Tag

emotional pitfalls

Oct 09
0

On of course we ended up in hospital

By | #teammikaere | No Comments

I wish I hadn’t said the bit about a&e in that last post. I didn’t meant to put that out into the universe.

I called the patch team (they’re our out-of-hours nurse team, who are on call in those hours when no one else is available), just for some reassurance that we were doing the right thing and she immediately suggested we call an ambulance. Despite us keeping his O2 stats up in a good place, his heart rate is too high. His respiratory rate is too high. He’s working so hard to breathe.

So here I am, blue lights flashing, in an ambulance. I can’t figure it out. He’s got a cold, but his chest is clear. We saw the gp 6 days ago, the paediatrician 4 days ago,  and now today we are being blue lighted into hospital.

Why is he working so hard to breathe? Why why why?!

And then we’re down the rabbit hole. How do I prevent this from happening again? How do I take care of my boy? How do I do this?

(And then, if we’re getting really dark together, how do I manage if it turns out I can’t do anything, that I can’t help him breathe, that I can’t help his heart beat slower, that I can’t stop him from being ill).

Kai’s just vomited all over the ambulance. Fuck.

——-

After a few hours in the a&e, I’m in a showdown with the registrar. Bloods have been taken and don’t show anything of concern. The chest X-ray is clear. We’ve taken swabs cause clearly he has cold of some kind, but it will take a few days to grow those cultures.

The registrar wants to admit Mikaere for observation. I want to take him home. We have everything they have up on the ward, we have a night nurse tonight and he’s more at risk of catching something else on the ward than he is at home. Home is safer. It’s also only an 8 minute blue light ambulance away from the hospital.

I know I’ve won the stand off and he’s coming home when I ask what they would do here that we can’t do at home, and she doesn’t have an answer.  What would they do if he got worse? No answer. Depends on what the ‘worse’ is, apparently.

The registrar has gone to speak to the consultant. We’ll see. I might be be in a showdown with the consultant next. But I genuinely believe that the best place for him is home. That it’s safer than on the ward. I get the impression there aren’t that many parents who fight the authority of the registrar, but here I am.  Let’s hope the consultant on call either see’s common sense, or is too busy to want to cross words with me.

Update: We were discharged, with strict instructions to come back if things get worse. They gave us loose definitions of what ‘worse’ looks like, but really it’s just if he doesn’t improve, if his heart rate stays “too high”(but again, didn’t give a firm definition of what “too high” looks like and he can’t hold is O2 levels, we’ll go in again.  Our community nurse will come see him tomorrow, and the day after, and every day until it’s clear he’s on the mend. We’re going home! Thank fuck.

 

Oct 07
0

On an awful morning

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It’s just gone 5am, and Sam’s moved out into the lounge to sleep and I’m playing it fast and loose by moving Mikaere into our bed. He’s on o2, but despite it his heart rate is through the roof, his respiratory rate is ridiculous – he’s working hard to breathe.

There are tubes and wires everywhere, and Mikaere is frustrated at the mask on his face and keeps tangling his fingers in all the tubes.

I’m trying really hard to hold it together. But I hate this. I hate that my baby is struggling. I hate that we have to have monitors and alarms and tanks of o2 by our bedside. I hate that at this point I don’t know whether we’ll still be here in bed in the next hour or in a&e.

We all desperately need the sleep. Sam’s night ‘shift’ finished only three scant hours ago when he finally got to go to bed, and I’m run down and exhausted and poor kaikai, he needs the recovery time. Instead he’s thrashing about trying to get his mask off, and the stats monitor is kicking off because his heart rate is too high. (A typical heart rate for a sleeping toddler is between 80 – 120 beats per minute. The stat monitor reads 173 beats per minute right now. That’s me in the middle of a HIIT class!).

It’s just, Kai being ill is such a trial. And I hate this. I think frequently about how neurotypical parents get to go to sleep at night and not worry whether they’ll end up in the a&e before their alarm goes off. About how they’re not woken by stat monitors, heart racing as they try see if their baby is blue or not.

I hate the special needs life, you guys. It’s so royally awful, and my baby suffers and there’s no way to fix this

I read a book a while back, called ‘Was this the plan?’ about a special needs Mum and how she managed her through daughters life and again through her husbands trial with cancer. She says frequently that you can’t do anything about the cards you’re dealt, but you can decide how you play them. BS, is what I think. There’s no good way to play these cards. There is no way to accept the unacceptable. There is no way I’m going to be okay with my son living a life of pain and suffering. With my baby living a life less than what everyone else expects and enjoys.

And if I’m being honest, that entire book was a factual recount of an awful series of events, pain, grief and death. What was missing was any kind of emotional accounting. That’s what would have been helpful to me. How to manage these roiling emotions when life is one emergency after the next, when you don’t have any emotional capacity left and you’re in the dark place.

Because that’s what I want to know. How do I survive this grief, when I don’t even know whether we’re all going to get through this morning?

Oct 04
0

On Going to Nursery

By | #teammikaere | One Comment

As I write this, we’ve just come out of September. There were many back to school or first day photos in September. So so many.
We were also gearing up for a first day at nursery, possibly by the end of October. It was broached by our portage play therapist, knowing how I felt about being separated from Mikaere (which is no thank you never), and that at five, he was going to have to go to school (by law).

Knowing that it would take a long time for me to feel comfortable with Mikaere going somewhere outside my care, and into the care of strangers (especially when he’s on palliative care with a terminal disorder and every single day is precious), we went very very slowly.

Last year we visited schools. We talked about what some basic goals might look like, and what we’d be comfortable with. And then we went to the council and said, yes please. Please find us a place at this Lovely School here. That happened across months and months and months. It was very slow, and very gradual. Plenty of time for my mama heart to get accustomed to the idea of sending my baby to school.

Last week I hosted a group of professionals into my lounge where they presented an offer of placement: Five days a week, three hours a day between 12 – 3pm. His entire therapy caseload would be transferred to the school and how lovely was that?

Not lovely. Not lovely at all. I was shocked and made it clear that this package would not work for us for several reasons:

  • Mikaere is on a feed between 12pm and 2pm. That’s two hours where he is in a chair, relatively upright and still, else vomits.
    He typically sleeps from 2pm – 4pm, or has down time. He’s not typically very active in this time.
  • Five days a week is too much. He’s very easily over stimulated, and without lots of down time to compensate, he tires quickly and has seizures. Obviously we want to avoid that.
  • I’m not comfortable having his therapy transferred to school when I’m not there to oversee it. So much of what we do is lead by us, by me, because Mikaere’s well-being is so fluid. Seizures steal so much of his skill, so we’re can’t build on what he’s learnt week to week. One week he has full control of his limbs and his rolling. The next he’s floppy and can’t bend his elbow. The idea of not being there and things being missed without me to advocate for him (like I do now) is inconceivable. What’s more, if he’s meant to be having all this therapy when he’s on a feed or sleeping, he’ll never get the therapy he needs.

So no. It was not lovely, and I felt like this package had been designed by someone who did not know Mikaere, or his medical needs, and did not care. When I expressed all of this, it became clear it wasn’t the school setting it up, it was a council led, one size fits all special needs package. Have you ever heard anything so ridiculous – as if you could bundle the entire spectrum of special needs toddlers into one package. A package which does not suit Mikaere or me.

I was devastated you guys. Because right then my choices are put my son in a situation that I know will not work well and cause harm, or not have him go to nursery altogether and deprive him of lovely social interactions. That’s hard.

So I did what I always do when I’m faced with two unacceptable choices, which is accept neither and escalate. I asked for a few months leeway to review, and I wanted the name of the person at the council who works with Lovely School to arrange the packages so I could get one that works for us.

I think they were unprepared for me to do that. But you guys, I’m so tired of fighting.

I feel like I’m fighting every corner, for more for better for Mikaere. There is no part of his care that just works for him, no service that ‘just works’ like it’s meant to to meet his needs. (Just as a side note: I’m still trying to manage home visits from our gp, and his neurodisability service is in severe crisis to the point where they can’t offer prescriptions for medications he needs to keep him out of a coma. I’m fighting for the very basics of his medical care, so I’m not exaggerating when I say there isn’t a single part of his care that isn’t being fought for).

I’m so tired. The idea of gearing up for another fight against another immovable entity, another faceless group who doesn’t acknowledge my capability, my knowledge or expertise, who sees me as just another ‘hysterical mum’ – it’s exhausting and I haven’t even started yet. But I will. I will put my head down and provide paperwork and research and requirements and laws. I will escalate higher and higher up the ranks until it’s acknowledged that a one size fits all package is not appropriate for all children. That it’s not appropriate for my son, and that is unacceptable.

I will fight this fight, this extra fight in this extra corner, because I love my son, and he deserves the very best quality life I can wrangle for him.

So, off we go. Battle armour on. I can do this.

Aug 16
0

On the vomiting & the PH Study

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Oh the vomiting. I feel like it’s one of the invisible parts of our life, but Mikaere vomits EVERY DAY. Everyday the gagging, and the vomit and the changing and washing and comforting.

We carry towels around with us (most which have ever so slightly off colour splotches). We have a change of clothes for him, and for us. Vomit and the discomfort of vomiting is our day to day, and has been since February 2018.

Can we just take a minute and talk about how awful that is? How uncomfortable for Mikaere, how sad and smelly and gross and just, awful?

How happy would you be, if you vomited everyday? Tasting the bile, feeling it rise up the back of your throat? Knowing that day after day you wouldn’t be able to keep anything down? And no choice but the vomit, not able to communicate that you feels nauseous, not able to move your body into a more comfortable position.

How is that acceptable? How is that quality of life?

It’s not. No one seems as upset about it as I am.  It’s taken a year and half for anyone to investigate. A year and half of me speaking about it with every single medical professional on our team, insisting that this is not okay, asking for help, asking what else we can do, asking for more for better.

Then our gastro follow up for the gastrostony that we had in Feb 2018 was set for April 2020. Because the gastro Service at our local hospital is chronically underfunded and there is no consultant to see us.

This week we finally, finally had a ph study. It’s the very first step in understanding how much vomiting/reflux is happening. It’s only for 24 hours and requires a prob is put down Kai’s nose (and an X-ray to confirm correct placement).

It’s frustrating. We already know he’s vomiting, we already know he has reflux, and we know this because we take detailed logs of everything Kai does. I’m not sure whether they think I’m a hysterical mama bear whose making it up, or whether my data is just inaccurate (or are they just doing their due diligence?) but regardless, a step has been taken. Something has happened, and I’m hopeful that that something results in a review which will then kick off a bigger investigation.

My fear is that there is no reason. Or the reason is something stupid like the surgeon hitched the gastrostomy too high.

We’ll see. I’m grateful something has happened though, even if that something was a redundant waste of time. If it means someone is looking at its data and recommending a review, it will be worth it.

 

Jun 19
0

I don’t know how to accept the unacceptable

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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.

Jun 14
0

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.

Jun 10
0

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.

Jun 07
0

Drinking shouldn’t be a Coping and Resilience Strategy

By | #teammikaere | One Comment

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.

May 24
1

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.

May 20
0

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.