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#teamMikaere

May 02
0

NKH Awareness Day – Help us cure NKH

By | #teammikaere | No Comments

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There is more detail and more information that I can’t share, as it’s all unpublished and I’m being intentionally vague, but I want to share that progress is being made in NKH research.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

Mar 28
1

Still thinking about Grief

By | #teammikaere | One Comment

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.

Nov 26
1

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.

Nov 23
0

On Turning Two

By | #teammikaere | No Comments

Recently our sweet boy turned two. TWO! Can you believe it? We welcomed the day cautiously, another birthday made. This feels different to his previous birthday – there wasn’t any fear. We were so fearful at his first birthday, that it was the only one he was going to have. That it was the only birthday we were going to celebrate (which is why we went big. Big party. Lots of people. Ridiculous cake and food and decorations and everything).

This year? This year it was quiet. A small family lunch with balloons and bunting and cake. Nothing too fancy. Here’s the thing though, Kaikai is so loved. He got a bucket load of cards (thank you all for your kindess in remembering!) and some sweet gifts from friends. We’re so grateful at the kindness others have shown. So grateful. So grateful he’s still with us, despite our doctors predictions. So grateful that he was well on his birthday. So grateful for his little smiles.

Grateful, and forever bittersweet.  But he’s well loved, and he’s pretty happy and content and right now that’s all we can ask for.

Happy birthday little man. We love you more than anything x

Nov 16
0

On our Seatbelt Medical Alerts

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I’ve talked about medical alert car stickers a while back, for alerting emergency response if there was ever an accident that Mikaere was non-mobile, non-verbal and an epileptic. It says in red Nonketotic Hyperglycinemia, so they can’t miss it. It also says Glycine Encephalopathy so they don’t confuse it with Nonketotic Hyperglycaemia, because you know someone’s in a rush that’s what they’ll read and if I’m not there to advocate for my baby you can bet they’ll test his blood sugars unnecessarily.

Anyway, what I wanted to say is that I found these medical alert seatbelt straps, for both the buggy and the car seat. They live on the straps, so we don’t need to remember them. Inside there is a little card with our details, the basics of his diagnosis AND a link to his medical care plan (essentially our cheat sheet).

It’s such a huge thing, my fear about not being able to advocate for Mikaere. About all those what if scenarios. I feel like we live in that space where all the unlikely things happen (a weird kind of luck?) and I want to give him the best shot I can.

So, seatbelt medical alerts. He’s got one on his car seat, and one on his buggy. A simple easy thing we’ve done to help stave off the worst case. Worth it, hey?

The place we got ours no longer sells them (womp!) but there are other places like here or here.

 

Nov 12
1

On Stat monitors and o2 levels

By | #teammikaere | No Comments

There are two little red numbers on the stat monitor, and I’m staring at them, willing them to go up. 92. 92. 92. 92.

92 is too low. I know the guidelines. He’s got to stay above 94 on 1L or less. I check the tank (is oxygen even coming out of this thing? Is there even any oxygen in there? But the needles on green, when I pull out the tube and crank it up I can hear the o2 rush out).

92. 92. Maybe he just needs a minute. I’ve put him down and he’s just fallen asleep. Asleep is when we need to pay attention, when he’s not moving about or working as hard. 92. 92. 92. 92.

Is the stat monitor probe even on correctly? I peel back the blanket to look at Kai’s chubby toes. He’s still, and the little red light is steady and exactly where I left it. It’s not the monitor. 92. 92.

I put the blanket back and reposition the mask slightly, bothering Mikaere in his sleep.

92. 92. 92.

Do I call our nurses? Not yet. I already know they’ll say if he can’t stay about 94 we have to go back into hospital. I don’t want to go onto the ward. I will, if I have to, but I don’t want to. He’ll catch something else there for sure, and I don’t fancy living in a half metre gap along side his hospital bed, sleeping on a plastic armchair that folds flat. With no sleep for anyone, gross showers and shitty food. No thanks.

92. 92….

Do I crank up the o2? Just to see if 1L isn’t enough?

Just as I reach over to the tank, the light flicks to 93. 94. 95. 96.

The relief is overwhelming. It’s not 92. He just needed a minute. I’m on edge, and have been the last few days. He’s back into the safe zone. I feel like I can breathe again.

We’re not in hospital yet, hey? Thank fuck for that.

Nov 07
0

On the isolation of the special needs life

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Over the summer my world got bigger, just for a moment. Sam had some time off, which meant that we could split caring for Kai. It meant some time for me. I worked, for a bit. Travelled some. Essentially I stepped away from the special needs life into what felt like taking back a bit of my life.

And I’m struggling to step back into the special needs world. Don’t get me wrong, I love Mikaere, with every fibre of my being and he delights me like no other. I love being his Mum.

But in the special needs life, I’m not just his Mum. I’m his nurse, and his chef and personal assistant and therapist and every moment is about monitoring and repositioning and anticipating his medical needs moment to moment. Watching the time for his meds, blends, flushes and sterilising. Repositioning him upright so he can cough, watching for those tiny moments where I can interject baby led physio, and a lot of the time not baby led Physio or OT or laser therapy. Keeping him entertained, or settling him to sleep.

It’s making myself smaller to fit into the very intense schedule of his day, managing the nurses and therapists and remembering appointments and chasing the thirty or so different things we’re currently juggling.

It was hard to leave Mikaere with Sam so I could have some time. It felt selfish. At the same time, it felt like falling into an oasis after walking months in the dessert. I got to speak to people outside of our nurses. I danced through some side hustles. People talked to me as if I was a competent adult. I didn’t have to fight anyone. I found some independence for me.

And now, making myself smaller, putting aside myself for the same same mundane, for the small moments, for the intensity of Mikaere’s day to day. I’m having a hard time with that. I find it hard to get moving, I’m leaning heavy on Sam and I’m spending too much time in the ‘what if’ daydream.

Most neurotypical Mums, they get to go work (or not, if they don’t want to). They can leave their kids with babysitters and have nights out with their partners. They can travel with their family. They can take public transport and take their kids where the crowds go. Their kids, eventually, grow to be somewhat independent. Where they can play without you sitting right there to make sure they don’t have seizures or aspirate or vomit or whatever else might go wrong.

I’m whinging, I know. The special needs life sucks so hard for everyone.

I read a book once, a fiction something a rather, where they played the champagne game. They’d open a bottle of champagne and bitch, for a moment. And then say something they were grateful for.

I’m gutted that I can’t go back to work full time, but I’m grateful we have the means so I don’t have.

I’m beyond gutted Mikaere lives a life less than the neurotypical life, but he’s here and he’s happy and content and I love him.

I’m sad that when we travel, it will always be split – Sam, Mikaere and I are unlikely to travel together internationally (boo immune vulnerabilities and planes), but I’m grateful that this summer I’ve had the chance to visit some phenomenal places, bucket list destinations.

I’m sad that our family doesn’t get to walk the neurotypical path, but I’m grateful I have a family, and we’re all well loved.

I’m sad I’m going back to my day to day with a heavy heart, but I’m grateful my day to day is still there to go back to.

Hey ho. Onwards we go.

Nov 05
0

On normalising death

By | #teammikaere | No Comments

There are a few NKH kids right now who are struggling. Who are at home and ill. Who are in hospital on the ward. Who are in hospice, on what the doctors say is towards the end of their lives. It’s hard, being in a virtual community, physically so far away knowing these families are hurting, that these kids are suffering.

There are also many children who have fought their fight with NKH, who have gained their angel wings and are no longer suffering. Their families are still grieving, though. Still hurting.

And I say all these things, but I don’t have words for how deep the suffering is. How truly intense and horrific it is. I don’t have words for that kind of anguish.

I struggle. I don’t have words and I think this is all coming out wrong – how do I talk about this? How do I talk about the tears and the emotions just below the surface? How I’m constantly grappling with how I feel, with grief. Is it a relief for all the children who have passed? Will it be a relief for the children who are suffering right now, considering how much pain and hurt there has been in their lives? Is there relief for their families? Will there one day be relief for us?

Because that’s the thing, I can’t comprehend Mikaere dying. I can’t. But he will, one day, because NKH is terminal.  I don’t want death to visit us. I don’t want death to visit any of the families that are waiting for it right now. I don’t want the curtain of grief to envelop any of our NKH families. I just don’t.

And I feel powerless to help. The families who children have passed, the families that are struggling.  I don’t feel I can bring comfort to them. I don’t know how to support them. I send messages to let them know we’re thinking of them (and I am, all day every day) but it feels… inconsequential. I feel powerless to help our little family, and the endless waiting and fear for the terminal end.

There have been a few times we’ve waited for the news. A handful of times we’ve sat, anxiously waiting for that call, to hear when another child gained their angel wings. We’d send love and thoughts and cry. We’d talk about organ failure and seizures and that respiratory arrest is more likely to happen before cardiac arrest. We talk about the dignified death bill, and slower than slow breathing rates. We’re normalising the lead up to death.

I hate that this kind of conversation is normal for us now. That we as parents fight so hard to keep our children happy and healthy, and that we’re powerless in the end to stop the pain and suffering that comes with NKH.

I hate that our days with our kids are tinged with the word terminal. That sometime in our future with Mikaere we’ll be in the same position. That we’ll, one day, be watching his organs fail and be witness to his pain and his suffering. To his death. Just like other NKH families are right now.

I’m heartbroken. I’m absolutely heartbroken.

I’m talking about death and dying today because November 2nd, was NKH Remembrance Day. I’m late by a few days, but I want to pause and remember our NKH kids.

I want remember Alexander, the sweetest little sausage there was. I want to to remember Kaleb, and his cheeky grin.

Gregory, and his brother Elijah who is missing him. Halle Mae. And Cathryn. Maynak. Siem.

There are actually many more children. There’s a list. A list of 124 children who have died from NKH whose names should be remembered. There’s a slide show, even. And I started reading the names… there are so many names. Too many names.

And I’m aware that these names, they’re just the ones in our NKH group. They’re just the ones we know about. Other languages, other countries… they have their own groups with children who are dying before their time. They also probably don’t include the families whose babies died before they could even find support in the NKH groups.

Too many names. Too many children.

I don’t want them to be forgotten. I want to remember them, I want their families to know I remember them. To know their names, and their faces. They made marks, they made a difference. They were loved.

I held my little guy a bit closer today while I remember the others. And I think about how all of those children were so loved like I love my little guy. So loved and cherished. NKH can suck it.

 

Oct 31
0

Running 31 Days in October

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Mick sits one desk across from Mikaere’s Grandad, and today marks the end of the unbelievable challenge he’s set himself. Mick ran every single day in October, on every single one of those 31 days. And he did it for #teamMikaere and NKH Research.

There’s something incredibly powerful about someone running for our son. Knowing Mick has been out every day, convincing himself out in all weathers for us – you guys. There is something so supportive, so genuinely heartfelt when your day to day is encouraging others to do hard, challenging things, to keep on keeping on.  From a recent post, he said “While getting out and doing this every day has been a challenge, it’s been great to have such variety – and of course when we think about why I’m doing it, the challenge I’ve given myself is nothing compared to the challenges others are forced to face every day. Hats off to #teamMikaere.”

The acknowledgement of our day to day, the support and the act – not just words or platitudes, but the physicality of running every day, committing to it, following through and fundraising an amazing amount – that has made a huge difference to how connected we feel. We feel seen. We feel heard. We feel like we’re not alone. We’re here with Kaikai, and we know that without fail, every day this month Mick has been out running for us. What a guy. Plus today, on his last run, he ran in fancy dress (!)

Mick has raised over £2k for NKH Research – a phenomenal amount of money. It works out to over £70 per run (blows your mind a bit, doesn’t it?)

I know we ask, repeatedly, over and over. But if ever there was a fundraiser to donate to, please donate to this one: justigiving.com/mick-holton

Thank you Mick. What an amazing month, what an amazing effort. We are genuinely appreciative of your support, and are glad you’re on #teamMikaere.

Oct 05
0

Please stop telling me how strong I am

By | #teammikaere | No Comments

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.