising his noises and vomiting all the things (Kai is currently poorly, poor babe).

And it’s hard sharing all the things. Bluntly, we share about Kai so openly because of his disability. We share for awareness, for other families who have NKH who are recently diagnosed, and we share so when we fundraise for a cure, people who know Kai might be more likely to donate. We share for reasons other than it’s best for Kai. 

We are careful what we share, lots of movements are private, and everything we post here is delayed to give us time to process. At the same time, it’s a delight to share. To have so many people love my son, to be happy to see him doing well and support us when he’s not. You guys are the most supportive, and most wonderful. So it’s not a hardship to share (we obviously love gushing about how great our little guy is).

But I worry about the picture we paint. I don’t know – people that know us, and have met Kai… was he as disabled as you expected? How accurate is what we share? 

I guess I’d like you to know it’s hard, this daily special needs grind. Parenting I think in general is hard. Sam and I made the decision just to get on with it, and we do, the best we can. But for every picture with the smiles and family walks in the park, there’s the vomit and panic at 2 in the morning with seizures, or were out of ng tubes or kai won’t wake. 

Special needs, hey? It’s a whole different ballgame. 

On still wishing we were in Italy, not Holland.

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I think the grief is a continuous thing. I delight in other peoples babies, I do. I love on my friends babies, and I cuddle and coo at them. I smile at small babies when we’re out and about. 

But it is still hard. It doesn’t happen all the time, but sometimes, out of nowhere I’ll see a small baby much younger than Kai doing something he can’t do. Like hold up his head. Or make eye contact and smile. Or put their fingers in their mouth. Or child zipping by on the back of a scooter, big grin and lots of noise. A toddler holding their parents hands as they stumble about.

Small, tiny little things. And it’ll be like a punch to the face. I’ll smile, and hold it. But my eyes will be teary, and I’ll look away.

And each time, I’m mentally scanning the differences between Kai and a nuero-typical baby. I imagine what it might have been like if he didn’t have seizures, or brain damage. What it would have been like if he was a carrier instead of affected. The things we’d be able to do, normal things like holidays and have babysitters who aren’t nurses and we’d be weaning with finger foods instead of worrying about aspirating. We’d be able to go baby sensory classes and swimming and on public transport and not worry about illnesses or seizures, or very very bad days. We’d be able to go on holiday. We’d be able to go home to New Zealand. 

It’s a trap I fall into, this imaging a different life for ourselves. And it’s hard to come back and realise we’ll never have that. There is nothing I can do to make that happen. I honestly thought I’d pushed through – so I’m surprised that this grief about Kai’s ability is cyclic. That it continuously comes around again and again. It’s debilitating, hey. 

So I look at this baby who is doing something Kai can’t and I try to breathe through it. And I tell myself that Kai is on a different path and is quite happy going at his own pace in his own direction.  I hate it though. And breathing through it doesn’t always cut it, and sometimes I’ll rage at NKH instead. Stupid different path. Stupid NKH.

It’s usually at this point in my head where I turn from ranting to pleading in my head. Please Nick Greene. Please work your magic and push forward for a clinical trial that will save my baby. Please fancy researchers. Make progress today so we can have a tomorrow with Kai. Please find a cure.

Because that’s where our hope is, as always. In the research. In a cure. 

We hope. And we love on Kai so hard, like there’s no tomorrow. I still smile at the babies, but as Kai gets older it’s harder than I anticipated.