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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.

The Just In Case Kit

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We have a lot of kit for Mikaere.  Things that he might need. Our paedatrician once called our flat a mini hospital ward. When you walk into the spare room there are oxygen tanks. And there are nasal cannulas and a suction machine with a kajillion catheters. There is the stat monitor we cart around in the buggy, just in case. We have pumps and giving sets for the days that Kai’s too poorly to manage bolus feeds. We have a tool box under our bed. It’s filled with emergency just in case meds and IV equipment.

There are three giant plastic boxes in our living room. One is filled with just in case meds. Powdered antibiotics. Seizure meds. Movicol for constipated days and gaviscon for refluxy days. There is one for all the extra stuff. There is numbing cream just in case we need to do bloods, sterile kits, aprons and creams and spare ngs and all the rest of it. The third is a giant box full of enteral syringes, just in case we run out.

We have at least three boxes of medical latex gloves, just in case you’re doing something that requires gloves. 

When we first got all the kit, the just in case everything was overwhelming. So much stuff. Now? Now this is our new normal. I can pack up the buggy in 10 minutes (thanks to being extra organised and having a kit ready to go), printing off an updated cheatsheet for the new whoever from whatever appointment, and gathered all the extra whatever we need for the day from our stash.

It works well enough. Mostly. However, it doesn’t work so well when I’m somewhere that requires me to park the buggy. It means I can’t leave controlled substances (aka seizure medication) in the buggy, and I can’t leave a tank of o2 just hanging about. Or quite expensive stat monitors. All of those things no.

An outing without the buggy to carry our gear requires some planning. An overnight stay requires spreadsheet-level organisation, and when we arrive at our destination, we descend with our equipment and take over the space.

Still, I find it comforting to have all the things, just in case. Sometimes it can mean the difference between being in hospital and not being in hospital, being able to manage at home or while we’re out and about. Worth it, hey? If I’m able to keep my boy out of the A&E, it’s worth it a million times over.

 

The reason I write this post is because I overheard a new father exclaim over the amount of gear they had for their (neurotypical) newborn. A wanted to share our perspective with him, but couldn’t, because I’m a stranger and was eavesdropping. It’s always about perspective, hey? Because from my perspective, all his stuff can fit in one bag. Food, entertainment, nappies + a change of clothes. I could fit that in my *handbag* and be positively delighted. We don’t live that life. So hey ho. Onwards we go with all our piles and piles of just in case stuff.

NKH Awareness Day – Help us cure NKH

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It’s NKH Awareness Day today. I’ve been posting all week on facebook + instagram about NKH. Facts and trivia (as much as rare and terminal metabolic disorders can have trivia).

Here’s my ask: Instead of your usual flat white, please swap your coffee today for a donation. Please donate. Please donate. £3. £5. £15.

If donations aren’t your thing, please buy an Eva book (all royalties go to Joseph’s Goal). Please change your amazon smile charity of choice to Joseph’s Goal. Please change your profile picture on facebook to the NKH frame. Please share this post.

Today is the day, where once a year we as an NKH community make a big push. Our lives are hard – you know this. Not every family has the means or resources or support to fundraise, and so most families ask once a year, on this day.

Here’s what I can tell you. Your funds are making a difference. In the last year, there has:

  • Been the creation of zebra fish, mouse + worm NKH models. This is HUGE. Researchers can use these models to better understand how NKH works, at a much faster rate.
  • There has been progress in understanding how NKH works (in that it’s not *just* high glycine that causes issues, but also all the metabolic pathways that need molecules from the broken glycine system).
  • There has been progress in narrowing down which currently approved FDA drugs might work as a chaperone for NKH (this is also HUGE).
  • There has been signs that gene replacement therapy can be successful in mice (this is also SO HUGE, this is a CURE)
  • There has been research into replicating NKH into an algorithm for diagnostic use, which is HUGE and AMAZING and has the potential to help so many families.

There is more detail and more information that I can’t share, as it’s all unpublished and I’m being intentionally vague, but I want to share that progress is being made in NKH research. It’s progress that’s being funded by you.

For every £5 you’ve donated to Margot’s Marathon or Katy’s Run, or for every wine you’ve bought at a wine tasting, for every BV person who is doing Tough Mudder – you GUYS! You are paying for real research, real research that is underfunded, real research that has the potential to improve children’s lives dramatically.

So please donate today. Please go out and tell someone about NKH. Tell them about Mikaere. Organise a fundraiser in your office, a bake off, a poker match, a fun run. The stakes are small, and every single donation helps. Every single donation is funding research that will change lives.

Happy NKH Awareness Day. Thank you for being in our corner. We love you.

On moving between fear and loss

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In the NKH Community there’s a death bandwagon that happens after a family announce their angel has gained their wings. Hundreds of messages are sent to the family. Publicly every NKH page has an announcement, with a picture. It takes over facebook, really. Hundreds of comments are left for the family, and hundreds of comments are sent to the people who posted about the community loss. They have prayers, and are sorry for all the losses and are sending so much love (I’ve said those platitudes too, no judgement here).

I’m not sure how I feel about this bandwagon – this giant flood of not so comforting posts. I’m torn.

I’ve been that poster. I’ve posted about more children passing than I would like too. I said I was devastated, and heartbroken and struggling. But truth is for most of the children I’ve posted about – I’d never met that child. I’d known them through the community, through the posts that their parents made. The pictures they put up. The messages they sent. Halle Mae. Kaleb. Mayanak. Cathryn. Gregory. Siem.

I say their names to remember them. They’re important, and they were so loved and will be fiercely missed.

But truth is, I never met them. I don’t have relationships with their parents. The grief of their parents I imagine is huge and very much theirs. But I don’t know them and I can’t know for sure. My grief? I didn’t know it at the time but my grief is fear that it will happen to my child. I posted about these children in such a blithe manner. I really did. I had feelings and I took to the internet (I still am, clearly).

But now I’ve had tiny insight to the other side. Alexander, a boy I knew in real life outside of the internet and met, several times in the last two years died. I adore his Mama, and we’d send messages and do visits and invite each other to the few social gatherings we arranged each year. We’re on each others Christmas Card Lists. I knew he was ill and visited when I could. I knew when it was days and couldn’t visit and it broke me. They graciously let us know when he’d gained his wings, and oh. I had a whole lot of complex feelings, and I felt so strongly for his parents. I struggled, and thought of him constantly.

It was raw, this grief. Because this grief wasn’t about my son, it wasn’t about how I felt about NKH, it wasn’t a fear that one day NKH will take Mikaere. This grief was about Alexander, the dent he’d made in our lives and the hole that exists where he was. I was feeling his loss, specifically. His loss, and such compassion and love for his parents and their loss.

And after his parents let the world know and the memorial posts came flooding in I wanted to tell everyone to shut up. I didn’t, of course. They have grief and feelings and love and none of it was malicious and they have every right to post and make videos and share their grief and they should absolutely do that.

After some gentle examination I worked how I was upset because I could see the difference in my posts. The difference between grief and my fear for Mikaere, and grief that’s because I feel the loss for Alexander specifically. I wanted to say the later feels more genuine, I don’t think that’s true. It’s grief. Complex and unwieldy. I don’t know if that difference even matters. My grief is all over the place, and I’m trying to think and feel my way through it.

I’m struggling. I don’t know how to feel about it. But I do know that I want you to know about it. Not my grief and my feelings but I want to talk about grief. I wish there was more open, genuine talk about grief and death. I can’t help but feel that if we as a society were more open to grief and death, and if we were okay to sit with the uncomfortable together for one hot minute without trying to shy away or fix the unfixable the burden might be less. That we might be able to sit together to remember the people who are important to us, that we could openly feel and say how grief is complex. How death is unfair and brutal and a relief and grace and there is anger and pain and love and hurt and it’s all mixed in together. That we can love and miss and grieve openly without someone telling us to pull it together, or hide it away.

And I get how crazy that is, because here I am trying desperately (and openly) trying to come to terms with my grief over and over and over. In one post after another. I’m trying to be open to feeling what I feel around grief and death. Right now it feels so wrong, and hurts and it’s heavy and huge. I can’t help but think there must be some other way (or rather, that there must be some better way forward for managing those feelings). That there is a way to have a better and healthier relationship with life, illness and death.

We’ll see. I’m sure there will be more posts on grief.

On Kai’s wonky eye

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Mikaere has a wonky eye. It’s not called a wonky eye, it’s called intermittent left hypertropia with exotropia. Big words, but essentially means that Mikaere isn’t always able to align his eyes in the same direction. It would be but like going cross-eyed, but only one eye (his left), not both.

Hypertropia means it floats up (instead of staying in the middle) and exotropia means it floats out (the opposite of going cross eyed).

There isn’t much that can be done to fix it. Surgery (which we won’t consider). There is a study happening on patching, but there isn’t enough evidence that it would help for me to want to put Mikaere through that (Quality of Life is always front and centre of any treatment plan).

Apparently it shouldn’t effect his vision too much, and is a side effect of NKH. What’s more it’s not all the time, mostly when he’s tired or stressed. If it is bothering him, he’ll stop for a moment, still himself and close his eyes. When he opens them sometimes his eyes reset themselves and orientate in the same direction.

The trickiest thing for me is the stares when we’re out and about. Being in the supermarket and a kid asks ‘what’s wrong with that babies eyes?’ before being pulled away by their parents. (Sidenote: please don’t do that. Encourage your kids to ask questions. Please just politely ask instead of making something up or shushing your kid).

As a side note, it turns out Mikaere is ever so slightly (3 dioptres) far sighted! I get the impression this is a common NKH symptom, and easily fixed with glasses. However, I don’t necessarily feel would improve Kai’s quality of life enough to warrant fighting with him to keep glasses on his face, and our opthomologist didn’t feel strongly, so we passed. It has helped us though, when we hold things for him to see, we start from far away and move it forward until he focuses on the object. Even just having the knowledge that he’s ever so slightly farsighted has changed the way we interact with him.

The other thing is that he’s got less farsighted as he gets older, and we’ve also noticed that his eyes are less wonky. (By that I mean, the frequency of his wonky eye periods are less the more well he is, and they increase when he’s poorly or tired).

Hey ho. I think it’s just ‘another thing’ we manage hey. Rare metabolic disorders and wonky eyes. Onwards we go!

 

On QRI Laser Therapy for Reflex Integration

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One of the things we fundraised for was for Low Level Laser Therapy (LLLT) When I first heard about QRI from a few NKH Mums – I raised my eyebrows and thought ‘hogwash’.  Three months later I was on a train to Birmingham without my guys to learn how to do it. It is a bit… alternative. Very woo-woo. The website is very 90s and the copy on the website is very… holistic and intuitive. For someone who prefers decisive facts and firm science, it was a big leap to get to the point where I was okay to try it on my child.

Now before I get to the point where I’ve joined all the dots – here’s the thing: if there is no harm and there is possible benefits, I’m keen to try it. If it will help Mikaere and it definitely won’t hurt Mikaere, then the risk for trying is low. So we try it. That’s where I started – the possible benefit for Mikaere and his health was 100% greater than the possible risk (because other than time and cost, there is no risk. It’s just light).

So I went on faith. And lots of anecdotal kool aid success stories from other special needs parents.

I got on a train, paid several hundred US dollars and went to learn about a protocol that suggested that with lasers, I might be able to help my son hold up his head.

Here’s how it works. There are a few premises, so let’s start with those.

  1. The first premise is that cells in our body can take up energy from light. It’s called photobiomodulation. Essentially, there’s a step in the process that makes ATP that has a copper middle. Copper can absorb light in certain wavelengths to give it an ‘energy boost’.The Science, as I understand it: Each cell in our body has a little power factory, called mitochondria. It creates ATP, which is what powers every function in every cell in our body. Cytochrome C Oxidase (CCO) is a step in the mitochondrial electron transport chain – the part that helps make ATP.  It transfers one electron (from each of the four cytochrome c molecules), to a single oxygen molecule, producing two molecules of water. At the same time, four protons are moved across the mitochondrial membrane, producing a proton gradient that the ATP synthase enzyme needs to synthesize ATP. CCO has two heme centres and two copper centres. Each of these metal centres can exist in an oxidized or a reduced state, and these have different absorption spectra, meaning CCO can absorb light well into the NIR region (up to 950 nm). Which is to say wavelengths in the red (600–700 nm) and near-infrared (NIR, 770–1200 nm) spectral regions, can be absorbed by the CCO centres, which causes an increase in mitochondrial membrane potential (MMP) above normal baseline levels (increasing the amount of ATP made) and leads to a brief and rather modest increase in generation of reactive oxygen species (ROS) – which is a number of reactive molecules and free radicals derived from molecular oxygen. It’s used in a cell signalling and cell cycling.In a nutshell – given the right wavelengths of light, the mitochondria of a cell can absorb the photons from the laser, which stimulates the cell – increasing the ATP made and improving the signals between cells (amongst other things).
  2. The second premise is about reflexes.  We all have reflexes and they can be retained, preventing development. We all have a number of reflexes designed to help our bodies move through developmental phases. Reflex’s are held in what is called the Reflex Arc – it’s a neural pathway that controls a reflex. Most sensory neurones do not pass directly through the brain, but instead through the spinal cord. This allows for faster reflex actions to occur by activating spinal motor neurones without the delay of routing signals through the brain. When babies grow, the reflex triggers a certain number of movements automatically. These movements pave a set of neural pathways that, eventually, will allow the reflex to be integrated. Once a reflex is integrated, it’s no longer needed and the body will no longer use the reflex.Here’s the important bit: if there is an issue in the brain, or in the central nervous system (like, say because you have Nonketotic Hyperglycinemia) – these reflexes may not be integrated correctly or at all. They might be retained. If a reflex is retained, the child will not easily be able to progress. If they do progress, they’ll need to compensate for the retained reflex.
  3. The third premise is for reflexes that aren’t integrated can be integrated. Or rather, helped along. If reflexes are typically integrated with repeated movement, repeated, rhythmic movement (or, say, cell stimulation in particular points) may be able to help integrated reflexes by forming neuropathways. Even in brains with neural damage, on the idea that our brains have a certain amount of neuroplasticity, and if possible, they will find a way. This is where things get a bit more… flexible. But, I’m willing to give it a go. Especially because there are so many different success stories from other parents.

And so I went to a workshop held in Birmingham, and I had my first experience of laser therapy.

Woah. Buddy.

I sat through the entire half of the first morning and was so annoyed at myself. I was definitely wasting my time and I’d wasted so much money and I was very very very glad I had not spent thousands of pounds on a laser. The content was way to woo-woo. So far removed from science, and so far removed from what I knew and expected. I half listened, and tried to figure out if I could get a refund on my hotel and a train ticket back to London.

Then the ‘interactive’ part of the session happened. Where you test the reflexes of your partner, do the protocol, and then retest. I was positive I’d feel nothing (it’s just LED lights, I told myself) and that nothing would change.

Here’s the thing. I lay down, and almost instantly the lasers made my body relax even when my brain was still going a million miles an hour. What the heck. I’d never been in a situation where my body was calm and relaxed and my mind was not (it felt very very odd). You could feel your body responding to the lasers, so I kind of relaxed into it. Something was definitely happening, and there must be science behind it. I was sure. I was even more surprised when my reflexes had changed rather dramatically in the test afterwards – profoundly different from the before test.

It’s possible that it was psychoshamtic, but it’s also possible the laser was effective. Hard to know. So I stayed on, and that first night I went on an epic research deep dive. Here’s a small snippet of what I found.

  • LED study on that showed significant improvements in executive function and verbal memory of Chronic/Traumatic brain injury patients after LED/near infra-red light therapy. (Source)
  • LLLT decreased the muscle spasticity of children with spastic Cerebral Palsy (Source)
  • LLLT/photobiomodulation – cells exposed to low-levels of red and near-IR light from lasers or LEDs either stimulate or (less likely) inhibit cellular function, leading to reduction of cell and tissue death, improved wound healing, increasing repair of damage to soft tissue, nerves, bone, and cartilage, and relief for both acute and chronic pain and inflammation. (Source –  okay, so not a study, but I got half way through the references before I decided it was probably the most succinct version about LLLT)
  • Applying near-infrared light to the head of animals that have suffered traumatic brain injuries produces improvement in neurological functioning, reduces neuroinflammation, and stimulates the formation of new neurones (Source)
  • The rats subjected to 500 mW of laser irradiation had a significant decrease in glutamate, aspartate, and taurine in the cortex, and a significant decrease in hippocampal GABA (Source -this one’s helpful, because if there is a decrease in glutamate, the NMDA receptors which glycine binds to are less likely to fire)

They’re mostly the abstracts, because I don’t think I’m allowed to share openly the full studies, but there you go.

We got a laser and we’ve been working it into Mikaere’s routine. Sometimes we manage it, sometimes we don’t. We think we’ve seen some gains, but because we’re doing so much with Mikaere it’s hard to attribute it directly to the laser. We’ll see. I’ll keep you posted.

 

On falling out of the red chair

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Mikaere has a red tumble form that we use a million times a day. It’s portable, he fits in it and it’s convenient for eating (as he needs to up upright while on feeds). He can wriggle and kick and bat things in it, he’s not strapped down, he’s not confined.

Except maybe he SHOULD be. Kai has learnt how to fall out of his chair. It’s a very slow motion kind if thing, it takes several minutes for him to topple over the side, moving his arms and shifting his weight until his top half is heavier than his bottom half holding him in the seat.

Sure enough, he’ll go over the side (we’ve only let him do it a handful of times, usually you can see it coming a mile off and reposition). The first time he screamed. The second time he was a bit bewildered. And third was definitely intentional and had a big grin.

It’s hilarious. And I’m glad he’s making choices for himself about where he wants to be.

Update: We’ve had to strap him in now, as it’s getting a bit dangerous. The chair is no longer a safe space to be unstrapped!

On Portage and Shaving foam

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We’re on the portage service, which is basically play therapy. Our lovely therapist Jackie comes to visit and brings a bag very much like Mary Poppins carpet bag of amazing. There are always interesting wonders in her bag.

A few weeks ago she bought by shaving foam. We’d been struggling to keep Mikaere entertained. While I’m struggling, anything that requires spontaneity or effort is tricky. Well, enter Jackie and her magic shaving foam, and Kai went to TOWN.

I wouldn’t have thought about shaving foam before. I’m not adverse to messy play, but it’s hard to get out of your bubble and find things that would work for Mikaere that he’d enjoy. Shaving foam was definitely a treat and it went EVERYWHERE. It was hilarious, and amazing and we all had a great time.

Thank goodness for play therapists, hey?

Still thinking about Grief

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Okay. I’ve spoken to so many people about grief. About people who work in hospice, who work in hospitals, who have lost parents or partners or children.

Grief is huge and it touches everyone.

I feel like I’m in the (fairly) unique position of the special needs life with a terminal child. I grieve the special needs life, that we never got to experience the special needs life,that Kai has NKH. I grieve children we know and love who have died, and those that will die. I grieve that one day Kai will die.

My present and my future is filled with grief. Constant. Cyclic. Never ending.

I’m going to tell you a thing. I don’t tell you because I’m looking for pity, but I do feel like it’s a part of the path we’re walking.  I’m down you guys. Not in a ‘just a bit down, a bit sad’ way, but in a ‘lost all hope currently in the dark abyss’ kind of way.

Intellectually I’ve always know that my baby is going to die. I’ve always know that children with NKH die. I’ve always known that my child is disabled.

Emotionally I didn’t feel until these last few months. There are children *dying*. Children have DIED. Halle Mae. Kaleb. Alexander. Cathryn. Gregory. Siem. Those are children who were so loved, and had lives and families and now because of NKH have died. I didn’t know all those children personally, but Alexander (and our sweet friend Rauirí) – their losses both threw me into the left field of murky grief (even now I want to excuse my feelings – my feelings are inconsequential to their families grief, the idea of losing your child is nothing next to actually losing your child).

And as I was desperately trying to manage those feelings, of what it was like to have children you know and love pass away, it became really clear that Mikaere isn’t severe. We cheer on his milestones but what it means is he has a longer life expectancy than we originally thought… except, life length is not the same as quality of life. And then my beautiful boy turned two. As I carried him in my arms, his little head resting on my shoulder, I watched a boy younger than Kai jump through some fallen leaves. Another child walked by, holding his dads hand as he toddled past.

My son is disabled. And that’s hard to admit, because I don’t want that life for him, or for us.

Intellectually it’s easy to say that it would be better if he died sooner, rather than later. He’d suffer less, less seizures, less pain. But I can’t wish for my baby to die, I just can’t.

And I feel stuck in the middle. My beautiful baby boy is disabled and is going to die. Between the grief I have for the children who have died, and grief I have that mine will, and the grief that our life is not the neurotypical… I feel helpless. I feel hopeless.

I feel like there is nothing I can do – literally. I can’t fix this. I can’t fix my baby. I can’t heal him, or take away the NKH or the damage that’s been done. I can’t make any choices that would relieve him of those symptoms. Excellent care, or shit care – he’s still have seizures. He’s still suffering. He’s still hurting. And we’re still stuck in that hard place, the horrid special needs life where Kai has seizures and pain and hospital visits (not all the time, granted. But a lot of the time) and then when all of this is finished, when it’s all said and done, it will be because he’s died. When there have been so many other children we know and have loved who have died… this reality is painfully raw and close.

So. I’m in the dark-lost-all-hope-in-the-deep-abyss place. I’m finding it hard to get out of it, hey. I’m slow to move, tired and I snap at Sam over tiny things. I can’t get myself moving, and caring for Kai is about all I can do (I miss the girl from last year, who was determined to make change and had a million different fundraising things on the go. Where did she go?)

I’m going to ask that you hold all your well meaning comments to yourself for a moment. Yes we’re talking to a therapist who specialises in special needs, bereavement and palliative care, yes we’re very strong and we’re amazing parents and no you probably can’t imagine and I’d really like if you weren’t sorry, or were thinking of us or sending love.

I don’t mean to be callous here, but when you send me the same words that everyone else sends me it becomes meaningless. Platitudes feel insincere and widen the isolation gap because I feel like you don’t understand, like I wasn’t clear enough, or my feelings are too big for you to meaningfully respond to.

The way to avoid platitudes is to be specific – what specifically are you sorry about, and why is that important to you? What are you thinking, genuinely? What thoughts are you sending and why? It’s harder to express and requires more work on your part, but if the connection is genuine, it makes me feel less alone. I read a quote about how words aren’t measured at the speakers mouth but the listeners ear. It seems apt and explains why platitudes are so so shit to receive.

Platitudes aside, here’s what I’d like: tell me something amazing that happened to you today. Tell me something that’s made you laugh today. Tell me something happy.  Fill my comment thread with happy happy things.

If you were about to type ‘I’m here if you need me’ or ‘if there’s anything you need’- here is what I need: a cure for my baby. Here’s how you can help: donate. Fundraise. Run a bake sale/competition at work. Run a 10k and fundraise on just giving. Give up chocolate for a month, and for every craving donate a £1. Start a swear jar and donate the contents at the end of six weeks. Sell something on eBay. Have a fundraising BBQ. Run a raffle. Raise £10. Raise £50. Raise £5000. Raise something.

If you know me in person, please come visit. If you can’t visit, please call me for a chat. Just to say hi. A two minute hello. If you can’t call, or I don’t answer because I’m busy with Kaikai, leave a 30 second whatsapp audio message, so I can hear you. I can’t tell you how heart warming it is to hear someones voice. I’ll take it, greedily, that 30 second audio file. Isolation, I’m struggling with it. That abyss feels deeper when I’m alone all day with my thoughts and a nonverbal baby. As I type this, I’m sat by Kai, who has just had a seizure and is now in that horrible sleeping-recovery phase. I can’t go anywhere, and I’m heartbroken, having to watch him suffer over and over. I’m lonely and scared for our future and I don’t know what to do with myself.

I know, I know, so many people have said ‘just call me if you need, anytime, call me’ and I’m grateful, but I can’t get out of my head long enough to recognise I could use the company and do something about it. Please don’t wait for me to call you. Please just call to say hey,  a two minute conversation when you’re free.

It’s a weird place to be in. I literally don’t see a way to turn. We’re either living the special needs life (which has moments of up but mostly moments of extreme down), or we’re living without Mikaere (I can only think how horrific that would be for us). Both of those options seem unfathomonly unfair and hard and devastating. I don’t know how to navigate through the grief either of those situations. It seems hopeless. My present and my future are filled with so much grief. And so, abyss. That’s where I am right now. Womp.

On the pink dummy

By | #teammikaere | No Comments

Mikaere still uses a dummy, he finds huge huge comfort in it. He’s even able to ‘ask’ for it by making a sucking noise. At this point, if this is the one thing he can ask for and something he finds comfort in, he can have one as long as he wants it. We’re working on hand co-ordination so he can push it back in if it’s falling out (OT loves the dummy motivation, for sure. We practise putting the dummy in a million, billion times a day).

We use NUK dummies, which conveniently come in several sizes. I ordered some from amazon (using Amazon Smile for Joseph’s Goal). Some cute, gender neutral ones.

However what came back were some cute pink chickens. I attempted to return the said pink ones, but amazon said keep them, and we’ll send out the right ones. Okay, that’s cool. Except the new ones weren’t gender neutral either. It was more pink chickens.

At that point I figure fuck it. No one cares if Mikaere is using a pink dummy, and now we have four of them. Pink dummies, just as good as the gender neutral ones it turns out. Gender stereotypes can suck it.