On the hats

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! 

On when your bff finally meets your baby

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. 

On BarBe-Kai, a fundraiser

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. 

On entertaining a baby who doesn’t focus

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. 

On a becoming a rubbish conversationalist

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.

On Introducing Kai to his Great Grandad

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. 

On doing normal things - like feeding the ducks

Like I said before... being at the hospice makes it a bit easier to do the ‘normal’ things. One of the things we did was to walk down to the canal and feed the ducks. Usually, such a jaunt would require the organisation similar to a military operation. At Hospice, our nurse bundled up our emergency meds, we waited for a window between feeds and off we went, on a little jaunt down to the canal. 

It was a bit of a walk, down a dirt track, under a bridge, down a gravel road. It was fine for us. Kai is still small enough to fit into his pram (which is a behemoth three wheel pram with suspension and ‘sport’ mode) so we had no problem going off road. Kai slept through all the bumps like a champ. I was able to push with one hand while I took photos with my phone. 

The wheelchairs that accompanied us had no such luck, and I admire the strength and determination of the nurses that pushed them, and the stoicism with which their occupants endured the bumpy ride.

We did eventually make it to the canal, and from there we walked along until the bend, where we found two little ducks. We were all gifted our share of bread (and I’ve since learnt that you’re not meant to feed ducks bread, as it’s bad for their digestion, like too much candy) and some of us threw it to the ducks, and some threw it on the path, each to their own. 

It was nice to get out, and be in the sun and outside. I forget how important it is to get outside. It’s so easy at home just to stay in. Between the therapy/nurse visits and the feeds and meds and managing the flat - the day just goes so quickly. If we don’t have something to get us to go out, it’s hard to find the momentum to get going. 

Honestly, I'm grateful for hospice for the reminder.

On being back at hospice

So... we're back at hospice on a symptom stay. Kai deteriorated, and we got into zero awake time and frequent seizures. Because we had so much advice, I went with what I thought was best, which was to not tinker with his anti-epileptics and to increase the NKH meds. It's been a while, and I'm pretty sure his glycine is through the roof (spoiler: it totally was. Two weeks later once the bloods were back I was proven right - his glycine was at a whopping 600, when he's usually around 250 - 300). 

It's nice to be at hospice at times like these - we're taken care of. We're around people who aren't sleep deprived, who know Kai. Who are capable with all the things, with the seizures and the meds and the comforting. He's in a good hands, when we're at hospice.

It also means that we get a chance to do family fun things. Like hang out in the sensory room, go swimming or introduce Kai to the ball pit in soft play. It makes a difference hey.

Sure enough, after a few days Kai gradually became more active and alert, and the seizure count went down and we were able to go home again. High five us. 

I'm so grateful we have the support we do in hospice. Hospice is a kajillion times better than hospital. I don't know what we'd do without them.  

On the up and down

When people ask how Kai is, I typically respond 'up and down'. On an up, he has good awake times, and is chatty, moving his limbs with intention and determination. And the last little while has been an up. I'm very aware of just how up he is. He's delightful. We've had only a handful of seizures, and we're able to go about our day with some normality.

This week... this week we're sliding into a down. Both Sam and I can see it coming, with fewer and fewer awake periods. I brush it off as a growth spurt, or teething, or that his body is recovering from something and needs the extra rest... I'm hoping it, willing it to be one of those things.

Except then the seizures start up. Again. Horrible horrible seizures. And then Kai's awake time was lasting minutes. And then he stopping taking the bottle. We're in a down, and I'm devastated. It was only a few weeks ago that we shook off the last lot and managed a short period of stability.

And I do what I always do, which is badger our nurses and our metabolic consultant into reviewing the medication doses against his latest weight. I ask for bloods to be taken (although that's a whole other battle. It's turned out that the lab has stopped processing our blood samples because they come too frequently (every few weeks) for the lab to handle. So they just don't do them. Furious doesn't even cover it).

We talk to our palliative care consultant who argue for weaning off an anti-epileptic, and our neurologist argues for weaning off another. The parents Facebook group has all sorts of comfort and other advice for things we can try.

I'm torn at all the options and trying to understand where to even start. No one is looking at the whole, holistic picture except me, and I'm no medical professional. I feel like I'm trying to hold back a tidal wave with my palms. And as I see Kai sink lower and lower into the world of unconscious seizures I struggle. Everything slows down a bit and gets heavy. I recognise the signs... I stop making the bed and worry less about going out and about without make up on. I fight with Sam, and stop going out for walks, hunkering down while I try figure this out. I graph the number of seizures against his meds and his weight and his last (super outdated because the stupid lab is slow at processing bloods) glycine level.

I'm not sure how to manage myself, exactly.

I used to bury myself in research, and then it was fundraising and now... I look to distraction because I just... I don't know how to keep managing these downs. They keep coming. It's never ending.

I wonder constantly if this is the beginning of the end for Kai. Dreading the moment we have to give more and more rescue medication. Or whether we'll work out what it is, or whether we won't and he'll come around anyway. The fear. It never leaves.

And when people ask how Kai is I can't honestly bear to tell them how down we are. I don't want to see the pity, or the sadness everyone has reflected back at me. We keep on keeping on because there is nothing else to do, because we love Kai so much. It's just, that the ups are so fleeting, and the downs are so deep, and no one really knows what's going on inside Kai's little body. No one really knows how to help him.

When we were in the NICU, we would say Faith and Fortitude to ourselves, willing just to get through to the next day. Now I say it, and I'm willing us to get through the next crisis, the next week, the next month, the next year. After the uplifting hope of meeting Nick Greene and how the research is moving forward, I can't help but wonder if it'll be too late for Kai.

These down thoughts... they are very down. 

So, faith and Fortitude. Onwards. Hopefully this down won't be a long one. 

On meeting Prof. Nick Greene

After all the excitement of meeting Van Hove, it turns out that the researcher we support through Josephs Goal, Prof. Nick Greene's lab is right next to our children's specialist hospital. In fact, Prof. Nick was apparently chatting to our metabolic consultant, having met at Van Hoves research presentation. 

Prof. Nick reached out and suggested next time we were up that way that we meet to hear about how the research was doing, so the very next day we got some face to face time with Prof. Nick!!

How lucky are we, to be in the right place at the right time to be able to meet two of the three researchers working on NKH treatments?! 

Prof. Nick is lovely man, smart, relaxed, hopeful. It was much easier to talk to him than it was our metabolic consultant or even Van Hove. I suspect it's because he's not a consultant, he's not managing hospital protocol or our expectations. He was just a normal guy without all the patient/doctor barriers that come between you and your typical health professional.

It was refreshing. Considering how many medical professionals we have in our lives, and how many aren't able to speak freely, this interaction was refreshing.

Again, so much of his work is unpublished so I can't and won't share anything here, but oh my days the hope. If I took the wrong approach with Van Hove and all my questions, I was wide open with Dr Nick Greene. And just, there was so much information, so much going on, so much that was happening.

There are huge, giant strides happening in the world of NKH research. Huge, giant *leaps* forward. 

It gives me hope that soon, if all goes well, we may have a future with Kai. So, we fundraise. Because that's the biggest barrier at this point. Funding the research is by far the biggest barrier we have between my baby and a future. Sometimes, if I'm having a low day, I'll imagine what it might be like. To not worry that this moment might be our last with Kai. To be able to relax in with him.

So much hope, hey.

On so cheeky!

I turned away for just a moment, and when I turned back.... so cheeky!!

Kai regularly pulls out his NG tube. It's one of the trickier aspects to manage - we want him to explore his face. Being able to hold up his arms and cross the midline to reach his face - this is huge for us. Kai only does it right now when he's agitated, but that he *can* is a huge comfort to me. When he pulls out the tube I want to cheer him on (because it can't be comfortable, not even close) but I also cringe, because I know we'll need to put it back in again.

Poor baby. He'll probably forever need a tube. He's getting pretty good at taking his milk orally, sometimes taking up to half (!!) his feed. This is huge for us. there was a time when taking 10ml by mouth was a Big Deal. But even if we got to a full feed by mouth, we'd still need the tube for meds. Because eating is such a pleasure - an activity for which is there is so much socialising and joy (for some things. For kai - Chocolate icecream, yes. Avocado, no) we'd never want to build an oral aversion by forcing the sheer amount of medication by mouth. He'd stop eating for sure if we did that.

So, tube. We're waiting on a gastrostomy referral - it means we'll have the tube go directly through his abdomen into his stomach, rather than down his nose. But I'm torn - I'm so torn. Not because of the g-tube (which I've heard mostly wonderful things about) but the intervention decisions. We're constantly trying to figure out where the line is between quality of life, and prolonging Kai's life unnecessarily with the interventions we choose. It goes hand in hand with a terminal illness, and it's so much more difficult when we're in good times. When he's awake and chatty and smiling at you. How do you know if you're making the right choice?

Would the g-tube be worth it, the surgery and pain afterwards, if Kai isn't to be with us that long? What if he *is* with us much longer than we expect? (Please, please, oh my days please). Would having a tube through his belly be more comfortable than down his nose? Would it be better for Kai? When should we do it... now? When he's a bit older, if we get that far? Button? Mickey?

I don't know what the right call is. We don't know how to make the right decision... so we research. We talk to other NKH parents. We wait a bit longer for the referral. 

In the meantime, I enjoy the scant hour of those beautiful bare cheeks before we have to put another tube ng in. 

On a new kind of job

I talk a lot about grief, and grieving. I often feel like I'm being blindsided by something else I need to let go of.

Today I realised that as long as Kai is with us, it's unlikely I'll ever work again. Intellectually, I made the decision to close my company months ago. Today the emotion caught up and I struggle.

I was proud of what I did. I worked on apps that millions used. I worked behind the scenes on some big brands, making parts of the digital world better. Some of the work I did was average, I'll admit. Timelines and limited resources and developer constraints often get in the way of excellence and I did the best I could when faced with those challenges. But some of the work I did was fucking brilliant.

It occurs to me that my time at being fucking brilliant in my career is now over. I won't ever be able to demand the pretty penny I once did. I won't ever be creating like I was, mingling in the high flyer world of agencies and amazing designers and interesting developers. The digital world moves on so quickly, new trends, new research, new tech and best practices.

Now, when I throw up a simple website or make some pretty cards, that's it. I feel like I've fallen from design grace and have been left behind.

I love Kai, and will forever put his needs before mine, but leaving my job and putting to bed all the work I was doing is a bitter pill to swallow.

Part of it I think is letting go of the glory. Designing for big brands can be impressive. Being 'just' a special needs Mum has its own stigma and stereotype, and when I'm stuck in the mundane same same of our days... it's hard not to feel down about it.

I feel all the feels. I didn't expect to, but there we go.

Edit: Yes, I can still design things at home in my spare time if I wanted to. I have an option to do that and I'm trying. I'm working with two phenomenal developers but like I said, Kai comes first. Finding time to work in Kai's day is like trying to capture a sunbeam between your finger tips. No good design work ever happens in distracted 10 minute intervals.

On sunny days

The more I hang out with our NCT kids, the less dagger like their developmental progression feels. It's hard not to delight in this little group of 6 month olds. They're all smiles and chubby cheeks and what else can they fit in their mouths?

We went to Battersea the other day, and oh my days, it was nice to be outside. We'd spent the morning at the hospital at some routine appointments, and meeting the researchers and I was desperate for time with non-medical people.

Four of us made it, and one of the other mothers asked if I'd like a cuddle with her wee little one. Oh my days, as much as it's difficult to see kai not developing typically, this little sweet thing was such a delight! She was so strong, and determined and focused. She was so beautiful, and holding her was such a joy. I felt like I got a small glimpse into what it might have been (though I'm careful not to linger in the world of what ifs too long).

It was just an amazing afternoon. Fab company, the sun was out. Kai had pulled out his ng tube and because no feed was due I left it. Which means for the first time while we were out and about kai had bare cheeks. We walked the 40 minute meander home, and it was beautiful.

It's amazing how something as small as a sunny day, a park and wonderful company can completely change your day around.

On Meeting Joe, from Josephs Goal

We were lucky enough to meet Emma and Joe (the famous Joe!) from Joseph’s Goal, the charity we support. It was after rushing about meeting Van Hove. They were also in London to meet Van Hove, and listen in on the research update. We went to them, in the lobby of a hotel near Regents Park.

Oh my days, I find such comfort in the company of parents who get it. Who understand, who hold the same hopes and fears and dreams for our kids. Who understand the day to day complications and just how demanding it all is. To spend some time with people who don’t shy away, who aren’t awkward and who just get it.

Joe, oh my days, Joe is amazing. He’s so long and lean, with the bluest eyes you ever did see. Joe is quite disabled, as I think Kai is likely to be. Emma and I were talking about our fears and hopes and one of the things she mentioned was about how different all our NKH kids are, how their mutations express their abilities in different ways, and how difficult it is to imagine that life our for babies. Joe is disabled, but oh my days, he’s beautiful. He’s able to vocalise, and it’s clear when he’s struggling and when he’s enjoying himself. Sitting with his Dad Paul, he was so relaxed, and happy. It was obvious to see.

I don’t shy away from these kids. I think we’re lucky that we spent so much time in hospice and were exposed to see many less able children, from something like autism to children with tracheostomies to children much more disabled than lovely Joe. And I have to say, Joe is eight years old - and just, I’m scared to hope for that long with Kai. We were told weeks, and then months and Kai is still trucking along. Our next milestone is a year. We're six months in, and a year feels like too short a time. We sit between an awkward place of fear, being told that any ‘acute event’ could rob us of Kai, between trying to make the most of every single moment and trying to live our lives. It’s tense, constantly waiting, feeling like every moment is precious. I’m not really able to settle when I feel like every day we’re lucky to have Kai with us. 

To hope for years…. I’m scared to hope that we’ll get that long with Kai. Could we be that lucky? Eight amazing years, and Joe is still going like a trooper. 

We also talked about all sorts, what its like to run the charity, what the researchers are doing, the upcoming conference in August, how tricky it is to fundraise, how to trust other people with our children.  We also talked about having other children, and the fear of having another NKH child, the split between neuro typical children and our NKH kids, how to manage and teach through the oddities of strangers attitudes towards our kids. 

There’s just so much to navigate with a special needs kid, there’s so much happening with the NKH community and the researchers. 

Honestly, I wish we lived closer to everyone - meeting Emma, Paul and Joe, back when we met Kirsty, Jon and Alex, its so comforting to be in the company of people who get it. We spent a good few hours just chatting to Emma, Paul and Joe, and oh, I wish we could have spent longer. 

Hopefully we’ll see them again later in the year. It makes such a difference you know, to find your tribe. Such a good day.

On meeting Van Hove and the current research

I don't know where to start. Last week I got wind that Dr Van Hove - an NKH researcher who has spent the last ten years looking at NKH, who has seen a number for NKH children, whose work has laid the foundation so other NKH researchers aren't starting from scratch - was in London on a three day whirlwind visit.

I found out the day he landed, but with a frenzied amount of emailing Dr Van Hove graciously carved out half an hour of his time on his final day for us.

This felt momentous - I have spent the last six months on a crash course into the world of metabolic biochemistry and genetics. My knowledge is rough, but I have read an inordinate number of research papers by Van Hove.

On the day I was nervous. Excited. I wasn't quite sure what I was expecting, but I had a long list of questions and was hopeful about learning a bit more from someone who would know. Finally! Someone who had answers!

Van Hove is a very softly spoken, genuine,  and very very clever man. A man of science, I'd say. He looked Kai over, and was very polite and he listened to my questions.

Well, my long list was a complete sham. I'd gone in with the wrong approach. I was asking questions like 'would x help Kai's brain development' or 'would x help the seizures'. I was asking because I couldn't find anything myself. I was asking because I was hoping finally, someone would be able to tell me.

I was a bit of a fool. On my very first question Van Hove very gently, and very kindly reminded that there was very little evidence for how things work with NKH. The more we talked, the more clear it became - there are a lot of good hypothesis. But there is very little evidence, and there is very little evidence because there is very little research. There is very little research, because there is very little funding.

I, just, I can't even begin to explain how deflated I was. I had the time with the person who has spent over ten years looking at NKH, probably the closest to an expert as I could get, and still... I was relearning what I already knew. NKH is so rare, we don't have millions funnelling into research. Our experts eek it out on grants and what small amounts families can provide. There is no evidence, because there is not enough research.

I gave up my list at that point. Van Hove did have a lot of interesting things to say, lots of new to me things, about growth and formation. About the research he's doing, about chaperone therapy and his hopes for the future.

I won't go into detail, because his current research is currently unpublished, but I'm hopeful. It was such a privilege to spend time with him. I have hope in his research. I have hope that the foundation learning he is doing will propel other researchers forward towards a cure. I have hope that he will find the right compound, for the right protein, for the right mutation. I have hope in him, because without him Kai, Sam and I have a very bleak future ahead.

Again, we place our trust in the research. We fundraise. We hope. There's nothing else we can do.

On finding things on a hard day

When we’re having a hard day, sometimes it’s just a small thing that will shake us out of it. Last week we were having a hard day - Kai was grizzly and having seizures, and at 3pm I was still in my pjs, the flat was a bomb site and I couldn’t get my wits about me. 

So, I said fuck it. I kicked a part of the couch clear of debris and Kai and I relaxed down into a mini nest. And then I painted our toes a delightful shade of pink.

Sometimes it’s the small things that make you feel better.

On special needs friendships

I’m only just beginning to discover how lonely it is being a special needs Mum. And I know, I know you’re all here, and we’re not alone through this. So many of my Mama social groups have typical kids, and I love them. I think they are beautiful, and so clever and just, so amazing. But that doesn’t make it any easier to bear when I can see they’re developing skills Kai might not. That all their babies are holding their heads up by themselves, exploring the world with their mouths, physically able to grasp things, and bring them up to their face, to make eye contact and respond, to be able to bear weight through their legs… I adore these little babies, but every time time I see them there's a grieving process for Kai. Every time, a little unintentional dagger to the heart.

And it’s not that I compare our kids, because I can’t. Our beautiful little NKH baby is doing things his own way, at his own speed. It’s that I’m still grieving this whole situation. That we’ll never get the typical version, that there is a lot of pain and goodtimes and heartbreak ahead for us and Kai. I’m of two minds - do I plunge in and socialise as much with these typical babies as I can, effectively ripping the typical comparison band aid off and at the same time normalising disability for a few people, or do I quietly step back (my current strategy, having just been at hospice).

I had a look for Special Needs parents groups in my area. I found a lot for autism, and ADHD, and down syndrome. Able bodied special needs. There was nothing for severely disabled special needs. Or rather, nothing that a quick google/facebook search threw up. I’m so disheartened. Where are the parents who get tubes and feeding pumps and wheelchairs and drool? The parents of the nonverbal and non ambulatory? Where do they hang out?

I think we mostly hide. Our days are so chaotic, and most days I feel like I'm only just holding it together, so most days we hide. I figure the special needs families in our community are hiding too.

Edit:

<3 for all the comments and suggestions. Yes, there are services and we're pretty aware of whats around us. The problem with services is that they are at a fixed time once a week - if Kai's ill or we have other therapy on, we're out of luck. Example: We've had a standing appointment for our local Small Steps for the last few months, and each time our appointment comes up Kai isn't doing well or we've had more important appointments, so we've missed it.

Here is what I'd like: a relaxed group of local people who meet irregularly and informally outside of any services. Like the amazing-ness of our NCT social circle, but special needs. 

Help us fund a cure by listening to brass bands + eating pasta

We’ve been trying to find our feet with fundraising. It turns out that fundraising is HARD. We know can’t continue to ask you wonderful folk of #teamMikaere to keep donating. So many of you have donated already, and we’re so so grateful. So genuinely grateful I want to hug all of you.

But every time we talk to our researchers, we get a similar message: there’s no evidence, because there’s no research. There's no research because there’s no funding. It’s difficult to hear that, that between me and my son’s future is something as stupid as money. And as much as I’d like to be on Ellen, showing off Kai’s cute face, or coming up with the next act of viral craziness (the most marshmallows in your mouth challenge? The mannequin breaks into the running man challenge?) I really don’t think it’s going to happen. 

So. We’re trying events, things people can come to that they’d pay for anyway. Here is what we currently have:

 

The Fulham Brass Band Concert

When: Sunday 21st May, 3pm - 5pm (this weekend!)
Where: St Etheldreda with St Clement, Doneraile St SW6 6EL London
Tickets: £11 - http://www.wegottickets.com/event/396988

They’re doing a bake sale and a collection for Joesph’s Goal. We’re very very excited. 

It turns out two friends at our NCT group play in the The Fulham Brass Band, and they do charity concerts. This particular concert has James Fountain - the principal trumpet of the Royal Philharmonic Orchestra. They’ve spun an English composer theme, and the programme includes Queen, Andrew Lloyd-Webber, Gavin Higgins, The Beatles and Richard Rodney Bennett.

We’ll be there, if you’re in London - fancy joining us?

 

The Cooking School #teamMikaere Pasta Class

When: Friday 23 June, 7pm - 10pm
Where: 3 Enterprise Way, Wandsworth, SW18 1FZ
Tickets: £75 http://theavenuecookeryschool.com/shop/courses/teammikaere-charity-dinner-class/

We’ve managed to snag a class - dinner (Pear and Ricotta Ravioli with Beurre Noisette, Rocket Leaves and Shaved Parmesan), dessert (Lemon Posset with Rosemary Thins and Raspberry Coulis) and Bottomless wine (!!!!) included. 

The thing with the ticket price…. a large portion of it is donated to us. We’re so so lucky that the Avenue has agreed to help us out. Spots are limited to 24, and we’re excited! Please come. You know how much fun we are on wine.

We’re also looking at a wine tasting, a 5k, and reaching out to local businesses for christmas jumper days + schools for non-uniform days. We’re not quite sure how it’s going to go, but we’re hopeful. So so hopeful. 

 

If you can come to the concert, or join us for the pasta making class, that would be amazing. Please come. Please help raise the money for NKH research.

On Neurologists

Since Christmas Kai has had a new community neurologist. I'm not sure how I feel about neurologists. Most are fairly logical and we get the 'we can't treat the underlying disorder so let's just make Kai comfortable' line over and over.

Our new neurologist... he's a bit different. Typically you like your doctors, as someone of authority holding lots of trust over your health, to be straightforward and logical people. Our other neurologists with the doom and gloom line have been. Very logical. Very straight forward. Very doom and gloom.

Our new guy is much more stream of consciousness than linear and straightforward. His mind is clearly going a kajillion miles a minute and what comes out his mouth is a stream of this point and that point with this study and that ancetodotal story.

But. A huge bit giant but. He is the first neurologist to offer us help. To offer slightly out of the box treatments to help protect Kai's brain. He hasn't given any guarantee's, and as far as we can tell, there is no harm. But, he's given us something small to try.

I think you have to be a certain kind of person to be willing to go over and above the usual 'we only operate within the box of typical management options' to explore other options.

Our neuro guy? He is it.

We're willing to try it, assuming the harm is limited or can be mitigated, that there is some supporting evidence (even if it's minor) and we put measurements in place to determine its effectiveness.

So, on one hand, hope.

On the other, at the same appointment I was completely blindsided by another sign of Kai's disability.

We measured the circumference of Kai's head. As far as I can tell his head looks in proportion with the rest of him, I was sure it was growing like it should. And sure, it's growing.

But not in line with his age, weight or height. He's in the microcephaly range. His head isn't growing as much as it would be in a typical child, because his brain isn't growing as a typical child's brain is. My babies brain is not growing as it should be.

Another physical sign of my son's disability.

It's hearbreaking, hey. It knocked all the wind out of me, and while the appointment moved on I was struggling with all the emotions.

When we got back to hospice later that night, Kai was having a speight of seizures and as I held him outside in the hope that the cooler night air would help, I cried.

I love my little guy so much. I have so much hope, but every day I grieve for him. Every day I grieve for the uphill battle he fights in his little body.

And I struggle - trying to weigh up what's best for him, what treatment we should and should not do, what questions I should be asking. I have to turn away from the emotional to be able to go into an appointment and have those conversations, but you can't deny the emotional impact. It comes out and when I take the time to feel it it's overwhelming. I find it so difficult to align my logical treatment plan and emotional sides.

Fighting for Kai, it's an everyday, every moment thing. To be honest, some days when it's overwhelming I hide. I'll lose myself in a movie, or a game on my phone for a moment or two. It's hard to switch off. I feel like I don't know enough, that I'm not talking to the right people, that I'm not doing enough research, or not organising enough fundraising events, or just, all of the things.

I don't feel like I'm enough, and that's hard, because I have to be. For Kai, and his future, it's on me and Sam. We have to be enough.

On crisis periods

Kai's seizures have escalated. On Friday they amped up to around a seizure a minute. A *minute*. We thought we were managing. Kind of. We have nurses who were constantly on the end of the phone with us, and we ran through our emergency seizure protocol on loop.

By Saturday we fled to Sams  parents for the extra help and come Sunday Sam and I were sleeping in three hourly shifts to ensure not a single seizure was missed. They were never ending, with breath holding, weird apnea episodes where during or after a seizure Kai would stop breathing for a bit.

It wasn't feasible - not long term. Come Monday we were back home and Sam was meant to be working, and we were both so sleep deprived. Our symptom care nurse called it, we went into A&E to see if we could figure out the cause and then onto hospice for a symptom stay.

We had a new registrar in A&E (and again we went through the spiel, hyperglycinemia is not hyperglycemia, I promise he doesn't have a problem with blood sugar). We felt like old hands at this. I had the cheat sheet ready with all the contact info, the med schedule, and the big red writing that said cinemia, not cemia.

Truth, we don't know why his seizures kicked off so much. It could because he's teething. It could be because we recently tweaked his meds. He could be sick. Too hot. Overstimulated. Constipation. Or It could be NKH progression.

In the end, our Community Nurse snuck our Neurologist out of his office and down to see us in the A&E. I love our neurologist. He's a guy who loves his job. Who likes his patients, and genuinely cares about Kai. He takes the time to greet Kai, rather than just talk over him at us. He's a lovely man whose brain moves a kajillion miles a minute. We like him.

Essentially, he told us to go to hospice, and hang tight. We moved the medication thresholds back so we weren't sedating Kai quite as often, and we waited.

I've never been so grateful to get to hospice. Sam and I were so fatigued, so sleep deprived that Sam was asleep before we even finished check in. I fell asleep in Kai's room, not even making it up to the flat. I'm so grateful for having the hospice support. I'm so so grateful they were there for us. Grateful that there  are people who know us, know Kai that we can trust to take care of Kai. I don't know what we would have done without them.

Sam and I spent the next few days recovering. I had no idea how sleep deprived we were, how much we were surviving on fear and adrenaline. Even having one good nights sleep under our belts, it took a few more days before we lost that hungover, groggy feeling. Sleep deprivation is horrid.

Kai had some hard days. Lots of seizures. Mostly sedated, very little awake time. I hate those kinds of days with him, I really struggle. I can't settle, and my brain goes a kajillion miles an hour second guessing everything we've done, trying to figure out the correlation between seizures and everything else.

We had a conversation with our palliative care consultant. We talked about the meds, and how one of them, the one we upped, an anti-epileptic effects another one, one we hadn't upped, also an anti-epileptic. They are apparently processed by the same enzyme, and while the hospital neurologists assured us they shouldn't interact which each other, when we upped the second anti-epileptic the seizures reduce slightly.

Kai started having more awake time, and seemed a bit more with it. Enough, that after a week, we were able to come home. Thank goodness for that.

Even better, once we were home I argued for a reduction back to the original levels, and his seizures came down even more.

Kai is still having seizures. They're still part of our everyday, and we still often have to give rescue meds. But, we're away from every minute. We have clear gaps after rescue meds, giving his brain time to recover. We've worked out a routine which means both sam and I get some sleep (kind of. Kind of not really, but better than sleeping in shifts). We invested in an angel care monitoring thingamabob so if Kai has an apnea episode while sleeping in his crib, we will know about it. I'm investigating wearable monitors, but we will see.

So, we made it through another crisis period. Thank goodness for that.