It’s no secret that as a country, we’re hurtling towards a difficult winter.

Speaking as an immunologist, there are the usual concerns about seasonal flu added to the uncertainties that covid poses.

Although we are officially coming to the end of the pandemic, the virus is still around and the health service is struggling after two years of incredible strain.

Viruses, flu and other infections we are used to dealing with however – as the mum of a disabled young man it’s the energy crisis that is causing me the greatest number of sleepless nights.  

While illness will always be a worry, I do feel somewhat reassured that my boy has had covid twice without too many major issues and that we’re as prepared as possible for flu season.

But how on Earth can we prepare for the predicted, astronomical rise in energy costs?

The Dude relies on a lot of electrical equipment – turning it off to save money is not an option.

Vulnerable individuals like him need to keep warm or their resistance to illness decreases, breathing in damp cold air is not good for those of us with respiratory issues.

I will admit that the new Prime Minister’s announcement on energy costs makes me feel a little better, but not a huge amount, and the additional payment disabled individuals qualify for will be gone almost as soon as it arrives. 

Currently, we plan on keeping the heating off as long as possible, lowering the thermostat when it does eventually have to go on, and keeping doors closed so we only heat the rooms we need to.

Martin Lewis (the moneysavingexpert) says ‘heat the person, not the home’.

So we will be investing in hooded blankets and electric versions for bedrooms (much cheaper to run than central heating).

Hopefully, that’ll keep things ticking over.

The boy himself doesn’t seem overly concerned mind you; the Onsie being his favourite item of clothing, preferably fleecy, hooded being an added bonus.

Currently, he is glaring at me as I type in case I get ideas about taking his photo as he sits resplendent in a lime green Minecraft version.

Ladies and gentlemen, I have been Told. 

Right now, I am lying on the sofa bed in the Dudes room, listening to the sweetest sound imaginable at this moment in time – my beautiful boy snoring softly.

Granted, this may not be other people’s idea of music to their ears, but to mine, it is priceless because I know he is breathing. 

Just two weeks ago, he made the move to high school; safe to say it’s been a huge success so far.

He loves the shorter drive (15 minutes compared to 1 hr to his old primary), is enjoying his classes, likes his new teachers and TA, and is coming home happy and tired at the end of the day like any other 11-year-old.

And, like every other child suddenly returned to the germ soup that is a class full of new friends, the Dude has come down with the dreaded lurgy. 

Except, for a boy with respiratory issues, life-threatening seizures, and a few other complications thrown in, there is no such thing as ‘just’ a cold.  

After a tricky evening managing secretions with chest physio, seizures going off the scale and regular calpol (seriously, how DID parents cope without it?!) my young man has finally drifted off to sleep… the aforementioned soft snoring confirms this.

While the occasional seizure may startle him awake, it’s a much gentler noise than the screech of his SATs monitor alarming.

Snoring is a symptom of his low muscle tone; with a history of sleep apnea it’s something we keep a close eye on.

His vagus nerve stimulator – the small but powerful implant that stops around 70 seizures daily from establishing – has the unfortunate effect of relaxing his muscles even more so snoring/apnea can be worsened.

The Dude’s amazing team monitor his carefully to ensure his breathing isn’t affected while giving him the best seizure control possible.

It’s a fine balance involving his respiratory and neuro teams, regular sleep studies and a lot of communication, but it works to keep our boy home where he belongs and out of hospital as much as possible. 

With a bit of luck, good management and offering up a quick prayer, this bug will pass quickly and he can get back to school.

At least we almost managed two full weeks?! 

Oh good grief, I thought the UK was meant to be a temperate, damp country?!

Unfortunately, as climate change takes hold and the UK bakes in the second 4 day heatwave of the summer, Team V have taken shelter in our front room where it is (for now at least) mercifully cool!

Amongst the various dire weather warnings on the TV, there are few of note that are not publicised quite so readily but that if you stop to think make perfect sense.

For example, children like the Dude who use wheelchairs and have limited or no independent mobility are at a very great risk of heat stroke – they can’t seek shelter if you don’t take them to it.

Likewise, sitting in a chair all day gets very hot and sweaty; for kids like my boy who take medications that already increase their need for water during the day, the sudden increased temperatures put them at a much greater risk of heat stroke and dehydration than their peers.

The same goes for adults too.

A number of medications including SSRIs, blood pressure medications and others will also increase your risk of heatstroke.

Trust me, it isn’t worth getting sick just to soak up the sun’s rays for a few days of extreme heat.

We *will* have sunny days again in the UK (promise).

Another issue for my boy is that the changes in air pressure herald an increase in seizure activity – and it’s a real doozy.

For the first day of this heatwave, the poor chap was pretty much twitching constantly, tipping into a full seizure every hour or so.

They may not look like much but they are exhausting for him. The only thing to do at this point is to try and keep him cool.

Enter, the Cool Pool.

In truth, this is simply a 2m wide, 60cm deep paddling pool bought off a well-known internet site, set up on the patio.

Thanks to its fabric cover and filter it stays clean, and the sun warms it enough to take the chill off, however, it is still a tad cool shall we say.

Perfect for when the temperature is +30C and you are an 11-year-old chap who feels like he’s melting.

Mum and Dad are quite big fans too.

Forget the expensive SN equipment for a moment; this paddling pool has quite simply been the greatest investment of the past few years.

The Dudes gantry hoist fits over it allowing easy depositing/removal of said small person, hopefully meaning we’ll get a few years of use out of it.

The support of the water allows him the freedom to move independently, something that gives him immense joy, and the resistance it provides helps exercise his muscles building his strength.

Best of all, he loves being in it so it’s physiotherapy in disguise – our favourite kind!

If like us you have a child who hates the heat but loves the water, the boy and I cannot recommend this strongly enough.

Since the Dude was tiny he’s struggled to cope with hot weather. We dreaded summer during his early years, it was a never-ending battle to try and keep him comfortable and not over-heating… a guaranteed seizure trigger.

The poor child was in and out of seizure constantly. He loathed it, we loathed it. It was miserable.

During the summer of 2014, when he was 3, we were on holiday with my parents.

Those who remember that year will remember that although it wasn’t record breaking as such it WAS consistently very warm all summer.

Sam was lethargic, seizures were off the scale and we’d exhausted all the usual suggestions for keeping the little chap cool. In desperation, an online order to Argos was made for a small, toddler-size paddling pool.

Knowing how much this child HATED being in anything but the warmest of waters, we were not overly optimistic that he’d tolerate it, but as I say we were desperate.

It was a game changer. He spent that summer happily lying in his pool, splashing about, keeping cool. His seizures calmed down, he slept better, he was happier. We have never been without a pool since.

This July, the UK is due to turn into a hot box for a few days as temperatures soar to over 30 ֯C – today has hit 38 ֯C. I am currently typing this at 22.14, and its STILL 27 ֯C out there.

I won’t lie; while I like the weather hot and sunny I was more than a little concerned about how my boy would cope.

Last year, as he’s now substantially bigger than he was, we had to upgrade his old inflatable pool to a larger one and its been up and ready for the last couple of days in preparation for this heatwave.

We still use other methods to tackle the – he has a fan in his room, we keep his curtains firmly closed during the day, and when its as hot as it is currently a bowl of ice/water in front of his fan works wonders at cooling the air.

But just like when he was teeny, the thing that reliably helps him cope in this weather is getting in a pool.

It brings his core temperature down, he gets to play and splash about, and best of all he uses his limbs. Doesn’t sound much does it, but for him its huge.

He builds strength playing in the water, learns how to control his arms/legs. Its physio, by the backdoor, and I strongly approve!

After the chaos of the last two years (yes covid, I mean you) it was lovely to actually sit IN THE SAME ROOM as the Dudes form teacher and teacher for the visually impaired (theres a mouthful if ever there was one), and go through the progress he’s made this last year in preparation for him moving up to high school in September.

These ladies have been with my boy for a long time – his VI teacher for example has supported him since he was 3 years old, so moving on and leaving her behind is going to be a wrench.

Together with his teacher, teaching assistants (there have been many) and other lovely staff who have worked with him since he started at this school, they have not left a single stone unturned in their efforts to find what worked best for him.

I still remember his first proper session with his VI teacher in early years.

She came prepared with a massive cardboard box, all blacked out inside to really heighten the contrast for him; she had a range of toys from cheerleaders pompoms in tinsel, light up toys, brightly coloured wiggly things… she had a fight on her hands as all the children wanted to play!

A chance conversation with her highlighted my boys love of LEGO; at his next visit from her she brought light up LEGO blocks, to see him suddenly ‘switch on’ and use his vision purposefully was nothing short of incredible.

It is beyond nerve-wracking to leave behind these amazing people who have loved my son as if he was one of their own, and who have given him so much over the last 8 years.

Currently he’s one of the bigger kids, in September he’s going to be one of the little ones again.

It is very clear to everyone that our boy is ready to move up to high school but it really does feel like the end of an era.

As we were finishing, his VI teacher smiled and said her go-to memory to show how far our boy has come is from her first meeting with him; ‘when I first met him, it took 5 minutes for him to be able to focus on an object. When I assessed him recently, it took 40 seconds’.

Proud? You’d better believe it.

Dry-eyed? Not a chance.

Back in June, we had Carers Week; for me and Mr V, and millions of others, every week is carers week.

No parent chooses for their child to be born with a life-limiting condition or disabilities.

Likewise, no parent would ever choose for their child to develop these as a result of illness, accident or another cruel twist of fate.

But it happens.

And when it does you find yourself in a world of medical terminology, testing, grief and often fear for the future.

But there is also hope.

This isn’t a club anyone plans on joining, but once you’re in, you’re a life-long member. The other members are pretty awesome and will show you that being a carer is not only an incredibly worthwhile role but comes with a huge amount of positives that help to balance out the difficult bits.

True, it is exhausting (mentally, physically and emotionally), and will take a level of courage and strength on your part that you never thought you had.

But you will find it, and then some.

Being a parent-carer will open your eyes to a different world, one where no achievement is considered minor or insignificant. Every bit of progress is celebrated, every individual is valued and loved for who they are not what they can or can’t do.

It will teach you what it means to love unconditionally.

You will experience the kind of highs that make you feel like you’re soaring, and while the lows will take you deeper into the abyss than you imagined possible there will always be others there ready to sit with you in the dark and to help you climb back up again when you’re ready.

Every time your child does something that others take for granted you will want to punch the air with pride and joy because you KNOW how hard won that victory is.

You will learn greater empathy, how to advocate for those who need you, and you will become your loved ones greatest champion because they are yours.

The Dude is blessed to have a huge number of people in his corner, who love, support, encourage and cheer for him… but I count me and his Dad as the lucky ones.

Because we were blessed with this amazing, bright, gentle and happy little boy.

To those just starting on this journey as carers I can’t promise it’ll be easy. But I absolutely promise that it will be worth it.

TRIGGER WARNING: discusses child death

It’s a fact of life that every one of us will at one point in time cease to be as a living, breathing person. Its inevitable.

And while not the most comfortable of topics to discuss, it is important to do so.

Both J and I are clear on what we want to happen after our own deaths. And as parents of a medically complex, life-limited child there are certain realities that we need to address.

We will almost certainly have to bury our child, and while that is a devastating thought to live with it also means that we have a chance to prepare.

I don’t mean prepare ourselves per se, as someone we know once said knowing that something is going to hurt doesn’t stop it doing so when it happens.

What I mean is that we can decide what we want to happen, where we want our boy to receive end of life care and what that care might look like, and what interventions we do and/or do not want him to have.

This comes in the form of an Advanced Care Plan; it’s something I have feared and run away from even thinking about for years.

After all, my son isn’t actually dying is he?! He’s currently well, happy and enjoying his life.

And as long as that is the case I can exist in my lovely, happy bubble and stay, well, sane.

We are very fortunately to be supported by an amazing palliative care team; the Dude’s consultant explained an ACP is just like a Will, it is in fact called a ‘living will’ by some.

It doesn’t mean we’re writing him off, but it does mean that our wishes are recorded so that if/when its needed we can focus on just being with him.

I’ll admit that has helped me put things into a better perspective. 

As a society we’re getting better at talking abut mental health, but we still baulk at talking about death; too many people don’t have a Will in place, don’t talk about organ donation, or whether they want to be buried/cremated/have a natural burial.

If by talking about it in a positive way and putting things into place we can ensure that our son’s eventual passing is as peaceful and the best death possible, then surely that’s something we should welcome the opportunity to do?