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On the hip X-ray

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Kids with low tone are susceptible to scoliosis (this is where there ends up being a sideways curve in your spine), hip subluxation (otherwise known as a partial dislocation) or hip dysplasia (where the socket doesn’t fully cover the joint) – it’s not awesome.  Apparently all three are painful (womp) and scoliosis can cause all sorts of eating problems (with your insides being stretched/squished by your spine).

There is a not a lot of prevention that can be done in kids with low tone… all the of the early intervention strategies are movement, exercise and positioning. But with kids that are like ours… what do we do? The NHS promotes positioning with things like sleep systems and regular (read: constant) repositioning throughout the day but really – that doesn’t prevent much. Exercise and strengthening the muscles that support the spine is whats needed, but that’s not helpful

Mikaere has low tone. He’s at risk of scoliosis and hip subluxation/dysplasia as a result. And you can see it, in the way he holds himself, how he struggles to stack his body the way that we do naturally – just how easy it would be for things just to misalign.

We spend all day everyday repositioning. It’s in how we hold him and how we move him and how we put him down, feed him and play with him. (There was a point in our first few days at hoe where I felt we were literally being taught how to be with our boy.  Every single moment with him is an physio/ot/development moment where we teach his body and reposition his body with an eye to prevention. Holding his wrists, repositioning his knees, encouraging him to turn his head one way over the other, it’s never ending).

Positioning is one of the many things we think about constantly. Because that’s what’s there is for scoliosis prevention – repositioning and supportive seating. That’s to say, it’s the only treatment until you get to full body torso braces and surgery.

So we reposition. We stuff supportive pillows and tubes and straps down the backs of chairs and his carseat and line them along side his cribs.  And every six months to a year he gets a spine/hip X-ray. So we go (if I’m clever I’ve paired the appointments with something else in the hospital). We X-ray. And we wait for results.

Our Physio knows it’s coming but we’re not ‘bad’ enough yet for a referral to orthotics.

This time there was no news. His hips don’t show any signs of sublaxation (hurrah) and his spine is still under the threshold for scoliosis treatment. Phew. We know that we’ll eventually be referred to orthotics, but we haven’t reached the ‘its bad enough for orthotics’ point yet. So we wait. We reposition. We put Mikaere in the stander. We hope.

So hey ho. Onwards we go.

On standing

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We’ve started a new exercise at our Monday Morning playgroup – standing. I don’t mean the standing that happens in the stander but proper standing, on his legs – not strapped in. It takes two people to support him and he’s always leaning against something (because head and core and legs is too much to think in one go) but you GUYS!

His feet are on the floor! His legs are straight (either with the help of us or gaiters) and he’s upright!! I’m glad this is a thing we’re working on. It feels like a step forwards. Its delightful to see how tall (!) Mikaere is, and it’s not hard to take that leap of imagination and think on what things could have been like if (there’s always that if and it’s a dangerous path to spend too much time on, but I let myself daydream for a moment or two).

I don’t know if we’ll ever get to unsupported standing, Mikaere needs a lot of encouragement (read: hands on his knees or leg gaiters and lots of cheering and big fusses) to straighten his legs. We currently have a floor baby – that’s his happy place, lying down on the floor. Where he can kick and wriggle and have some movement – the floor is where he does it. We always set up a safe space for him to wriggle, lugging about mats and baby blankets for him to lie on.

The idea that the world might be more accessible to an upright Mikaere, that standing is one of the (many) requirements of walking… standing is one of those gateway milestones for the hopes of a special needs Mama, obviously.

He’s not standing unsupported by any way, shape or form, but for a five minutes on a Monday morning Mikaere stands outside his standing frame. He’s standing, weight moving through his hips and legs and little wriggly feet. I’ll take it, absolutely.

On a hospice stay

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We’ve been working up to a hospice stay, overnight for ages. Technically Mikaere probably could stay overnight without us and be just fine. Probably. However my mama heart is NOT okay with him staying over alone at hospice. I’m just not. I have the fear, that fear of what if something happened and we weren’t there?! The guilt would be unbearable – the world of living with a terminal disorder is a bit shit. So I have the fear and we haven’t done an overnight at hospice since we left in March last year.

In kind of the same vein, I can also count on one hand the number of times I’ve been out with Sam without Mikaere. Date nights in are only so beneficial when you lived an adventurous always-out before-baby life. The mental refresh that comes with being out of the house is huge. Even more so when it’s without the mental strain of anticipating all the requirements that come with caring for a complex needs kid.

We’ve been seeing a therapist who is attached to our hospice (because the special needs life is hard, yo) and this is one of things we talk about frequently. For a hospice stay to be helpful we, as parents have to be relaxed and trust the people caring for our child. The idea of being relaxed while my baby is not safe with either me or Sam is a contradiction. So we worked on trusting the hospice. We go regularly for swims and visit their preschool program. We enjoy the hospice at home visits and like the nurses.

You guys, our hospice is GOOD.

And so, after months and months of talking about it and visits and reassurance we booked in a one night stay. Kai would stay downstairs with the nurses, Sam and I would be up in a parents flat upstairs. It would be on a weeknight, so things are less busy and Sam and I would go to out to dinner in the town nearby. There was a preschool group the morning off, so went out early for that which was excellent. Mikaere fell in love with the man who played the ukelele. He enjoyed a fab time running his hands and feet through raspberry jelly (seriously, messy sensory play is so fun), we had a swim and he fell asleep for his afternoon nap pretty content.

The overnight part of the trip had a wobbly start. The handover which was meant to be at 3 wasn’t until 4:30, which meant that essentially I was looking after Mikaere right up until after his 6pm feeds and meds (so zero respite, considering I’d done all the hard work) but after handover finally finished, I kissed my baby goodbye and left with Sam.

Dinner was lovely, spending time with Sam was without a doubt the highlight of the whole trip. I’d missed being just us. But I wasn’t super settled. I shook that off as nerves and figured that’s just how I was going to be the whole night, so leaned in.

When we returned Mikaere was fine, sleeping like a champ in the nurses station with the nurses. (He sleeps where people can see him, because silent seizures are a bitch)

Everything went down hill the next morning. I got up early, showered and dressed for breakfast (and to check in on my boy). He was sleeping, fine as you can be. The problem is when I started doing handover. Packing up all his gear (which was all over the place). I knew we’d need a blend done – we weren’t going to make it home before his feed and meds were due. But I’m not allowed to blend in the kitchen (parents aren’t allowed in the kitchen, no exceptions) and the there wasn’t enough room in the milk room. I was directed to the coffee station – a small tiny kitchen with a bench big enough for making coffee. I wish I’d had the foresight then to say fuck no, but I didn’t. I trusted the nurses and off I went, blender and food in hand.

Fuck me. Every second person that walked by wanted a coffee. Some were polite and waited. Most weren’t, most were reaching over the top of the blender or across Kai’s food as I was prepping. There must have been at least twenty people trying to get around me, one after the other. They were very British (Oh excuse me, Sorry, if I could just, hope you don’t mind) but this was my kids food and strangers reaching over me constantly getting the way made me furious and stressed. Just fucking wait for your damn coffee!! I was raging. I’m raging just thinking about it.

By the time the blend was done I was ready to scream, I was well upset. Fuck the hospice, if I can’t blend in the kitchen (because parents aren’t allowed in the kitchen – which is the stupidest policy, considering I would have been supervised by the chef, or fuck, if the CHEF could have blended his feed that would have been even better) and the place I’ve been directed to is the coffee corner – fuck off. Never again.

That’s not the worst of it, though. What happened next makes me want to never go back. When I went to go check out the meds, we found two boxes were MISSING. Considering we had to sign each box in and it was kept in a locked cupboard there were alarm bells. I wasn’t too worried, because what was lost was a supplement and one was a med we rarely use, but if it had been one of Mikaere’s main meds which are notoriously difficult to order and get in (they’re on special order from our hospital only. One is shipped in from the states for us especially) I would have been livid. What were they going to do for the next med round?

Then I found out the nurse on that morning hadn’t followed the care plan in terms of his breakfast. Wtf. She just decided it wasn’t for her and so didn’t feed Mikaere the food that had been set out by both me and his dietician. WTF doesn’t even cover it. It was CLEARLY in the care plan, and the care plan is not optional. It’s not fucking optional! I’m grateful it was just the food they decided to ignore, because there could have been disastrous results if they’d chosen not to monitor him overnight or given him the wrong meds (or not given him meds at all). Fuck me.

I was already stressed af and this was the breaking point. Done. There is no trust anymore. I’m done. No more overnights at hospice. We have night nurses, we have support during the day. We don’t need overnights at hospice. They’re not us, the building is not home, meds are being lost and careplans aren’t followed and strangers are reaching over as Kai’s food is being prepped. Too many things went wrong on a single overnight stay, too many things went wrong when I let strangers take care of Mikaere. This may be their jobs, but this is our child. Too many mistakes happened for me to be comfortable doing it again.

I’m not saying hospice respite is terrible. I think hospice is awesome for those special needs kids who don’t need constant monitoring, who don’t have immune vulnerabilities and who are able to sleep in their own beds the whole night unattended without their parents wondering if their baby will still be alive the next morning.That is who I think hospice respite serves best.

That is not us. So. No more hospice overnights. I don’t want to repeat that experience again. Despite the wonderfulness of spending time with Sam, it was not worth the risk.

Instead we’ll ask our night nurses to babysit for a few hours and go to dinner somewhere local, somewhere less than five minutes away. Not yet, I’m still reeling from the hospice respite, but one day soon. Maybe. We’ll see.

On the developmental quotient

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One of the things newly diagnosed NKH parents worry about is severity. There is a range: Severe is at one end. Severe means that neither mutation is producing any protein that can be used by the body. Any protein that is made is probably unstable and falls apart to be recycled. Severe is what we’re primed for – disabled, seizures, developmental delay, early death. No walking, no talking, not eating. Perhaps smiling – a developmental milestone usually hit in the first few weeks – that’s the total brain development we’re told to expect of a severe child.

At the other end, there’s attenuated – that’s a whole different kettle of fish. Some children you wouldn’t even know have NKH. They’re walking and talking and going to school and are picture perfect (I met a boy who had very mild NKH in March. I literally couldn’t stop staring. I wanted to hug him, but as a stranger to this teenage boy, I refrained). It steps down in degree’s from there. Walking and running (or sometimes non-mobile) and/or talking up a storm (or non-verbal) and/or eating (or bolus only). There are a lot of other issues, too. ADHD, severe behavioural tantrums, autistic like behaviours, hyperactivity movement disorders (dystonia, chorea, ataxia).

As I understand it, it’s a huge range split across three categories: Attenuated Poor. Attenuated Intermediate. Attenuated Mild. You can’t tell which category is which until the child is much older (around 2), and they’re showing signs of development. The rate at which they develop – thats what defines which category you’re lumped in.

What this means first and foremost is that at the time of diagnosis (typically a few weeks after birth) it’s impossible to tell severe or attenuated, unless your child has two of the handful of mutations which have previously been expressed to show how much protein they produce. Regardless of this almost every parent is told their child is severe. If a doctor see’s your child as sleepy and lethargic (even if it’s just a bad day, or post seizure) they’ll lean towards severe. Severe is where we’re primed to be, and severe is what we fear in that newly diagnosed haze. Severe is the safe worst case scenario.

Thing is, it isn’t until our babes start developing that the severity of NKH comes to light.

There’s a slide in a talk done by one the NKH researchers that spits it out:

Attenuated Mild: Developmental Quotient 50-80
Attenuated Intermediate: Developmental Quotient 20-50
Attenuated Poor: Developmental Quotient <20

The Developmental Quotient is a score – it’s the developmental age divided by the chronological age. As the parent of a developmentally delayed child – that’s a scary score. In my ignorance, I know Mikaere’s delayed, but I don’t know *how* delayed. Very seems nice ambiguous score. I know he’s not even close to his peers, and he’s been passed by babies a year and a half younger than him, but there’s nothing concrete to latch on to.

And that was fine until in Boston I spoke to researcher, showed him a few videos of Mikaere and after a pause, he said Mikaere was unlikely to be severe, he was showing milestones that perhaps put him in the attenuated poor category. This same researcher had seen Mikaere a year before and had said without a doubt he was severe at his current presentation.

Attenuated Poor. That shocked me. What would attenuated poor mean for us? Would it mean more time with Mikaere? What would our future look like? Will I (dare I even hope) need to be looking at support and facilities and special needs schools? (Will we make that it that long?) – what kind of support will we need? Will we make it to the world of special needs vans and hoists and support with a teenage Mikaere (Can you even IMAGINE?!) Attenuated Poor threw me off my severe, live in the short term kind of mentality. What would attenuated poor mean for us as a family?

How do we make quality of life decisions for our family with such uncertainty in our future? You can see the kind of emotional mess my brain went to with the words ‘attenuated poor’.

But I’m also kind of a logical person, so my first port of call was can we confirm that Mikaere is, or isn’t right now, on the attenuated poor scale? Which is where that Developmental Quotient came in. It would tell me. There is a standardised test and a score and NUMBERS. I never wanted to know how delayed Mikaere was before and now it was all I could do to not do the test myself.

In the studies that discuss NKH Severity, there are three scales of development that could be used: the Bayley Scales of Infant Development, Mullen Scales of Early Learning, or Wechsler Scale of Intelligence. The Bayley Scales is the typical standardised measurement in the UK, and our physio was trained in assessment. So off we went. She came and Mikaere was assessed.

It’s heartbreaking to look at the long list of milestones by age and know your baby can’t do the majority of them. What a knock. Still, I cheered for everything Mikaere could do. We marked off some milestones, which is positive (he’s on the scale, you know?) and just – we got through. I had to remind myself that MIkaere hadn’t changed. Mikaere was still his happy little self and he couldn’t do anymore or any less than he was yesterday. He’s still just fine on his own little path.

Deep breath in. Slow breath out.

We got through the assessment and I put it out of my mind until the assessment report came.

Cognitive: Age equivalent: 3 months.
Language Receptive: Age equivalent: 3 months 10 days.
Language Expressive: Age equivalent: 6 months.
Motor Fine: Age equivalent: 2 months
Motor Gross: Age equivalent: <16 days

Mikaere was 21 months when we did the assessment with an average development of about 3 months. Oh my heart.

DQ Final Score: 3/21= 0.14 or 14%

But there we go. The numbers are pretty clear. Mikaere’s solidly in the Attenuated Poor Category.

On more weight gain

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I just did the first weigh in a month. At our last paeds appointment she said not to worry about his weight, he’s tracking close enough to the 20% line and that’s okay. I basically decided that if his medical team weren’t worried about his weight, I shouldn’t be.

My fear is based on the dietician making harsh calls about the blended diet based on his weight gain, which to be honest, shouldn’t be. As his parent if there is no concern from his paed and CCN, then I definitely shouldn’t be letting the dietician freak me out with some half baked comments (and let’s be honest, she can inform us, but as parents we decide what he eats).

I feel like in the world of high-medicalised special needs there can sometimes be a power imbalance between professional and parent. The professional doesn’t always acknowledge us as experts in our children in our own right and often there is the expectation that medical professionals know best. I learnt early on that no one other than the metabolic consultant anything about NKH, and often doesn’t alter their typical plan to include it. No one knows more than I do about my son, and no one is looking at the whole picture but me.

There is the other times though, when the power shifts the other way. I know how to advocate and have no fear entering conflict to achieve what I think is the best outcome for my son. Mostly, I don’t need to Mama Bear anything. I’ve learnt that being brash and loud is not always the best way to get results and sometimes it is. And then sometimes you can ignore an email for three months and it’s no big deal.

So I stopped weighing Mikaere for a month, and what do you know? Despite all the vomits there’s a modest increase. Good job us!

 

On the improved head holding

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I remember way back in September 2017 I was sitting in a group of ladies (a mix of therapists and special needs mums) expressing my fear that Mikaere would never hold up his head. I’d been primed by our doctors not to expect him to head hold (smiling – one of those milestones a neurotypical kid hits at a few weeks was to be where his development stopped. That’s what we were primed for).

I held onto this fear for the longest time, right up until Kai, learning against Sams chest was able to hold his head upright without it falling to the side. And then, with support, he was able to control his head to look to the left and then back to the right, and then, AND THEN he tipped himself forward slightly and held up his own head (!!!!) – it meant his brain was making connections! His brain was learning how to balance his head and coordinate that with direction!!

At first it was only mere seconds that he was able to hold his head up without support. He was wobbly af, but those tiny two seconds, three seconds were everything. I posted way back when about those initial moments. Since then, with much work and support and physio (hours and hours and hours of it) Mikaere has come on in leaps and bounds.

With some convincing, he can hold his head up almost a whole minute and a half. This is game changing. It means when we pick him up, we don’t need to cradle his head like a newborn (which is convenient, because he’s no longer newborn size or weight, and picking him up requires two hands and the muscles to cradle 10kgs of baby).

It means, for a minute, I can hold him with one arm while I grab something. It means he can sit with us, and we don’t need to not worry about his head, It means when we’re doing physio, I have an extra hand to support his core or encourage using his arms. It means moving on from the newborn holds. Mostly it’s just been one of those skills that has come on that has changed the way we interact with him and we’re over the moon.

I wish I could have gone back to last year and told myself, with all the fear, to be calm. That Mikaere would hold up his head. It’s not neurotypical by any stretch, but my days it’s an awful lot more than we thought would happen.

To clarify, because I know without a doubt there will be some NKH parents reading this, who may feel that horrid sinking feeling because their babe doesn’t yet do the same (I am super familiar with that sinking feeling, for sure. It’s awful. That mix of happy and jealous but not jealous and sad with an unhealthy dose of grief… the special needs life is rubbish) – this head holding business – it’s not all the time, it’s not a reliable head hold and Mikaere is still very very wobbly. We’re not even close to the world of the neurotypical head hold.

Still, all clarifications aside, we’re pleased as punch with this little development. We see you little guy, we see you and love you and are so proud!

Please stop telling me how strong I am

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

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

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

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

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

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

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

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

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

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

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

On the helmet

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

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

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

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

How huge was that?

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

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

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

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

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

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

On the eye gouge

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

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

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

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

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

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

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

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

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

On grief

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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