If you’ve read any of my other blogs, firstly thank you.

I am always genuinely amazed when I get messages saying “your blog really resonated with me” etc.

Apart from the fact I find this cathartic, I love talking about my kids.

But, Jacob, this one is all for you (albeit future you!).

I hope one day when you’re old enough you will read this (I’ll probably bribe you with chocolate but whatever works eh?!) and understand just how much you mean to me and of course your entire family.

Where do I begin?

You, your brother and sister were our little miracle triplet “ICSI pixies”, meaning a team of incredible doctors and nurses helped us to have you.

You were loved, wanted and treasured before you were even in my tummy.

I remember so vividly telling friends and family that we were expecting triplets and the absolute joy we felt that you were coming into our lives at last.

Then we found out you had spina bifida.

We hurt, I want to be clear about that.

But sweetheart, we hurt for you.

As someone with Multiple Sclerosis and a nurse, I knew the challenges you may face with your condition and no parent wants that for their child.

In saying that, spina bifida messed with the wrong family!

You have a team behind you who love you so deeply they’ll never be able to tell you (as they love Ben and Chloe too!).

One of the first things people told us when we started to share this difficult news was “I’ll be right there the whole time”.

That’s proved true for so many people.

You have a family who love you for exactly who you are, especially your brother and sister.

There is a saying I tell you even now when you are only six that says “If you want to know how to treat a child with special needs, watch their siblings.” It is so true.

Ben and Chloe accept you fully for exactly who you are because that’s who we love, flaws and all.

You see we are all flawed, it is just unique to each person.

For example, MS aside, Daddy says I can be a bit “nit picky” with details…I’ll leave you to work out whether he is right or not! (Remember that chocolate Jacob…)

Despite that, there are people who I thought would be with us for the long haul who have left, for varying reasons.

You see, having a child with additional needs (as part of a set of triplets!) when you yourself have a disability yourself doesn’t exactly come with a guide.

I did a lot of things wrong.

I am sorry for that because in losing those friends I also lost their children, who inevitably would have been friends for you.

Some people couldn’t handle the level of pain I felt when you were going through prolonged struggles and wanted me to be something I wasn’t.

We lost them too.

I am sorry Jacob, I wish I could offer you a whole army of ready made friends because that is exactly what you deserve.

However, we found support in new people.

As I write this we are in lockdown three during the covid-19 pandemic that I am sure you will read all about someday and vaguely remember the days mummy stumbled through homeschooling!

My cousins and I have got back in touch and are using an app called “Marco Polo” which allows us to send video messages to each other.

They are a great support to me which in turn allows me to be a better Mummy for you.

I also have a dear friend who has been there through thick and thin and now has a beautiful second born daughter who I am sure you will grow up to play with whenever all the restrictions are lifted.

There are also the friends we have made through spina bifida, you’ll know who I mean in a lovely little girl who is very close to your age and has similar health challenges.

You are about to start a new school, but are leaving behind a literal classroom full of friends who will miss you so much.

My own Mum loves me as I love you (and I love her right back in return, she is incredible).

She taught me how to love, and it is because of her I am able to be the Mummy I am to you.

I need more help than I’d like to do things and I know you even currently feel the same and will face that all your life.

Jacob please listen to this especially…needing help is NOT a weakness and it takes great strength to know how and when to ask for help.

I hope I teach you that so that you can live your best life.

I love you so much little man and want to thank you for the journey you are taking me on.

I’d take your pain away in a second but I couldn’t imagine changing anything else about you.

To me, you are my perfect little boy.

Thank you for being exactly who you are sweetheart, I love you to the moon and back, as well as all the stars in the sky.

Love always, Mummy xxx

When we found out during our fetal abnormality scan that one of our triplets had spina bifida…I never thought I’d feel pain like it again.

Until recently.

Jacob has been through so much since being diagnosed with epilepsy at the very end of 2018.

His seizures are multifocal meaning they originate in several places all over his brain.

He can have a variety of symptoms, but summer 2020 was incredibly difficult for reasons that had nothing to do with covid-19.

Jacob was admitted to hospital multiple times and ended up needing to have shunt revisions for his hydrocephalus.

In all honesty, he’s never recovered from the experiences he had that summer into autumn.

It’s left him with emotional and physical damage that is showing in every aspect of his life.

Our little boy has changed.

It isn’t that “normal” growing up and missing them as a younger age twinge all parents go through, but an almighty sense of “where did he go?” that led to literally half a year of tests, appointments, talking to charities, talking to other parents, crying, asking “why him?” before finally being told he has brain damage.

All the seizures, surgeries and missed school have added up and caused trauma in a brain that is already waging war daily against the effects of hydrocephalus and epilepsy.

What did this mean?

In blunt terms, he has regressed socially, emotionally, behaviourally and educationally.

He was in a mainstream school but it became painfully apparent that he wasn’t coping.

He was experiencing non-epileptic seizures (NES) multiple times a day in school because he was so anxious and unable to cope with the pace of a p2 classroom of children who’d no obvious physical or educational needs.

So his medical team asked for educational psychology to assess him and it was a pretty damning report.

To see what we’d worried about written in black and white was so hurtful, yet also strangely liberating.

The decision was made that Jacob needed to move to a specialist school.

We’d had support from a particular school since he was beginning preschool so I was naturally drawn there.

We were incredibly lucky that when I rang the school, they’d a place available in p2, or as they called it, the “Toucans”!

It all seemed to move very quickly after his annual review with his mainstream school and I shed a lot of tears over the whole thing.

In saying that, it has somehow always felt right.

As a trained learning disability nurse it feels painfully ironic that my child has brain damage that presents as a learning disability, although it’s meant I knew exactly what I wanted a specialist school to offer him.

I was adamant that it didn’t become “common knowledge” until we’d told Jacob, Ben and Chloe.

I got a lot of advice on how to do this but it didn’t make it any easier.

Despite opening with “we have some amazing news, (school name) want YOU to join them! How lucky are you!” they all sobbed their hearts out.

I think that was one of the hardest moments, having to hold it together for them when really I felt the same way.

He did really like the idea of being called a “Toucan”, so I got him a little keyring of one that he is now nursing daily and has called “Peckers”.

I have also bought a big Toucan that I’m trying to get personalised to give to him on his first day that is fast approaching!

We’ve reached a point now where we are excited about the opportunity Jacob has been given to join this dynamic school.

He will be surrounded by pupils who go through similar struggles to him which we hope will help him cope emotionally with everything.

When I spoke to the school, none of his medical needs seemed to phase them which filled me with such confidence.

He isn’t going to be the “different one” any more which I think he desperately needs.

So our little Toucan is set to begin his new adventure in the coming weeks and we just know he is going to absolutely knock everyone’s socks off!

I’ve always said all I ever want for my children is for them to be happy and I really hope this move helps Jacob get back to his happy, bubbly self! 

“We don’t know why, I’m sorry”. Have you ever heard these words, or similar?

Our son had the most horrific time in 2020.

He had four surgeries (one planned, three emergencies), several trips to A&E, multiple admissions to hospital, numerous brain CT’s and countless other tests.

He has spina bifida, hydrocephalus and epilepsy.

As part of these conditions, he has a VP shunt which controls his hydrocephalus although it always has the potential to malfunction.

His three emergency surgeries were to repair a malfunctioning shunt.

His epilepsy is wildly unstable.

In saying that, the type of seizures Jacob has don’t cause his brain to be starved of oxygen, which we are incredibly thankful for.

He actually has non epileptic seizures (NES) along with epileptic.

His epilepsy is assumed to be medication resistant and he is currently on three different drugs to try and control it.

While they don’t think it starves his brain of oxygen, we are awaiting an MRI to see if there is structural damage/changes within his brain due to how often he has seizures.

We also have to give him emergency rescue meds if it is prolonged.

Why am I telling you all this?

Well, the point is, our child has changed.

My happy, easy going, enthusiastic and sociable little boy has just changed.

It is so hard to put into words, but he has had a massive regression in almost every aspect of his life.

His paediatrician has known us since Jacob was a baby and I pleaded with her to tell me why our child has changed so drastically.

She very gently said “We don’t know why, I’m sorry”.

That was literally one of those moments my knees gave way and I just had to sit down and breathe through almighty pain.

I’ve also been told that I get “tied up with semantics”.

That’s a fair comment, but a formal diagnosis allows access to the right support.

They have now said Jacob has a learning disability (LD).

As a trained LD nurse, I don’t understand this because he was assessed as being of “normal intelligence” (no insult intended, that’s their language not my own) before he began preschool.

LD is usually present at birth or would at least gradually become apparent.

This has been a sharp, quick and steep decline in how Jacob is able to cope with and understand his world.

When I asked if they feel he has brain damage, I was gently told that the outcome to both is the same and we have to change a lot of things in his life.

Knowing WHY something is or has happened means you can start to formulate a plan to address any issues.

You can also start to come to terms with it in whatever way you need to.

NOT knowing why is like being trapped in limbo, and is totally unbearable at times.

So what do I do?

I give myself permission to do whatever I need to feel better at that time.

Honestly, this can literally be asking my hubby or mum to watch the kids so I can take the time to go upstairs, change into PJ’s and hide under my duvet.

I have Multiple Sclerosis as well, so rest is vital to making sure I am able to function, especially when I am under a lot of stress.

Sometimes though it really is a case of trying to hide from it all.

I also give myself permission to openly and actively challenge his medical team to keep trying to find answers so that we can help Jacob as much as possible.

While we are in this limbo, we continue to love Jacob fully and unconditionally.

We will always accept him for exactly who he is, not for who we want him to be.

He is the most incredible little boy and we are so deeply in love with him!

I try to focus on making memories as a family because all three kids (triplets!) deserve a brilliant childhood no matter what hurdles we have to get through to make that happen for them.

We are very fortunate to live in an absolutely beautiful part of the world where we have access to all sorts of “beauty spots”, including a lot of beaches.

Since we are in Northern Ireland, it certainly doesn’t offer a lot of sunshine (slight understatement) although that doesn’t stop me feeling it is stunning.

There’s a particular country park within about 15minutes of our house that I like best because it has access to both coastal and forest walks.

Unfortunately…as most wheelchair users will know all too well, sand and wheels just do not mix.

If you don’t have a wheelchair in your life, think if you have ever tried pushing a pram along the beach?! It is tough going, especially on the softer sands.

Our triplets are now six and we often go to one of our local beaches on weekends to spend some time together outdoors.

Jacob’s wheelchair is such an important part of his life because he wouldn’t be able to get round without it.

Obviously no parent wants their child to have to use a wheelchair but it is also something that allows him independence he’d otherwise not have.

The flip side of it is when we all head to the beach and his wheelchair becomes a hindrance instead of a help.

I have Multiple Sclerosis (MS) so I’m not really physically strong enough to be a lot of help to my poor husband.

There have been some pretty dodgy moments where we’ve genuinely thought “yip, we’re going to have to abandon the chair”.

Imagine having to ring an OT to explain your child’s SUPER expensive wheelchair is literally lost to the sea?!

Through a lot of trial and error we’ve worked out the best places to take him so that we can get down close to the water without risking wheelchair abandonment.

Having said that, he does suffer from impulsivity issues and has tried to wheel himself right into the sea so that his chair, which he calls “Dolphy” (he has dolphins on his wheels) can “have a swim”.

MS aside, there have been some pretty impressive reaction times to grab him before the chair AND Jacob are lost at sea!

Dolphy has had a gentler approach to swimming by having a bath (in several sections) when we get home to wash sand off all the important mechanisms.

Ideally, there’d be a lot more wheelchair accessible beaches around.

We are incredibly lucky though that we have a beach very close to our house that offers free hire of a beach wheelchair courtesy of the “Mae Murray Foundation”.

We were the first people to ever try it way back in summer 2019 and it is just brilliant.

We got to take Jacob down to the water and let him see his chair getting wet, which he thought was hilarious, and then go a walk across the softer sands.

It really was a magical day, such a simple thing has become one of my fondest family memories.

The whole experience has taught me that yes, disability can present you with a variety of difficulties that can range from mildly irritating to down right infuriating.

Before I had the triplets, I was a learning disability nurse so I’d been taught how to assess, plan, implement and evaluate interventions that were caused by health challenges.

This has set me up well for managing similar things with our son, although it’s much harder to do that when you are heavily emotionally invested and are literally living it 24/7.

Over the years I have learnt that there is definitely a degree of positive risk taking.

Are beaches “easy” places for us to visit? Absolutely not. In saying that, does it enrich our family time together? Absolutely.

So if you can, take the risk.

As long as it’s not dangerous, you will either succeed and have a brilliant time, or you’ll have (hopefully…) funny memories to look back on!

Be honest…are you singing along David Bowie’s hit song with that title?! I am now anyway!

Also be honest…are you feeling under pressure at the minute?

I’d guess the answer for most of us would be yes.

Schools are closed, hospital appointments are limited, contact with family and friends is restricted and we have just so many rules imposed on our lives.

Add that into the mix of having a child with complex needs and you’d be superman / superwoman to say you aren’t feeling the pressure of it all.

2021 was meant to be better.

Yet here we are, in lockdown number three!

Our six year old triplets are now being home-schooled by a mummy who has very little confidence in what she is doing.

It is terrifying, the weight of responsibility of educating my little people without any formal teacher training is definitely upping the stakes for me and putting the pressure on.

Our little man with complex needs is not able or willing to engage with home-schooling at all.

In fact, I’ve been fired already, apparently I’m “too boring”.

In fairness he has a point, I am definitely not as good as his school at making this all fun for children.

On top of his education, he is battling a variety of complicated health issues that are all creating frustration within him that is showing itself as challenging behaviour.

I truly believe all behaviour is communication and it is fairly obvious what he is thinking when he throws his sheets and pencils at me and wheels himself out of the room.

His medical appointments are now being done remotely in any way they can but have obviously reduced at a time when he is in crisis.

In the midst of it all, the building works began back in December to adapt our house to be more suitable for Jacob.

While this is clearly a positive thing, it is also additional pressure to have a team of workmen about with a child who doesn’t like change or understand why people are “smashing everything”.

I also have Multiple Sclerosis and for a variety of reasons have been classed as “Clinically extremely vulnerable” which means we have to limit who can come into the house as well as where I am able to take the kids.

We’ve decided it’s too risky for me to go to crowded play parks so I have enormous mummy guilt that the kids are missing out even more because of my own health too.

We are all trying our best to manage, but I know so many of us can relate to the feeling of being under too much pressure.

Special need families have the additional pressure of trying to keep our little people safe with reduced support at a time when you actually need even more.

It can feel very lonely if your child is unwell and you don’t have your normal routes of asking for help.

Jacob has started taking seizures through the night, which means I don’t sleep well and watch his “spy cam” to make sure I can see him breathing.

It can feel so intense.

I think now especially it is so very important to practice self care whenever you get a chance.

I have excellent support from my husband (who is working from home) and my mum who is our “bubble” household as she also helps so much.

Our other family and friends support us in any way they can within the limitations covid has put on us all.

Actually, one of my friends nominated us for a “shielding care package” of groceries from an amazing local farm and we won (along with lots of other very deserving families)!!

There are so many good people out there!

I hope you have good support in place too and if you don’t, please find some.

There are a lot of charities still running to support people under too much pressure right now so use any resources available to you.

Stay safe and remember this is all temporary!

Well we are finally here…the last month of 2020! I can’t say I’m sad to see the back of it, as I’m sure the majority of people aren’t.

I made myself the New Year’s resolution to try my best to find the positive in every situation (although obviously I do epically fail when my child is hurting!).

Well played 2020, that was a SUPER hard one to keep.

There have definitely been things I will take from this year though!

1. Health is wealth

It is so true what they say. Your health is never guaranteed and is so easy to take for granted.

For all the people who had their lives turned upside down by covid, I am so sorry.

I can’t express enough how my heart goes out to those who have lost loved ones to this devastating virus, and I could never take away from that.

I am genuinely thinking of the families who will be going through Christmas without cherished loved ones.

Now, more than ever, I am appreciating the value of health.

If you’ve read my blogs at all, you’ll know our son has faced a brutal year.

2021 looks set to not be hugely better as we are awaiting assessments that I think will lead to a diagnosis that will be a huge new challenge to face.

But Jacob’s here. The skill of surgeons, doctors, nurses, healthcare assistants, play therapists, OTs, physio, etc has allowed me the absolute privilege of writing this with my little boy safe in our home, along with his brother and sister.

2. You have to think outside the box

We have all been forced to adapt to the changing situations we have been in during 2020.

Rules around seeing friends and family has meant we’ve had to use technology like zoom etc to keep in touch.

Due to my own health difficulties with my MS, I use social media a lot as well as things like snapchat and whatsapp.

I’ve discovered that this helps me feel less isolated when I’m stuck indoors (haven’t we all been?!) or at the hospital watching Jacob sleeping etc.

I’ve been blown away by the amount of people who have supported me during all the difficult times, despite the fact I know it can be “frowned upon” to share some things the way I have; including in blogs.

I find it cathartic to do this though, it’s a way to tell our story and hopefully make someone else feel a little less alone.

3. We really shouldn’t be so quick to judge

I remember seeing some really disgraceful comments about migrants crossing the mediterranean sea in search of a safer life for their families.

Keyboard warriors came out and were asking how anyone could put their children in such danger.

Then the covid-19 pandemic hit and all the images started appearing of people pushing past each other in the shops to get…TOILET ROLL. Seriously.

I saw actual fights breaking out over toilet roll. The people who were commenting on those who try to cross the oceans have absolutely NO right to judge anyone after what our country looked like when the global pandemic hit.

I realise the irony of me judging the “judgers”…but I’m sticking with it.

I think the pandemic has shown the true colours of a lot of us, myself included.

4. Gratitude

So many people have helped us all through this pandemic (and it isn’t over yet!).

From postmen, waste collection, nurses, doctors, pharmacists, shop workers…the list would go on and on.

To all those people who have continued working and volunteering despite the risks to them, THANK YOU.

As I’ve said, I really don’t have the words to thank the people who have saved our son’s life several times this year.

Yes, it was hell to go through and I’d not want to relive one second of it.

But I am just beyond grateful to all those people who made it possible to have him home with us.

So as we move forwards into 2021, I wish whoever is reading this all the happiness they can find.

Sometimes you will need to look very hard, some days you won’t find it at all (and that’s ok), but please hold on.

As my very wise Granda would say, “this too shall pass.”

Happy Christmas everyone!

When we found out we were having TRIPLETS one of the big considerations was a car.

What car would take three newborn car seats with isofix bases along with two adults?!

Being totally disinterested in cars, if I’m honest, I left this to my husband to sort out.

I still remember Ryan driving home in a dark navy Citroen C4 Grand Picasso as I stood in our driveway gently stroking my massive bump.

We’re “those” people who name their cars (I had a little corsa called Molly that got me through uni) so we had to decide what to call this beast.

My brother in law actually suggested “Megatron” which stuck since I could shorten that to Meg.

Ah the adventures Meg and I had in the early days while I had to load up three newborns and a tank / buggy.

One of our triplets has additional needs, which is a fairly obvious “twist” to the story since I’m blogging for Firefly!

Anyway, he got a wheelchair when he was two which needed a boot that could carry it.

Good old Meg was up for the job for many years.

We decided though to add another car to the troop since Jacob was eligible for this under the motability scheme.

Again, my husband picked that car which was a Peugeot 5008 in an emerald colour.

Yip, it was actually called emerald and it took me a long time to love that car.

He was a big brute so we called it “Bruce Almighty”, shortened to Bruce.

I am fairly fussy about the kid’s seats so we took them to our local car seat safety centre to get their third stage ones.

With two cars and Ryan doing the preschool “drop offs” in Meg, we had to buy SIX seats.

I feel sick typing that, it was a pretty dizzying cost to be honest!

For whatever reason, in both Meg and Bruce, the seats had to be fitted in such a way that Jacob was in the middle.

This made it harder to get him in and out, especially as I have MS and am definitely not as physically able as other people might be.

This did mean I got to drive Bruce the most since he had more space in the back for me to navigate Jacob into his seat, so I’d all the mod cons (sorry Ryan!).

Bruce and I were good chums by the end.

Sadly, we had to make the decision to start looking at WAVs (wheelchair accessible vehicles) because Jacob is six now and over 17kgs.

There’s maybe some car enthusiasts who would be totally mortified having to drive around in one, but I actually welcomed the change since it would mean Jacob would be seated properly in his chair and I could just push him on.

We opted for a Peugeot horizon, which Ryan tells me is a car essentially remodelled to be wheelchair accessible.

We were assured the seats in the middle row were Isofix.

A long wait later, they took Bruce back and the new car arrived. Jacob has called him “Hector” after the skeleton in the film Coco (very odd, I know). Sadly…it turns out the seats are NOT Isofix (I’ll not get started on that) and there were a few other problems with Hector, so we had to start the process again.

Can I just make clear, I don’t judge anyone who doesn’t use Isofix at all.

I have personal reasons for wanting to use them, which I don’t need to get into.

This time we have gone for a Ford Turneo Custom Family.

It hasn’t arrived yet, and won’t for months yet, so we are having to compromise and put Ben and Chloe in the back row with just their seats secured by the normal three point seatbelt.

The new car will have the huge benefit of the kids still being able to sit beside each other with two Isofix seats for Ben and Chloe then Jacob fixed in his wheelchair in between.

How lovely is that! They don’t tend to fight and will keep each other entertained on car journeys so it’s a win all round.

It’s also got a spare seat behind the kids that we are calling the “nanny chair”.

It is absolutely huge and while I am terrified of learning to drive it, I’ve come to accept that it really is the best move for our family.

Yes…I’ll probably look very uncool driving in our custom bus…but how lucky am I to have a family to fill it?!

Have you ever watched a juggling act?

I remember seeing one on TV and thinking how incredibly talented the juggler was while also wondering how on earth did everything not come toppling down?!

That’s how I feel about our life at the minute.

Our beautiful boy is now six and if you’ve read any of my previous blogs, you’ll probably be fed up seeing the words “spina bifida, hydrocephalus, sensory difficulties and epilepsy”.

Those are just words on a page, but to us, they are the biggest things we have to juggle.

Jacob has battled some true demons this year, which hurts my heart so much.

If I could take it all for him of course I would, without a moment’s pause.

That’s a parent’s love though isn’t it?

In 2020 alone, Jacob has been admitted to hospital eleven times (not including the multiple seizures in between).

Eleven times we’ve had to watch our child become unresponsive due to seizures, call an ambulance, bring him through A+E and be admitted into his usual neurological ward in the regional children’s hospital.

I think there’s sometimes a perception that this becomes “routine” or “the norm” for us but truthfully, it doesn’t.

Each time it happens, I have the heart wrenching fear that we are going to lose him.

Is that being melodramatic? I don’t think so.

Jacob’s hydrocephalus is controlled by a ventriculoperitoneal (VP) shunt that drains the excess CSF from his ventricles.

This is a life saving device and if it malfunctions, it can be fatal.

Unfortunately, each time he has had a shunt malfunction he has presented in totally atypical ways.

There’s no pattern to follow, none of the usual signs or symptoms and nothing to reassure us that he’s OK.

He has had three emergency neurosurgeries within the past three months. 

The presentation on these occasions has been an increase of epileptic seizure activity.

That we could handle, it was a pattern! If he has more seizures, push to get the shunt checked. Easy right? WRONG.

The only real way to check the shunt is working well is to do a CT scan.

Children are meant to have a maximum of five scans in their lifetime to reduce the risk of brain cancer due to the exposure to radiation.

We’ve genuinely lost count of how many Jacob has had now (he’s on his eight shunt) so the two main teams who look after his shunt and epilepsy are growing increasingly worried about the risks.

How do you balance that?

Thankfully, it isn’t our decision (although is very much our worry). We bring him to hospital and tell the “story” of what’s happening and then it is up to the neurosurgeons to decide if the symptoms warrant the risk of a CT versus the risk of missing a shunt malfunction.

Sometimes it’s a case of “wait and see” in hospital which can be both frustrating and terrifying.

Our most recent admission has been the most confusing yet.

Jacob seems to be very triggered by school and will often have seizure activity there.

His EEG has confirmed he has epilepsy so we have to treat this as if he is in trouble and manage it safely.

Despite that…his behaviour worries me a lot.

As a trained learning disability nurse I have felt for a while now that Jacob shows some traits of autism (which isn’t to say he actually has autism).

For example, he is very reluctant to touch certain textures, he has a very restricted list of foods he will eat, he claps and shakes his head, he will seek out firm touch and will often not understand play if it isn’t directed by him.

Sadly, he also hits out if he becomes angry and will become incredibly emotional if he doesn’t understand what’s happening.

His neurologist now feels that some of his “seizures” are actually episodes where his brain “shuts down” because he can’t cope with what is being asked of him.

These totally mimic his epileptic seizures but if she’s right, they aren’t true seizures at all, although are definitely horrible neurological events for him.

So now if Jacob has a seizure we have to worry if 1) He is having an epileptic seizure, 2) He is having a “non epileptic event” or 3) His shunt has malfunctioned.

How on earth are we supposed to juggle all that when it looks the same for each scenario?!

At the end of the day, while he still needs an education, we always have to err on the side of caution at the minute until they tease this all apart.

That means we could be giving our child incredibly strong rescue medication unnecessarily, or exposing him to radiation he doesn’t need.

It is a huge mental load to carry and one that we are most definitely not yet working through effectively.

I can’t really find the words to describe the trauma I feel we have been through.

I feel guilty typing that because I truly know so many people have been through so very much worse.

Jacob is upstairs asleep safely at the minute; and I know how fortunate we are to have him here.

Our triplets are my husband and my whole world and were desperately longed for children.

Sometimes though, the juggling act we have to cope with gets too much and things just come tumbling down.

I’m not proud to say that I am suffering mentally from what we’ve been through and while I know counselling is probably a good idea, we genuinely never seem to get enough of a break to even organise this.

It’s been constant for so long now we are just exhausted.

I often hear people say “I don’t know how you do it!” but the truth is, you don’t get a choice.

Jacob seems to have been dealt a really rough hand and he deserves parents who won’t give up and will keep picking themselves back up off the ground and preparing for the next wave of pain.

I realise Firefly is a big company, so has a far reaching reader base that may be all around the world.

So I should probably explain first that “do one” is not a good thing, and essentially means it should GO AWAY.

In my little part of the world, we have had one lockdown which went from the end of March to the start of July basically.

Since then, we’ve had the “rule of six” that restricted how many people could meet in your household and then a “circuit breaker” that extended the halloween school break by an extra week but was four weeks in total for hospitality etc.

We’re all still waiting for the powers that be to decide whether or not certain industries can reopen.

At the beginning, I remember standing outside our front door clapping and cheering for our NHS staff on the frontline as well as all the “private sector” healthcare workers who were risking their own and their family’s safety to ensure the most vulnerable members of our community were helped when needed.

How do things look now, eight months later? Horrific, truth be told.

I have seen some absolutely vile comments on BBC news social media pages as well as people’s own status updates and keyboard warriors in Facebook groups.

As someone who was medically shielding due to being “clinically vulnerable” myself thanks to an MS immunosuppressant therapy I’d taken, and also a mummy to a little boy with complex medical needs…all of these comments hurt.

Not only that, they make me so angry as a former nurse myself.

I’ve been speaking to a friend who used to be one of my fantastic healthcare support staff when I was a senior nurse before I had my triplets.

She has since trained to be a nurse and works in our regional ICU centre.

If anyone has seen the pics, the “uniform/PPE” (or armor, more like) that these staff are expected to wear is heavy, hot and incredibly uncomfortable.

She continues to look after the sickest people in the country and has seen such a mighty shift herself in public attitude towards these healthcare heroes.

I was genuinely horrified to hear that she was both verbally and physically assaulted when trying to stop someone entering ICU without a mask.

Really? Imagine rocking up to ICU with no mask on in the first place and then having the audacity to abuse the nurse who challenges you to ensure YOUR OWN SAFETY (as well as everyone else’s).

Let’s just have a little think here.

Do people believe that prior to the coronavirus global pandemic that ICU staff sat twiddling their thumbs all day?

No. They deal with road traffic accidents, traumas, catastrophic brain injuries, multi organ failure, out of hospital cardiac arrests, post surgical complications or where high intensity of support is needed, worsening ward patients etc.

Any one of us are just an accident/illness away from needing their services.

Where are we going to go if all the staff decide enough is enough and that there are easier jobs (which, by the way, there 100% are) and walk out?!

Our son has needed three operations since this pandemic began.

One was “routine” yet we went ahead because it was also essential for his long term health.

We were only allowed one parent with him and we had to stay on the day unit ward while he went round to theatre with the team.

This was the first time I’ve not been with him when he was going under general.

As traumatic as it was, we got through it and he was none the wiser since he got to flirt with all the amazing staff who distracted him so well that he didn’t even need to be sedated to relax him.

His two operations since then have been emergency neurosurgeries for blocked shunt.

Again, I won’t lie, it was incredibly difficult to not be allowed to go with him and hold his hand as he was sent off to sleep.

We’d to do that all over again less than 24hrs later.

Please trust me when I say, I am not sitting from a position of naivety in commenting about this.

Not only did I used to be a nurse, but I have a delicate medical condition myself and am mummy to an incredible little man with complex needs.

Our healthcare staff NEED our support now more than ever to battle this deadly virus.

I know that this affects the economy and on that point of view I am fairly underqualified so I know there will be people saying it should be put first for all the “healthy” people (ummm….Ableism muchly?!).

I understand how absolutely horrendous that has been for the smaller business owners as well as families relying on the income.

Covid doesn’t look to be going anywhere anytime soon and so the war wages on.

I absolutely beg you though to please remember…all of us are at the mercy of the healthcare system if covid hits us hard and since nobody knows what way it will affect individual people, we should all follow advice. 

You really don’t want to be the one having delayed treatment while they try to find you an ICU bed with a ventilator and a nurse trained to use it (which I’m told takes around 18months!).

So yes, government advice can be very unclear.

Common sense can also be lacking.

In saying all that, I don’t think we can go far wrong to please wash our hands well and often, wear a face covering, maintain social distancing, avoid crowded spaces where possible and maintain “bubbled” households.

If you can do all this we all have a hope of getting out of this alive and being able to tell future generations about the time the world pulled together against one of the biggest enemies yet!