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I don’t know how to accept the unacceptable

By | #teammikaere | No Comments

I’m struggling you guys. There is a part of me that feels like I’m a broken record. Everything I’m about to say you’ve heard me before. But I can’t,  I just CAN’T wrap my head around our situation. Usually, if you’re unhappy with a facet your life you can change it. It’s not always an easy change but change is possible.

I can’t change that my son is disabled. The cognitive dissonance of trying to accept that this is our truth, that this is our life and the depths to which I wish it was not is shaking my core value system.  The cognitive dissonance is debilitating.

I struggle with the anger. When I can’t for another second listen to him scream because he’s hurting. I struggle SO MUCH with watching him suffer (I might appear calm and in control in the moment, but I promise you, under the veneer I am a sea of violent emotion). How are we meant to be okay with the pain and the seizures and the vomits?! Holding his little pudgy arms while I apologise over and over as another needle is stuck in his arm. The apologising I do as I force him through another round of physio or therapy. One more time, one more movement, one more I’m sorry as I push him through something he doesn’t want to do. More apologising as I force the button back through his stoma because the button has come out. More ‘I’m so sorry’ as I run my fingers over the cannula scars on the backs of his hands, the tiny tiny scars on his heels from the millions of heel pricks.  The millions of ‘sorry’s  because he’s uncomfortable and screaming and I can’t tell what is wrong.

My baby suffers. Not all the time. But even when he’s not suffering, when he’s smiling, he’s still disabled. He still doesn’t have the same opportunities in life that everyone else has. And that’s shit.

I’m not asking why us. I know why us. I carry gene for NKH, in the same way I carry a gene for brown eyes and wavy brown hair and skin that tans deep when exposed to sun. Sam carries an NKH gene, and a gene for his long legs and his grin and his blue eyes.

Its matter of fact. It is what it is. And it is SHIT.

But accepting that nature and science have made my son so severely disabled, and as a result this is our life is soul crushing. I love him an unfathomable amount and I can not fix this for him. I can not heal him.

And so I struggle. I’m questioning my life values, and struggling with myself because there are no answers (all the whole smiling and saying ‘I’m fine thanks, how are you?’ in social situations because this is too big for small talk, even if you’re living the special needs life).

This is one of the reasons why I took that posting break. Because it’s all very lovely to have you guys love on my baby, and the support you give us is valuable beyond all price, but when your core value system is breaking, when you’re so far away from your family and your dearest friends (WHY is New Zealand so far away and so expensive to travel between?! Sometimes you just want your Mum, but my Mum is on the literal other side of the world) it’s all kinds of shit.

I’m struggling you guys. There is no clear path. There is no emotional way forward, and I don’t know how to carry this. My son is disabled and I wish to the very depths of my soul that he was not. I don’t know how to align those two emotional opposites.

On goodbye formula!

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One of the things that happened in the past year was we got Mikaere off formula and onto the blended diet. It wasn’t an easy decision and there were a few heated discussions with our dietician, but the long and short of it is that nutritionally complete formula had ingredients high in glycine in it. I’m not feeding my kid the very thing he can’t process. There is one formula that is glycine free, but it has other side effects that make it not worth trying.

And so, off we went, easing ourselves into the blended diet. I kept extensive spreadsheets for working out calorie intake and micronutrients. I was bit overwhelmed but I started small. One meal a day, at first. Meat, vege, a carb/grain along with some fats (lots of fats, avocado, coconut oil, peanut butter). After a while I added in prunes (as a natural laxative, so we could stop using the horrid movicol) and then I started throwing in some Brazil nuts, as selenium helps is an immune booster.

We moved to two meals a day. He was vomiting less, and seemed more aware. He was tolerating it like a champ!

After a few months I added a breakfast – weetabix, with fruit and honey, with coconut milk. The fruit changes morning to morning, depending on what’s in the fridge. When that became part of the routine it was just the night feed. Porridge, mostly. More fruit, more honey, more peanut butter.

Then I got a bit brazen, and sometimes I’ll change it up and Mikaere will eat what we eat, but blended.

Sometimes if I felt like he could use the extra calories I’ll add in a put of coconut/chocolate pudding (a whopping 100kcal per 45g!) to his feed (it goes through the tube which is why it’s okay to mix meat with chocolate like some kind of magic chilli mix. He never has to taste it). Or if we’re out, an nice dollop of olive oil.

The great thing about this is he started eating oral tasters. We’d still put the blend on through the tube, but he’ll have a savoury/sweet course. Blended, to a nice easily manageable purée. Bangers and mash. Chicken and lentil dhal. Caribbean jerk chicken.

Dessert is usually chocolate pudding or a fruit/yoghurt purée (guess which one he prefers?!)

Overall he’s put on weight, and is managing MUCH better on the blended diet than he could on formula.

So, blended diet wins for us. I don’t fully understand why the blended diet isn’t more wildly supportive, or why we had to fight with our dietician. (I think it’s because nutricia, who provide the button refuse to state their equipment is safe with the blended diet, but it’s because they also provide all the milk formulas, so encouraging business away from their products would be bad for business. If a manufacturer can’t recommend a particular practice, then I guess the NHS can’t? Even though it’s most cost effective for the NHS, often better for the children and with less processing and packaging, better for the environment?)

The other stupid thing is that if it didn’t work with the mickey button (the button between the tube and Mikaere’s stomach that works a bit like a tiny pipe into his belly) and it got blocked, all that would happen is that I’d deflate the balloon, pull the button out, clear the blockage and put it back in again.

Anyway, I fought the fight and I realised that essentially as long as I’m not causing any harm it’s really up to me to decide what’s best (that comes with the caveat that I do my due diligence, discuss with our medical team and research the crap out of whatever it is I’m thinking of doing – I can decide whats best based on an informed opinion. I’m not a maverick, hey). And after all my research on the blended diet and formula, its perhaps no surprise we’ve switched to the blended diet. 
This by far is one of the best decisions we ever made for our boy. Hurrah Blended Diets!

On the emotional gap

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I feel like there’s a gap. Between when things happen and when I feel them. When I think back to when Mikaere was born and we were faced with one giant crisis after the next, each one worse and scarier, each one forcing us to examine our thoughts on life and death and what we value and what we love… there is a thing that happened. You just face the next thing, you put all your feelings to the side, and you just get on with it. There is no time to process, no time to recover, no time to feel.

My baby is having seizures. My baby has been admitted to hospital. My baby’s seizures won’t stop. My baby is in intensive care and in a coma and there is nothing they can do and we’re having an emergency baptism and we’re being moved to hospice on end of life care.

We were reacting to what was right in front of us, making logical decisions about what was important to us.

I didn’t feel the feels. You can tell, when you look back through my instagram posts. There’s one when we’re in the ambulance being blue-lighted to hospice. That’s usually a 45 minute drive. We did it in 25. In the post I talk about how quick the drive was, but I’m not talking about the dread, the fear or all of the feelings.

Being told there was nothing else they could do, that my baby was going to die and that we were going to hospice to wait for that moment – it was just another thing in a series of things that were happening.

By then I was emotionally numb to the constant depth and severity that come with big moments like that one. I had long stopped feeling my feelings.

That was two years ago, and it’s only now that the genuine emotional backlash of all that is being worked through. I’m emotionally raw and it’s all just under the surface all the time. I feel like I’ve been emotionally flayed with two years worth of emergencies.

But we’re in a time of calm at the minute (kind of). It’s been a year since Kai’s last admission (can we take a minute and just marvel at that?!), and we’ve enjoyed being at home. Don’t get me wrong, there is always and forever the tense anticipation of it everything going downhill. I feel like I’m constantly on edge with ‘is this it? Is this the beginning of the end?!’

But at least I’m feeling the feels. The gap between feeling the feels and what’s happening, it’s closing. It’s hard, because I don’t know how to manage the feels and cyclic grief and all the things, but I’m trying.

Oh special needs life. Onwards we go.

On making hospital appointments efficient as possible

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Hospital visits are stressful. Today we had an appointment with our epilepsy paediatrician that ended up being a two and a half hour visit. Not with the paediatrician (in fact, our appointment had been rescheduled without us knowing, so we were squeezed in between patients. We carved out half an hour of someone else’s appointment. We should have hand an hour with her – I’m frustrated!).

Needless to say, I went in armed with a list. I had the cheat sheet ready (mainly with a printed a4 sheet with a list of medications and dosages so we don’t need to waste time writing them out) and a list of things I wanted to cover.  We talked fast. About Mikaere’s seizures and med changes and vomits and dropping a weight percentile, about referrals to respiratory, Gastro and a developmental dentist. He had a rash on his face, and needs bloods for his metabolic consultant and a hip X-ray for his physio and a strength/needs assessment for his educational psychologist. She measured his head and listened to his chest and felt his liver.

We got a lot done, and as I wheeled Mikaere out (with the rain cover on to keep him from coughs and colds and germs of everyone else in the hospital) I had a new list of things to chase and follow up.

First a nappy change and a flush, and then to the paediatric bloods room. I liked this hematologist, his name was Rafal. He was experienced and didn’t have to prick Mikaere several times. He used a butterfly needle to collect blood in an adult tube (the red one; with no added mixes) and decanted into the smaller bottles. I like that, it meant it was quick, and less damage was done to my boys arm. Mikaere was a trooper, no tears, no drama. He even had a smile for Rafal. I appreciate that there was no screaming, and Rafal did everything he could to reduce the pain and reduce risk.

We paused in a side corridor so I could give meds and put then feed on, then to visit the CCN (community care nurse) to pick up some giving sets (that’s another fight we’re fighting, as nutricia have changed their giving sets again and the new alternative doesn’t work for us) and some catheters and to get a form signed.

And then onwards to X-ray, to look at Mikaere’s hips for hip subluxation. Mikaere was well behaved, and tolerated it like a pro. I laughed when he peed all over the table (I’d warned the radiologist he would). And then another flush, and home again to meet our hospice nurses.

But this is what it is for us now, I work hard to ensure our visits are super super efficient. That bloods and xrays work alongside other appointments (ideally on an off day so we’re not waiting alongside other clinics). It also means we’re not there all the time, keeping our hospital visits to a minimum is always a priority for us. Reducing risk of catching something from someone else.

It’s hard, and I power through the day. But this is what our day to day looks like. This is our ordinary at the minute. I hate it, hate it hate it hate it. But it’s what we do to keep our boy safe. So hey ho. Onwards we go .

To my son I’m a giant blob

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I found out something huge today. We met with our ophthalmologist. A lovely man. Who whistles and sings to Mikaere and works hard to illicit a smile. He’s lovely, and makes the effort to be sure I know what’s happening and am at ease. I wish all doctors were like him.

We know Mikaere’s vision is not 100%. We know he can’t see everything and relies heavily on his other senses to understand what’s going on around him. He explained Mikaere can’t see. He can’t SEE. He doesn’t occupy the same visual space as I do, because he can’t SEE like I do.

This, more than anything, has knocked me for six. My baby can’t see like I can. To clarify: he’s not blind. He can see some things. The example was it was like looking through a piece of Swiss cheese that keeps moving. Or listening to a foreign language where you know four or five words, you can grasp some meaning when you hear a word you know, but it’s gone so quickly and you’re back to incomprehension.

Another, more visual example was this. We see this:

A person with CVI might see this:

Our ophthalmologist officially registered Mikaere as sight impaired. Essentially, there is nothing wrong with his eyes, his brain isn’t processing the vision signals like we would. And that’s everything.

Just… of all the things we’ve been focusing on, vision was not high up the list and it should have been. I’m only just now realising what this means for him.

It means everything is moving too fast, everything is happening too fast for his brain to catch up. It’s why he looks away before he reaches for a toy. It’s why he startles so easy, because he uses his hearing to compensate and he can’t anticipate actions that make noise (in addition to his moro reflex being crazy).

I’m not sure how to help this, how to compensate, how to give him a way to navigate his world.

I just… my son can’t see like we can. He doesn’t exist in the same visual world that I do. I’m heartbroken for him. He lives in a completely isolated world, where not much makes sense. Honestly, NKH is rubbish. Absolute rubbish.

Drinking shouldn’t be a Coping and Resilience Strategy

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Following up on that last post, I want to talk about how I went to a ‘Coping and Resilience Strategies’ talk at our special needs playgroup centre a while back (way way back). You’d think it would have been well timed, right?

There was an educational psychologist who had a special needs son who had come to talk to parents like us. She was ten years ahead in her special needs journey and felt she was able to come chat to us. Perhaps it was that I was the only parent there with a terminal diagnosis, and one of the few who was regularly receiving announcements of other children we knew who had died, but her talk didn’t resonate with me.

First, she talked about coping. I think there is a huge difference between coping (which we all do out of necessity to keep our children safe and alive) and coping well.

I’m not coping well. And you can tell. I’m snappy, unfocused, and go from fine to deep deep in the abyss. In the meantime I have to hustle to get myself moving, but that hustle has zero results, I’m hustling but I’m a mess. I’m easily distracted and really have to force myself with lists and checks to make sure Mikaere’s needs are met (I’m not talking about his basic needs, I can do feeds, nappy changes and meds and appointments with my eyes closed. I’m talking about chasing up that gastro and respiratory referral that went nowhere, calling back the wheelchair lady who called to book an assessment and his anti-epileptic dose needs increasing and I should reach out to the neurologist and I need to chase the nerve/skin biopsy sample to make sure the fibroblasts get to the researcher, and I need the community nurse to update the gp with his latest doses cause the pharmacy got a prescription with the wrong ones last week. The OT needs chasing, because he’s due another block, and his chair needs a new pommel/groin strap that makes his current chair unsafe. Can I fit in more CME or ABM? I need to chase the therapist…) That stuff, the never ending special needs loose ends that would fly off into the wind if I’m not careful).

But it’s work. It’s work that requires attention to detail and focus and time and I have none of those things. At first I was all make it achievable. Do five things. Just five. But then Kai had a seizure or an unexpected therapist showed up on the wrong day or the carer was sick and couldn’t come and my day was derailed. My days are always derailed.

So come 3pm and I haven’t eaten and am only half dressed (despite the three therapy appointments we’ve already had) and I need to hustle to get Kai down for a nap and still do his blend before 6pm and just… I’m struggling. I’m struggling. It’s all hands on deck, what do I need to do to get through.

Anyway, back to that talk. She didn’t give us strategies for coping. She asked US to provide strategies. Shut up. I have no strategies, which is why I came to the damn talk. I want to know what it is I can do that fits in Kai’s day that’s affordable that I can do.

There weren’t many. Exercise and therapy and socialising (aka, drinking. Not even kidding). But they’re all things that get cancelled on a derailed day, and our days are often derailed. The main thing on the list that I could do was drink. I’m not even kidding. But I can’t use alcohol as a coping strategy because I need to be sober for Kai.

After the not very helpful talk I went to the local pub with a handful of other social needs parents. I drank gin and bitched about the inefficiency of the NHS central booking/appointment system, and nodded as other parents bitched about EHCP’s and having to fill out the DLA forms and fighting with their dieticians about the blended diet. It was beautiful. But that was one night, when my boy was safe at home with Sam and a nurse. That’s not a regular thing, and so sue me if I don’t want drinking to become my main coping mechanism.

My point is we live the special needs life. It’s hard. So hard. But we move forward out of necessity, because these are our kids lives. We cope out of necessity. We show up. But that doesn’t mean we’re coping well.

Coping well, that’s what I want to know how to do.

It occurs to me, that as I reach well over two years of living the special needs life, as he gets older and requires more support, and the support we get is less, I now understand why special needs parents ahead of us have the attitudes they do. They’ve been in the wars longer, they’re less green, and they don’t have answers either.

I don’t have any answers. Hey ho. Onwards we go.

On Seizure Monitors

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Gadgets. We have them coming out our ears. One problem we have is knowing when Mikaere is having a seizure when he’s sleeping. His seizures are silent and horrid and we need to know when he’s having one so we can give relief medication if he needs. At the minute we have night nurses a few nights a week, which is helpful. They stay awake and watch Mikaere. When we don’t have night nurses, Sam and I sleep in shifts. But the problem is in the wee hours. Sam’s shift usually goes until around 2am, and typically I’m up for the day around 5, 5:30am. In those inbetween hours, it’s usually whoever is around, or whoever is the most awake.

Except, you guys, we’re SO sleep deprived. We’re special needs parents, so of course we are. But when you’re sleep deprived, we run the risk of missing something in those inbetween hours. It scares me no end. So, gadgets. We have all the gadgets.

We have an angel care mat, and while that’s a relief, it only alarms when Kai stops moving for more than twenty seconds (which is to say if he stopped breathing and was completely still for twenty seconds). But with seizures he jerks.

We tried wearables next. Specifically the neebo, as his feet are now too big for the owlet. Except the neebo wasn’t accurate enough for us. Additionally the strap left red marks on his arm.

Then we tried the RayBaby, a gift from a friend. Ray baby is a baby monitor that tracks breathing. As Kai breath holds and then hyperventilates when he’s having a seizure, we’d hoped that RayBaby could help. Except that RayBaby couldn’t distinguish between an empty crib and one with a baby in it. It’s still very very beta. Womp womp womp.

Our saving grace is the pulse oximeter my Mum got Mikaere. It’s an old Massimo Rav 5 that a client gifted as they were upgrading their kit. It has a probe that goes on Mikaere’s toe and measures his heart rate and o2 saturation levels. When he has a seizure his heart rate sky rockets and his o2 drops – we have alarms set to go off when they hit certain thresholds.

He wears it every evening when sleeping, which means we don’t need to be as hyper-vigilant as we used to, game changing when everyone is exhausted.

The only downside is he can’t wear it all day. It’s too big, and the minute he’s awake he’ll kick and wriggle and the probe comes off. Still, it’s good when he’s sleeping, which is when he’s most likely to have a seizure.

We’re also on the waiting list for a seizure movement monitor from Muir Maxwell, and Epilepsy Trust in the UK, but I’m not convinced it’ll be any better than the pulse-ox to be honest. I don’t know you guys. Seizures are awful. They’re really really awful and I’m terrified I’ll miss one and that will be it. SUDEP (Sudden Unexpected Death in Epilepsy – it’s when a person with epilepsy dies without warning and where there is no other obvious cause of death) has me incredibly fearful of falling asleep and missing something. I guess it’s a special needs parents thing, where you go to sleep but you’re not 100% sure your baby will still be alive when you wake up. The Fear, I have it.

Epilepsy parents, what do you use to monitor your child?

On the Upsee

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Have you heard of an upsee? It’s a harness that allows kids with special needs to walk. You strap a harness to yourself and attach your beautiful special needs baby to the harness, and together you walk.

You guys – kids who have never had the chance to walk are WALKING!

You can bet we got one for Mikaere (thanks to a grant from the amazing Eilfar Foundation) and we were pretty keen to try it out.

Well, it turns out my legs are too short, or Mikaere is too tall so it doesn’t work well when it’s the two us, but with Sam or Andy (Mikaere’s grandad) it’s magic.  For a small while, our boy walked. He rocked on his toes and did the hockey pokey and he was upright and WALKING.

I can’t being to explain how huge this was for us, my emotions just went all over the place and I wanted to cry. He NEVER gets the opportunity to do this, to walk around the kitchen, walk about the garden with his grandad. He’s always strapped in, and wheeled around. Never ever has he been in the position where he can walk, even if it is assisted.

I didn’t know this, but my boy is tall, so tall. And he’s got the skinniest little legs and the sweetest knobbly knees! The best bit is when you’re wearing him, you can feel him *want* to walk. You can feel him lift his feet in anticipation and move himself forward. It’s beautiful. So so beautiful.

I’m aware that this amazing bit of technology only works for us because Mikaere’s head holding has improved dramatically. If he can hold his head up, that opens up all sorts of interesting opportunities for him.

It’s amazing hey? We’re pretty pleased.

On the support from Infinis

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We have a village around us, for sure. I’ve spoken already about how Kai’s Grandad Andy has rallied support through his work at Infinis. Mick, his colleague, ran everyday for a month last year for Team Mikaere.

To say thank you to Infinis for choosing Joseph’s Goal and Team Mikaere as their charity of the year we went up to visit. Quite a long time ago, (it was in October!).  They’re just wrapping their year now, and I wanted to say thank you, because this company went over and above.

When you walk into reception there is a giant poster of Mikaere and Andy. It’s right there, as you walk in the door. That’s how much they’ve got behind us.

When we visited we met lots of wonderful people, and I delivered a bit of a spiel (I was very emotional, and I cried. Telling groups of people about Mikaere’s history and his diagnosis never gets easier) – I moved it on, because I don’t enjoy crying in front groups of strangers, and we did a fun Q&A session. Mostly I asked them questions, how many people had raised safety concerns? (The company makes a donation for every time someone raises one). I asked how many people shop on Amazon, and asked them to use Amazon smile with Joseph’s Goal as their charity. I asked how many people had kids, and asked if they’d buy and Eva book.

And then they asked me questions. About the research. About his medication. About how the genetics work.

It was a lovely visit. It was lovely to meet people who were raising funds for us, who were helpful us find a future for our boy.

We’re grateful for every person who is on our team, and Infinis is clearly in our corner. Thanks Infinis, you guys are the best.

On raising £120,000

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Every month we get an update from Joseph’s Goal, who sends a super in-depth spreadsheet on how much, we as a team, have raised in the last month.

At the beginning of May we ticked over £120,000 pounds. I just – YOU GUYS! That’s a phenomenal amount – and that’s all of you. That’s everyone who has ever come to one of our events, who has ever run a marathon wearing a Team Mikaere shirt, who helped walk the Thames Barrier or bought an Eva book. That’s every Inifinis employee who has ever raised a safety issue. That’s every BV employee who has run around VondelPark or up Snowdon or did Tough Mudder, or just donated to those who did. For those who ran marathons or half marathons or 10K or 5k or just, didn’t run at all. For Penny + Tony who run a BBQ for Kai every year, for the Toddington Methodist who picked Joseph’s Goal as their charity of the year two years running. For those who have organised a pub quiz, or a wine tasting, or had a bake off. For those who had a charity poker game.

Thank you. When Mikaere was born that number seemed impossible, and now we’ve raised over and above.

Thank you for being on our team. We love you guys, our gratitude for all that you do to help give us a future with our son is overwhelming. Every donation is personal to us. Every message, run, video – that’s personal to us. Every single pound – we’re grateful. Unbelievably so.

For every person who has ever made the effort, who has ever given what they could spare, who has ever fundraised – we are beyond grateful. You’re helping fund a cure for our boy. It’s personal for us. Every single donation is personal to us. Every single person who has gone out of their way to help us raise money, that’s personal to us.

So thank you. We love you more than you know, and we’re overwhelmingly, genuinely grateful.

PS – Right now, Katy is running 30 Park Runs this year, and is asking for a £1 donation per run. Margot just ran the Milton Keynes Marathon for NKH, and a team of BVers (led by Sam!) just completed their Tough Mudder experience. Please donate – please support these people who are supporting us.

If you’d prefer – please buy an Eva book (seriously, they’re only £4.95, and all the royalties go towards NKH Research). Or share one of the eva books. Please set your Amazon Smile Charity to Joseph’s Goal.

Every single donation makes a huge difference to NKH research, and has a huge huge impact on Mikaere’s quality of life and the hope we have.

For every person who has ever asked what they can do to help – this is it. Please run a fundraiser. Please donate. Please help us raise the money so we can find an effective treatment for NKH, and for Kaikai.

Please donate. We love you.