Tag

emotional pitfalls

May 16
1

On getting fitted for a wheelchair

By | #teammikaere | No Comments

When you think of a wheelchair, typically you think of a seat with giant wheels, where you self propel yourself forward. We see them on tv, in movies, we see them in hospitals, we see them on the street. That’s what I thought of when we first got assessed for special seating. A lovely lady named Mary came to make sure Mikaere’s buggy was supporting his body enough. Turns out Kai is very very tall and is swiftly outgrowing his buggy. Kai’s not even two yet and when he’s all strapped in his head brushes the top of the buggy. That’s not the main problem. The main problem is he’s very long and there’s no lateral support for my low tone baby. You can tell when he’s not strapped in, because he slumps forward, and kind of rolls to one side and his behind is on the bar.  Womp.

So. We took our very long baby and made a visit to the Wheelchair Adaptive Seating services at our local hospital.

I’m not ready. I’m not ready for a wheelchair. I feel like we only just got that magical moment in supermarkets where everyone peers in and delights at how beautiful Mikaere is and THEY DON’T KNOW Kai has this terminal and rubbish metabolic disorder. For a few moments in the supermarket, I get to feel like a ‘typical’ parent, rather than a special needs one. I enjoy the ignorance of strangers – it’s all so refreshing. No odd stares, no comments, no pity or platitudes. It’s beautiful. Strangers love on my baby and tell me he’s beautiful. It’s the only moment of what I imagine neurotypical normality to feel like.

We’ll lose that with a wheelchair. And I know,  I know the wheelchair designers try. They take a pram base and put some supportive seating in, instead of the pram seat. They give it a giant cute canopy covered in dots to try disguise it, but then they stick some medical paraphernalia on the frame. Here’s a structure for the oxygen tank, the suction machine goes here, and if he needs a vent then that would bolt on here. What happened at the end was less pram and more medicalised everything.

Just blaaaaaaaah. I’m not ready for a wheelchair. I’m just NOT.

There’s also the small matter that our current buggy (the Bob Revolution Pro) is an epic epic buggy. It’s the buggies of all buggies. I spent weeks researching when I was pregnant and we were so lucky to get it. It’s designed for running and it has suspension and it’s got three wheels. It’s perfect for all sorts of walks. Walking along the river in the dirt tracks, or mud if it’s muddy. Country walks when we’re out visiting. Across fields. Running when I want to go for a run. The wheels come off if we’ve packed the boot too full. It’s just the best buggy. It’s the best of all the buggies.  By comparison the pram base of the wheelchair is good for inside and pavements. It’s no Bob. Not even close.

While I know we’ll have to switch at some point, I know the second we do our freedom for where we can take Mikaere will be halved. Just. Blah. Blah to this. Blah to more medical crap and less freedom. But it’s not the jobs of the wheelchair engineer ladies to deal with my emotions around “upgrading” my baby from a typical buggy to a wheelchair, so I plastered a smile on my face and let them adjust the chair around Mikaere.

The chair pictured isn’t the right size for Mikaere, it was used for measurement purposes. We haven’t ordered his one yet. I’m putting it off. There is still half an inch of space between Kai’s head and the top of the buggy and while he still fits I’m going to cling to the pram we have. Hey ho. I’ll keep you posted on the new wheelchair as things develop.

May 09
2

On the Carers Benefit

By | #teammikaere | No Comments

Before Mikaere I was a UX Designer. I worked as a contractor and I earned a pretty penny (the going rate for a senior UX contractor in London is about £400 – £550 a day). I had a healthy income, a healthy savings account and a fab disposable income. I wanted for nothing.

But because Mikaere has NKH and requires so much care, and our time is precious, there is no way I could leave him with someone else. So I said goodbye to my job and the pay check that came with it and settled in to being a special needs Mum.

Here’s the thing though – the carer’s benefit is £62.70 a week. If was being facetious, I’d say it was a daily rate of £12.54, if you assume that it’s for a working week. It’s not, clearly. By comparison, a carer (not even a nurse, just a carer) is paid about £8.50 an hour. Across a ten hour shift, that’s a day rate of £85.

I feel like the government doesn’t appreciate the work, time and effort special needs carers take on. I don’t think they appreciate the cost that comes with special needs. We’ve had a significant drop in household income, but we’re still expected to pay for all the special needs extras. Supplements, syringes, helmets, extra therapy sessions, compression suits, hospital parking, supplements. The list of special needs requirements is long.

We’re only just beginning to look at more equipment that may or may not be covered on the NHS. Supportive car seating, wheelchairs. And I know the world of hoists, fancy wet room equipment, safe sleeping systems and wheelchair accessible vehicles are coming.

It’s frustrating to know all of this is in our future and not know how we’re going to pay for it all. On top of that, I wonder how special needs single parents manage. Because bluntly, without Sam I couldn’t afford to care for Mikaere.

I know this is a bit of a whinge post, but I miss working. I miss earning an income and being a financially independent earner. I know giving up my job to care for Mikaere was the best decision for our little family (without a doubt) and I’d choose it again in a heartbeat, but that doesn’t mean I don’t miss working, because I do. I miss earning a pretty wage, and the financial ease that bought. I miss being treated like a competent adult (rather than “just” a mum who couldn’t possibly know more about my child’s condition than a doctor who keeps confusing it with Nonketotic Hyperglycaemia, a disorder about blood sugars).

I miss using my brain. Working on things outside the mundane of meds and sterilising and waiting on hold and arguing with the people who book medical appointments. Discussing emergency end of life care plans (read: if Mikaere has an ‘acute event’ – at which point do we stop providing care and let him go? Because we did that today). I’m over carefully negotiating his care with his team. (Sidenote: how many neurotypical parents have to negotiate what’s best for their children with people outside their family on a regular basis??).

I miss working and I’m jealous of neurotypical parents who get to choose what works best for them, working or not working.

And then I think about what’s best for Mikaere, and it’s me. I’m best for Mikaere. So I brush off the working angst, and endeavour to work more on a side hustle or two, and settle in to special needs parenting.

But it irks. Right now it irks that the conservative government doesn’t see the value in supporting families like ours to a point where we could live comfortably, without fear, without having to pick and choose which therapies we can afford. We’re expected to drop a wage and pick up additional the costs of special needs parenting. I’m frustrated benefits are being cut, the NHS is underfunded and social support isn’t a strong suit of the Tories.

I’m frustrated that apparently carers like me are meant to survive on £12.54 a day. I don’t expect to get paid to parent my kid, but it when I have to give up my job, do more than a typical carer does and cover the increased costs of special needs – that irks. £12.54 a day. £62.70 a week. £3260.40 a year. Less the National living wage. It’s ridiculous.

Apr 23
1

On the Boston Conference

By | #teammikaere | No Comments

I don’t know where to begin.  I left Sam and Mikaere early on a Wednesday morning and caught a taxi the airpot. I left in a rush, which made the leaving part a twinge easier (because leaving your sweet, medically fragile child is never going to be easy, even in the best of times).

Then, before I knew it, I was in a cute little church hall with facebook come to life. I can’t even begin to express how amazing it’s been to meet the people I’ve been talking to online for the past year. To meet Tarah and Eric, Drake’s Parents. Maddison and Dalton, Kanes Parents. To meet little baby Willow, Jade and Larry, Evelyn (Bella’s Mom) and Trine with Karine and Robin with the most beautifully sweet Saige. To finally finally meet Kristin, the mighty force behind the NKH Crusaders and her son Thomas. To be reunited with Emma and Paul and Joe, the famous face behind Joseph’s Goal.

I get these will just be a long list of names for you. But I’ve been reading these names daily for the last 17 months. I’ve been sending messages and liking posts and commenting on photos and asking advice. I’ve been sharing their grief and cheering their joys and until this week, I’ve only been privy to their lives through a screen. Really. In my head I was still associating people with their full names and avatars, like you see on Facebook.

There was a lot of love at this conference, a lot of kindness and a lot of people who GET it. Who live a similar life a million miles from where we do.  To be in the same room? To cuddle sweet Kane and to hold Willow and to sit with Joe? You guys. It was like my heart exploded – these kids were just like Mikaere. They were JUST LIKE HIM – I was in a room with my tribe. I can’t even begin to explain what an experience that was.

To leave my little guy with Sam and fly across an ocean was tough, but what I didn’t understand was that I was going to be with what essentially is my NKH family. It sounds mushy af but it was wonderful. To be with people who understood seizures and blowing up noses and were happy to talk out anti-epileptics and b-vitamins and how there has to be more going on in the folate system than we know about. It was like being thirsty for company and arriving at an oasis. And I drank my fill, believe you me. So many beautiful people, so many beautiful NKH babies. It was AMAZING.

Dr Van Hove and Dr Halder were also there  to share where they are at with their research. I was very interested to hear the directions Dr Van Hove was exploring. Dr Halder was less straight forward with her work – there was a lot of holes in her talk and she’s hasn’t made as much progress as either Dr Nick Greene or Dr Van Hove, but it sounds like she has a lot of support and financial backing which is positive.

Essentially, Van Hove is looking at Chaperone Therapy, which is to say he’s looking for an existing FDA approved drug that will be able to help stabilise the proteins our kids make, allowing them to part-process glycine. This may even allow them to take a step down on the severity scale, drastically improving quality of life for our children. He’s also looking at the Serine hydroxymethyltranferase system, which is a system that keeps serine and glycine in equilibrium.

It was a very exciting conference, I feel like there was a lot of moving parts that came together in a positive way, particularly in terms of the charities and the researchers, and how we as #teamMikaere fit in, and how we can support the bigger players.

Unfortunately, the main theme that shone through was funding, and the lack of it. It costs approximately £200k a year to run a small lab at bare bones. What’s more, between the three researchers funds from the usual family charities are now diluted. Its difficult, because I know NKH families are already stretched, and have already reached out to their social circles for donations.

Funding, it’s always going to be the bottleneck between us and a cure. It just kept coming up again and again, how much funding is required and how little there is – some of our researchers are seriously struggling to stay afloat, which really was difficult to hear.

When the conference drew to a close I was sad to say goodbye. We’d only been together for three days but a lot happened. There was a lot going on and I’m grateful we got the time we did. What a whirlwind trip.

I know there will a UK Conference later this year and I am beside myself excited to be at that one too. It’s important, hey? This time with people who get it. I’m glad I went. Being away from Mikaere and Sam was rubbish, but I’m still glad I went.

From Left to Right: Kari and Maddison (Kane’s Grandma/Mum), Me, Jade (Willow’s Mum), Emma (From Joseph’s Goal, Joe’s Mum) and Evelyn (Bella’s Mum)

 

Dalton (Kane’s Dad) with Kane and Joe, and cuddles with Kane (honestly, the sweetest little guy!)

Me, Tarah (From the Drake Rayden Foundation – Drake’s Mum) and Emma (From Joseph’s Goal, Joe’s Mum)

 

Dr Van Hove and Dr Halder presenting at the conference.

Mar 26
2

On between the MRI and the Gastro

By | #teammikaere | No Comments

We saw him briefly. So briefly. We knew they were coming because we heard them readying him for transport. I was already standing to the side when the doors burst open. Our Tuesday carer, Wai, beside me.

He looked so little. He had a vent (horrid and wonderful life saving things that they are) and his eyes were taped shut. Two cannulas were in his feet.  Irritating, because we’d put numbing cream on his hands and inner elbows to help with the pain in going in.  His hands and arms were covered in red puncture marks where they’d tried and failed to get a cannula in. (Turns out the numbing cream is also a vascular constrictor.. fail).

He looked so little. So vulnerable.

Mikaere was being moved from the MRI clinic (an adult clinic which they’d commandeered for him because it was closer to the paediatric OR) up to theatre.

We rode up the elevator together and I gently held his tiny little hand. More for my comfort than his.

We stopped in the corridor near the OR – no parents past this point. Only patients and doctors. Saying goodbye a second time was equally rubbish. Still, I was grateful I got a glimpse of Mikaere. That so far he was doing okay.

We went down the hall to the Paedatric Intensive Care. We knew he’d be going there after and were told we could leave our stuff in the parent room.

It’s a tricky place, fraught with familiarity and grief from when we were there last year. I got flashbacks of Christmas and New Years. The microwave dinners we’d had on our knees, wolfing down food so we could go back into PICU. The tears, the quick power naps, the unbearable waiting that happened when we had visitors and it wasn’t my turn to be with Kai (it’s only two visitors to a bed, so turn taking is a thing). Mostly I remembered the fear. Of not knowing what was going to happen, of Mikaere sinking into a worse and worse hole. Of everything seeming so overwhelming and horrid.

I’m glad we weren’t under the same circumstances this time. Oh waiting. I willed time to pass quickly.

Mar 16
0

On not having a paediatrician because the NHS is underfunded

By | #teammikaere | No Comments

Everyone knows Mikaere is medically fragile. I’ve talked before about how large our medical team is and how we have an appointment of some kind every day of the week. Our life is a series of appointments and therapy and special needs groups. We go to all these things because it helps Mikaere, it keeps him safe, minimises risks, teaches him skills and relaxes him and puts all sorts of services in place for when things go belly up and he needs them. It’s a full time job, organising and ferrying him about, being present, understanding the goals and raising concerns and following up.

Of all these services, our paediatrician is the most utalised. He’s the person who knows Kai the best, who is our first port of call. He orders our meds and the bloods and all the checks. He’s our go-to person when anything is wrong, if the meds are out or there are more seizures or we need something. He orders all the referrals, the X-rays to check for hip formation and scoliosis. The orthotic referral for the suit, the physio referrals, the gastro surgery referrals. He pulls checks on all the difference services, speech and language, physio, OT, nutrition. He’s the person we work with, the person we make a plan with and who helps us works the system to make it happen.

We’re lucky that our paediatrician is covered on the NHS, as are most of the services Mikaere uses. For those not in the UK, the NHS stands for the National Health Service. It means that the basics of our healthcare system are free at the point of care. Meaning, we’re lucky that for the bulk of Mikaere’s care, it’s covered by the tax we pay.

Here’s the thing though. The NHS is chronically underfunded. It may not look like it from the outside, but it is.

Mikaere’s paediatrician was a locum, which means he was temporary while they found a permanent person to take that role. Which is fine, we knew this and accepted it. However, a month or two before end of the financial year the paediatric locums were let go as a cost saving measure. And – get this – there was a gap in care. There was a gap where there was NO ONE to pick up the case load, where Mikaere DID NOT have a paediatrician – our first port of call, someone to prescribe his many meds or chase anything (like that gastro we’re waiting for). We didn’t know where to go for all the things Mikaere needed.

My small, medically fragile and vulnerable son did not have a paediatrician because the hospital trust was told it needed to save some money.

As you can imagine, I raised an absolute stink about it. I emailed the Medical Director, Andrew Rhodes. I also emailed the Head of Child Services, James Gavin. I made an official complaint to the hospital, wherein they couldn’t tell me why officially why there was a gap in care. I emailed my MP, Justine Greening. I also emailed Jeremy Hunt (https://www.jeremyhunt.org/contact – and if you can, I’d ask that you email him too, and tell him chronically underfunding the NHS is having a crippling affect on the most vulnerable of our population). I’ve complained to CQC and I’m in the process of a complaint with our local ombudsman.

And nothing happened, nothing changed. I got a few platitudes and apologies but not much more. And that’s because the problem is bigger than the trust that runs our local hospital and provides basic care for Kai.

Underfunding at the NHS is happening and it’s affecting my family in real and tangible ways – for the worst.

And I know. I know we’re lucky to live in a country that covers care for us, and we’re grateful for that. Except that we also live in a system where we couldn’t afford care otherwise. We couldn’t afford to pay for private care. I had to give up my (wonderfully well paid) job to care for Mikaere, and point blank, if it came to it, we couldn’t afford care for Mikaere outside the NHS.  Just to be really clear, we are not talking about luxury care for Mikaere. We’re talking the basics of what he needs to be safe and to live.

We rely on the NHS for Kai’s care, and it has a direct affect on his quality of life.

NHS underfunding is happening and it terrifies me.

Feb 20
0

On the standing frame

By | #teammikaere | No Comments

It turns out your hip sockets aren’t fully formed at birth. They’re flat and somewhere between 8 and 10 months, when babies first start standing, they start weight bearing on their beautifully chubby little legs. The more weight they bear through their legs, slowly but surely their hips begin to form sockets.

That’s all well and good, except that Mikaere can’t hold up his own head, let alone stand and bear weight.

So finally, after months of waiting, we got a stander. A beautifully green, giant piece of plastic special needs equipment (if I was upset about the chair, it’s got nothing on the stander. At least the chair is recognisable as a chair. The stander is more like a kid friendly Hannibal Lecter restraint. But without the straight jacket. My lounge is being overtaken with equipment with neon ‘special needs household’ signs all over it. This is our life now, my emotions and grief are scrambling to get on board, but hey ho. Moving on).

So the stander was fitted and now, for a minutes a day – Mikaere stands.

My kid? He’s tall. Super super TALL. I didn’t know that. I knew he was long, but I’ve never seen him upright. And while he’s lying down, sure, long. But he’s standing now. And he stands TALL. It’s an absolute delight to see him upright, he looks older somehow.

It’s early days yet, but we’re trying. If he’s in the mood he’ll tolerate it well. If he’s not in the mood he really really won’t (I don’t blame him, being strapped into a thing and not being able to move anything but your arms must be tough).

Here’s the thing though, if Mikaere doesn’t spend time in the stander, he’ll never form hip sockets. If he doesn’t form hip sockets he’ll be at risk of hip dysplasia (read: frequent dislocation) and osteoarthritis (read: pain and stiffness).

So, standing. It’s a preventative thing we’re doing.

At this point it’s only minutes a day, but eventually it’ll grow up to an hour or so, we’ll make it happen.

The things we do, hey?

Jan 31
0

On Mikaere’s path at Mikaere’s pace

By | #teammikaere | No Comments

It’s been a while since I’ve seen our friends with babies. My NCT friends have all gone back to work and their babies are all in nursery or with nannies. Our other friends with babies – they’re in the process of going back to work too. Which means that weeknight visits are tricky, because they eat into family time. As do weekends. Our catch ups are now scheduled weeks, months in advance. Gone are the casual, spontaneous semi-regular catch ups.

That’s tough. I miss them.  Partly because they’re wonderful people, but partly because without them and their beautiful babies I forget.

When it’s just us, we’re in the Mikaere bubble. We can only see his path that he’s wandering down at his own pace. Smiles are frequent and his vision is getting better and his tone is improving. All positive positive things. At Mikaere pace this is all positively break-neck full speed ahead.

But then I see a child Mikaere’s age and their developmental milestones and I’m heartbroken. It’s hard not to compare, despite my attempts not to. But it’s hard not to grieve those what-could-have-beens with Mikaere. He’s not doing any of the things they are. He’s worlds away.

There was this little child the other day – in a café. Younger than Mikaere. And this child was so different – handing things back to her parents, shaking her head, pushing things away for no, smiles for yes. Standing on tip toes to peer over the back of a couch. Curious, and alert and aware. It was like Mikaere’s peers took several giant leaps forward while I wasn’t watching and I was blindsided.  The grief is overwhelming.

The other thing is that with Mikaere’s current developmental level – it’s easier to manage emotionally when he was little and tiny. Babies don’t typically move about anyway.  But as a long legged, skinny boy, I can see his body is made for running and moving and going. And Mikaere wants to wriggle and move. But he physically can’t do that. Not yet. Possibly not ever. And the bigger he gets the more difficult it is.

This grief, I’m beginning to see it’s never going to go away. It’s cyclic, ever present.

And it sounds selfish, but with seeing our NCT and baby friends regularly – I couldn’t be blindsided. We were constantly catching up, so small developmental leaps were easier to manage. It’s just how it was. It’s the space and the distance that make it difficult. The surprise.

I shake it off and love on my kid, knowing his path is his own and willing my mushy insides to get on board with the unconventional path we’re walking down.

Hey ho. As I cheer Mikaere on, I’m pretty sure I’ll always be feeling this grief for him.

Dec 15
1

On the Christmas Carol and Triggers

By | #teammikaere | No Comments

I didn’t know the story of The Christmas Carol. When a good friend suggested we go out I jumped at the chance. The last month has been *so hard*  with the isolation. When Kai is poorly and the weather is cold we don’t go out. We cancel all the appointments and hunker in till he’s better. But what that means is that I don’t go out, either. I think it was two weeks before I left the flat, and I was feeling it. The lack of perspective was making me stir-crazy. So yes, I was very very keen to go out. Because we had no firm plans, I googled ‘Christmassy’ and ‘tonight in London’ and what came up was The Christmas Carol at the Old Vic, so off we went.

I didn’t know the story of The Christmas Carol. If I had I wouldn’t have suggested it.  But instead there we were, I was delighted to be out, delighted to have a cup of mulled wine and even more delighted when one or two of the actors offered us mini mince pies. Look at this face – is not one that is delighted through and through?

The show had set up a 360 audience, and as such we were sat on the stage, eye level with the actors, facing the audience. It was amazing. The lighting was beautiful, the orchestra was fab, the three ‘buskers’ were fun (an accordion, cello and violin performing Christmas songs) and the set was quite clever.  Even better, I thought the actors were amazing – the lead, Mr Ebenezer Scrooge was Rhys Ifans, perhaps better known as the crazy flatmate of Hugh Grants in Nottinghill (I much preferred him as Scrooge).

It was all going well and I was fully engrossed in the show… right up until the Ghost of Christmas Present showed Tiny Tim. Tiny Tim had stopped breathing, and his mother walked away to wait anxiously for the Dr at door, while his father pleaded with him to breathe. That’s not what you do, I thought. When Kai doesn’t breathe I do plead and beg him to, but I also reposition him, and blow up his nose, and if he breath holds for long enough, I do CPR.

Unless it’s like that time he turned puce, and then blue. I was so scared, so scared that the inevitable had finally come, my fear was overwhelming. I was completely helpless, and Kai was such an unnatural shade and there wasn’t anything I could do. And just like that, while I watched an actor react in a way only someone who has never experienced it could, I was transported back to intensive care with the very real fear of watching my baby die right before me.

Before I knew it I was sobbing. But silently sobbing, very aware this was probably meant to be a poignant point of the story, but uncontrollably sobbing all the same. I had to stop watching. I covered my eyes with my hands, tears dripping down my face onto my shirt. When the lights came up for the interval my friend seemed a bit shocked to find me in a complete state.

It took me a long time to regain composure, and all the while my friend tried to explain that the story had a happy ending, I couldn’t get past what was clearly a trigger for my grief. I agreed to stay only if there was no more Tiny Tim breathing dramas, deaths or funerals. Needless to say, we left at the interval.

As we left, I offered our chairs to two ladies who had come down to sit with their friend, who was sat next to me. They’d got last minute tickets and were all sitting in different places. “You’re not coming back?” one of them asked, a bit shocked. I understand that:it was beautifully done show. I don’t think they were prepared for emotionally honest me, who, through my tears said: “My son is terminal, and this hits too close to home.”  My friend ushered me out after that.

He took me for fish tacos to make me feel better (which they did). And then we went to Claridge’s, admired their upside-down Christmas trees and was served rich chocolate desserts by young men in white jackets. It was very swish and decadent.  The only blight was it was clear that while dessert at Claridge’s was a treat for us, for some it was their clearly their local while in London. I couldn’t help but feel that the collective wealth in the dining room at that point could easily have paid for a cure for Kai. But hey ho.

It was an odd night. I didn’t realise my grief sat so close to the surface, that I’d be triggered by something like Tiny Tim not breathing. I guess this is one of those things now. Special needs, medically fragile, rare and terminal metabolic disorder parenting.

If you don’t have a terminal child, go see the Christmas Carol at the Old Vic. It really was lovely.