Gaaaaaaaaaaaah. I’m so sleep deprived. I did the midnight meds, was woken every half hour till 4am when Kai’s o2 dipped before they gave oxygen and then awake at 6am for more meds. 

Not the best state to be blindsided about end of life care directives for Kai.

Which is to say I was asked, in my super sleep deprived state, without Sam, to reconsider our end of life plan to include, in this instance, invasive ventilation if Kai needs it. That right there opens a whole can of worms. We spent so many hours and tears and hand wringing to agree on our end of life care directive. We talked about quality of death and quality of life. For us, for Kai. And Sam and I together agreed no ventilation. No vent, no c-pap. 

If it’s stupid rhinovirus that is going to take Kai, and not NKH, do we still let him go? Or do we fight it with a vent, and hope it doesn’t do too much damage to Kai’s lungs ad bring it the end about later?  When is the best time to say gbye? To even consider it? I hate that it’s a thing. I hate that we have an end of care directive at all. I hate that I’m being asked to think about end of life with a run of the mill every day *cold*. 

It brings up a whole conversation about how much intervention is too much intervention. As an example: We could go home with an o2 monitor and oxygen. Kai will eventually need an o2 monitor and oxygen as his disorder deteriorates – NKH (or rather low tone) is not nice on lungs that have to work harder to compensate. But because this is not NKH related, we have to hang out at the hospital. On a ward where the bed could be used for someone else, and we could be more comfortable and more easily managed at home. O2… it’s just a little nasal cannula. He’s on it right now. Breathing a tiny tiny amount of air (0.5L – minuscule amounts!). And I wonder right now whether this is going a little bit too far with intervention – is it kinder to help? Or not help?

Is a little nasal cannula okay? With a small amount of oxygen? There are half a dozen steps from that to invasive ventilation, but where is the line? How do you know? I hate that we’re being asked this over a stupid cold.  Because that’s all it is – Kai has a regular little cold and it’s horrific that our medical team just casually mention changing our carefully, painfully, with much tears end of life care directive it like it’s no big deal. Had a quick call with palliative, Elly. What do you think about a quick round of horrifically invasive ventilation if Kai needs it?

I felt completely blindsided. In my severely sleep deprived state I burst into tears and said I couldn’t have that conversation without Sam. I hate crying in front of the team. It changes the way they see you. I go from being medical expert in Kai to hysterical mother and suddenly the tone changes and they’re all gently gently. Condescending, talking at me rather than to me. Making decisions for me, and for Kai. It’s horrific. 

How can they ever understand what it means to talk about the death of your child? To casually bring it up like it’s no big deal?

Sam and I spent hours and hours deliberating what end of life for Kai may look like for our little family. For quality of death, versus quality of life. I have cried countless tears, I have hugged Kai close when he’s well, and sobbed when he’s suffered. Every day I wonder if we’ve made the right choices. About the interventions we make daily. Every day I wonder whether we’re doing too much or too little. Whether the decisions we’ve made are the right ones for Kai. 

For our community nurse to question our end of life decisions for Kai with such a blasé attitude, and in front of a room full of strangers? Devastating. I can’t believe she could have been so unthinking, so unsympathetic. 

I hate being in hospital. I hate it.

Kai has Rhinovirus. Which is to say that Kai has a cold. Which I think would be completely fine in a Neuro typical child… in my little NKH baby it means a&e visits (two so far), an increase in nurse visits (three in the last two days) and a hospital stay. I have no idea where he caught it. We don’t have people over who have even the remotest sniffle. We avoid public transport, we’re rarely out in public. 

But our doctor said it could have been anything. Rhinovirus is an airborne virus. Someone in our building could have coughed down our hallway, or passing someone as we crossed the road. Any innocuous little thing.

But for Kai, it means we’re back in hospital. I have not missed the hospital. Not even a little bit. Being away from Sam, the dingy rooms, attempting sleep on a horrid cross between a chair and a bench. Politely fighting with the nurses and doctors… I don’t have The Fear while we’re here. Kai isn’t having any seizures (thank goodness) and to be fair, apart from the occasional dip in his o2 stats and the added effort he’s working to breathe, he’s just got a cold. 

However, the on duty GP, the peds reg, and a whole swath of nurses think ‘it would be best’ if we were in hospital ‘just in case’.  Preventative just in case-ness because of all the maybes is huge. We’re in hospital, because maybe the Rhinovirus might get worse. Because maybe breathing this hard will tire Kai out too much. Kai is now on antibiotics because maybe, he might get a secondary chest infection (same as the last two non-existent chest infections Kai didn’t get. Possibly because of the antibiotics. Possibly because he never would have, who knows?). We’re in hospital because all the medical staff have The Fear. 

This bothers me, because Kai’s quality of care is a kajillion times better at home, where all the maybes exist just the same and we’re a short blue light ambulance away if we need to be. I hate being here. I am sleep deprived, having to do all the meds without Sam around for respite, not sleeping because of the stats alarm freaking out when Kai kicks and the nurses who want to do obvs while Kai’s asleep (waking us both) on the hour every hour. 

I hate being in hospital. It’s rubbish.

I wasn’t prepared to see how being parents to a special needs baby would change my relationship with Sam, not in the most fundamental way it has.  I know that parenting a special needs baby is difficult. I know it adds stressors. And you know what? I’m actually pretty lucky – Sam helps with Kai. Sam manages his stress and fears and grief and helps – he’s the bread winner, he helps parent with Kai on the off hours, he’s the king of bath time. And despite the gender wars of the division of labour, I do feel extremely lucky to be with a guy who helps as much as Sam does. I know that not all special needs Dads respond like he does.

In saying that, I was completely unprepared for how little us time we’d get. When there’s a spare set of hands to mind Kai we take advantage of the time to get everything we need done. Life admin, whatever on our phones, computers, with our brains far away from the moment. All the things we still want to hold on to, but don’t have time for. Now that our lives are not our own, my spare time is competing with Sam’s spare time, which also competes with ‘us’ time. 

We started co-existing, which just blows my mind. We were the tightest, strongest of couples. Now, under the stress of living with special needs and everything that goes with that, we’re a little further apart than I expected. Still strong, still tight and I still have all the feels, and when it counts Sam’s absolutely there. But I was unprepared for how the ongoing strain would change things for us. How easily we started sniping at each other, how the need to get things done with way less time pushed out all the usual relationship-y things we used to do.

We’re rearranging so we can make time for us (namely, we hopefully soon will have a nurse come by one evening a week so we can have a few hours together). The biggest help has been therapy, I think. We have a therapist come out to see us every two weeks, so we can talk through how we’re managing. It has the added bonus of ensuring we’re dealing with all the things instead of quietly leaving them till we’re at wits end. We didn’t intend for it to become a relationship tool (when your baby is on palliative care and you’re talking end of life plans your relationship pretty quickly becomes a non issue) but the more we’ve talked about how we’re managing all the special needs craziness, the more it’s exposed the tiny stressors in our relationship. 

I’m grateful we have the place, and time and help to manage the tiny cracks, to stop them from becoming ginormous craters. I’m lucky that Sam is even open to therapy, as I know so many wouldn’t be. I’m grateful that we’re managing. Therapy feels more like general life maintenance, than as if we were on the cliff edge.

It’s funny the things that help. I also don’t think therapy deserves the stigma it has, but hey ho. I’m glad we’ve got access to a therapist, and I’m glad we’re managing all the things.

It makes a difference, you know?

We’re currently back in a good time. We’ve had a few seizure free days, and Kai has been very vocal, very awake and aware and quite content. Apart from the teeth that are coming through – we’re in a good time. I’m just going to take a moment and say woah buddy. The number of good periods we’ve had can be counted on one hand. So to be in one, it blows my mind a little. 

However, the flipside with good times is that we haven’t had many of them, and I’m suspicious. See, I can manage the bad times. I know how to pull up my big girl pants  and do whatever it is that we need to get Kai sorted. I’m good at the doing. I’m comfortable with managing the resources and talking to our medical team and organising our massive calendar of therapists. 

This quietly waiting for the next dip, the next drama, the next thing… it’s tense. It makes it difficult to enjoy the good times, because I’m constantly watching out for something… anything. For a stretch that rolls into a seizure. For less awake time than usual. For pain grizzles instead of regular just because grizzles. I’m watching, and waiting, and I don’t trust for a moment that this good moment will be everlasting. NKH isn’t that kind to us. 

In saying that, we’re really grateful for this little patch of stable and happy. Things seem more manageable and everyone is sleeping and suddenly all of the basics of life (showering! socialising! shopping! Visiting a cafe for a coffee! Taking long walks!) seem possible, even achievable. We don’t often get stable and happy, so I’m trying my best to soak it up and enjoy it.

Fingers crossed it lasts.

Baby gear these days is ridiculously adorable and fairly affordable. That’s such a dangerous combination –  it’s difficult to resist ‘just popping in for a look’ as you go by H&M kids, or the baby section of M&S. Kai’s Grandma happened by some very very adorable hats, and before we knew it, Kai had the first of his hat collection.

Considering this amazing weather London’s been having, it’s a pretty well timed gift. We’re well pleased! 

My BFF lives in New Zealand. New Zealand is horrifically far away, a good 26 hours across two flights far away. I HATE how far away it is, when so many of my nearest and dearest live there (honestly, when is teleportation happening?!). Because we both have young ones, travelling so far seemed impossible. Except that Liz was sent on a work trip to Tel Aviv and Munich, which is practically next door compared to how far away New Zealand is.

And she very graciously stole a weekend to fly across to London to meet us. 

Oh my days. OH MY DAYS! I had no idea how much I’d missed her. How beautiful having someone who has known you forever, who is so wonderfully on the same wave length as you, who was so wonderfully in the SAME PLACE is. It was amazing. It was beyond amazing. Just small things, like doing the 6am feed, and Liz (being awake with jet lag) coming in to hang with us, while she skyped her little family back in NZ (honestly, I’m in love with her wee one, he’s beautiful). I’ve missed her. I miss her husband (hi Rob!) and I’m sad I haven’t had the opportunity to love on her little guy yet.

But having her here was THE BEST. Watching her love on Kai, singing Maori songs with us (because she knows the words. SHE KNOWS THE WORDS – because she’s Maori too! Sam tries, but he’s very English and not at all Maori), playing peek a boo with Kai and just – being around. Having your best friend around… it was so good. It was the best. 

I was so stoked she came to meet us, and absolutely gutted when she had to leave again.

One day, hopefully New Zealand won’t feel so far away. 

We’re so lucky to have so many wonderful people in our corner. Penny + Tony, friends of Kai’s grandparents, parents of Sam’s school friend threw Kai a BBQ.

I can’t even begin to explain what an amazing night it was for us. There’s something about having so many people love on your baby, to say they hope for the best, and to follow up with donations is just… it’s just overwhelming. And generous. And amazing. 

There was a very loud raffle, where almost everyone bought something to go in. It was fab – they sold something close to 500 raffle tickets. Our crew must have bought a bucketload because we came home with an epic amount of prizes. Some of the prizes were so impressive – a chocolate pizza from the Chocolate Deli was just phenomenal. There was fancy wine, a giant tube of haribo, bunting (from Peanut & Jam!). Kai’s grandad was especially happy with his new set of screwdrivers. 

There was a cake auction, with two beautiful, beautiful cakes (thank you Jan!) and Penny, our host, made this ginormous beast of a chocolate cake. Guesses taken for the closest weight (it came in at a whopping 5kg) and it was *delicious*. 

Kai’s Grandma sold some of her watercolours, I sold some of my cards. There was also a donation tin, as people came in.

And then there was the meat… Tony is an avid barbecue-r. Avid. The pork joint was bigger than Kai (at a massive 12kg) when it hit the BBQ. There was sausages, chicken, beef, pork and just… a lot of deliciousness in an evening. 

When Kai had had enough, we called it and packed up ready to leave. We got a text later that evening once the donations had been counted up and oh my days. OH MY DAYS. We made £1127.35 in one evening.

I… just, I can’t even begin to express how taken aback we were, how grateful we were by the generosity of people that didn’t even know us. Who didn’t know our story. Who were there because they knew Penny and Tony. 

And to the people that did know us, we’re so so lucky to be surrounded by the people we are. So lucky that there are so many on #teammikaere. So incredibly lucky. 

What an incredibly, amazing night. We’re so grateful.  Take that NKH. Research is happening, we’re moving it forward. After a night like this one, it’s impossible not to have hope. Hope that we’re going to fund a cure, that we’ll get a future with Kai. 

Because Kai doesn’t focus on objects (oh hey cortical vision blindness) a lot of the age appropriate toys available are inappropriate for Kai.

The best ones, we’ve discovered are ones that aren’t really toys at all. Ones that make sound – like the crinkly space blanket. They’re typically used by marathon runners at the end of a marathon, or by emergency services for people in shock. Its like a giant piece of tin foil that doesn’t tear. It’s well good, and Kai loves it. It crinkles when he touches it – fine motor movement is not his forte so it’s usually a big sweeping arm movement, or a vigorous kick. Bonus is that a massive sheet of the stuff is available on amazon for a whopping £1.45. 

The other is a carousel of hanging bells, good for swiping with a nice big arm movement, making a satisfying crashing of bells. We’ve even noticed that when’s Kai’s had enough, he’ll reach out and wait for a bell to settle in his palm before closing his fingers around it. Intentional grasping hey, our little guy is coming on in leaps and bounds!! 

It really is the little things for us right now. Kai hasn’t hit a lot of the regular milestones (head holding at 8 months still isn’t a thing), so when we find something that brings Kai such obvious joy, or he picks up a skill we hadn’t noticed before, it’s huge for us. I spoke before about how our little guy goes at his own path, on his own little NKH path, and I think this is another example of that. 

Still, at this point, we’re just grateful we still have a path to be on. 

It took six months for me to leave Kai with sam and go out with friends by myself. It was fun getting dressed up and I’d missed that feeling of anticipation. However, the actual leaving part was rubbish. I very almost called to cancel and could have happily spent this evening snuggling with Kai.

I didn’t though. I kissed him and sam goodbye a million times and walked out the door by myself. It was odd, to leave him behind.

Once out I did enjoy myself – I was delighted to catch up with my friend, and we did dinner and a show and cocktails (high five for the honeysuckle fizz. Nothing like a little bit of tequila to relax you. We made the opening night of Dirty Bones in soho, it was well good).

Here’s the thing though, I found it difficult not to constantly talk about Kai. He’s has my complete and utter focus, he’s the centre of my world right now. I’ve become one of those people who talk about their child all the time. I didn’t understand it before, but now I get it. It’s because I don’t have a life outside my baby really. I’m not adventuring, I don’t work in an office… everything I do is connected to Kai: how he is, the research I’ve read, the fundraising I’m trying to figure out… I can talk about Sam or Kai. My world has condensed, its shrunk to my two beautiful boys.

It makes me a rubbish conversationalist for people that don’t love those two as much as I do.

I suspect that the more I go out, the more I do outside Kai the more varied my conversation will become. I’m not sure I want that though. I’m still stuck in the ‘everyday is precious’ mentality. We don’t know how long we have, and I don’t want to regret not being with him. We’ve been trying to not live the diagnosis, and live through it instead… but you know what? While that’s awesome for enabling us to go out with Kai, it’s difficult to strike an emotional balance.

I’m still a new Mum. I feel guilty when I’m not there with him.

I guess we’ll figure it out. Till then, I’m hoping people will have patience with my deteriorating conversational skills.

As Kai was being a bit more Kai like, we took Him on a road trip out to meet his Great Grandfather. Oh my days, what an absolute delight. I adore his Great-Grandad.  He’s so clever, and he has on multiple occasions rather fruitlessly attempted to teach me to play piano (there a small baby grand in his living room. It’s fab. I love the idea of having such a beautiful instrument so wonderfully accessible, instead of tucked away!)

To see him love on Kai was beautiful. Kai’s lucky to have two Great-Grandparents to love on him, and it’s so delightful to see four generations together

Anyway, I’m all over the place with my feelings. It was the longest we’d ever driven with Kai, a good few hours. It was an amazing weekend of piano playing and cuddles and furious website building (I built a site for NKH fundraising while there were extra arms to mind Kai).

Kai’s Great Aunt was also there, and his second cousins. It was one lovely family trip. There’s something wonderful about having multiple generations all together. I’m so pleased that Kai has such a fantastic bunch of people around him, really.

Such a great weekend. Fingers crossed for more weekends like this one.