These days we frequently hear the phrase “it’s ok not to be okay”, and it’s often reassuring when you hear of others who may be having a tricky time, especially when so often social media only portrays the “perfect” images of life.

Life as a family with additional needs may feel some way off being perfect – wonderful, loving, rewarding? Yes. It can also be tiring, isolating and challenging.

It’s ok to not be ok, as you can take your time, get support, and find your way to bounce back.

But what if you can’t? I can’t help thinking about those people who are not ok.

I don’t mean as in having a bad day, or a tricky week. I mean really not ok. What if you have to make the heartbreaking decision to accept that you are not able to look after your child in the best way possible, either for their sake or yours?

I’m sure, like me, you know of a family, or families, who have fostered or adopted children, some with additional needs.

I’ve seen it for myself the love and warmth that these children get, and watch on in admiration at the adults who welcome them in to their home as their own.

I am sometimes in awe as to how they do it but thank goodness they do.

I can’t help but wonder what may be happening in the other side of the story, with the parent/s who no longer have their child with them.

As a mum of a little one with extra’s (cerebral palsy, tracheostomy, epilepsy, dystonia, the list goes on), I’ve heard the phrase “God only gives special needs children to special people”, and whilst the sentiment is nice, it just doesn’t sit right with me.

I get that’s a personal opinion, so feel free to disagree, but if that were truly the case, then no-one would struggle, no-one would have to admit that they aren’t actually ok.

The world of additional needs is one that I didn’t really know much about before I had Heidi, and it’s like a secret club that you suddenly find yourself in.

You might not have chosen to be part of it, but it’s pretty cool if you find the right people, and there is so much support out there.

I really hope that those parents who have had to say they aren’t ok are in their own club too, where, just like us, they aren’t judged, they can talk to people who “get it”, and they can find a way to their new ok, whatever that may be.

This week, the first case has been confirmed in our city of this new strain of coronavirus, and at the same time the powers that be have said that if it becomes a pandemic there may not be treatment for people that would be considered less likely to survive – that is probably our little one.

Frightening right? This thing which can spread so easily is not fatal to most healthy people so they don’t take it very seriously but to the people they can easily spread it to it is fatal.

It had already been a dangerous winter before the outbreak and our family have rarely left our house together over the winter months.

Those are just the harsh realities of sickness, this isn’t anything new, it is the same situation with flu.

Where I really struggle is when I head out to a supermarket to get supplies and somebodies child is walking around coughing and sneezing without covering their mouth and with the adult never advising them to do so (when did we stop teaching this to our children?).

That is difficult to put up with knowing that they could be carrying a sniffle which could leave my child in intensive care for which the germs are being spread all over the packets and products in the store…. And these are just the ones I witnessed.

What is unforgivable though is that I see fully grown adults doing the same thing on a regular basis, how wonderful it is to see an adult belt out a number of uncovered, open mouthed coughs directly towards all the food products just in front of them.

Is it ignorance or selfishness, I don’t know but it certainly tests my patience.

It is crazy that the spread of dangerous diseases is so easily stifled by following a few steps which I’m sure will be shared far and wide but I’ll sing that same song here because people don’t seem to get it.

WASH – That shouldn’t really need explaining but to some it does, which is worrying. Wash your hands (properly), ALL THE TIME. How ever much you’re doing it… it’s not enough.

COVER YOUR COUGHS – and your sneezes too. Absolutely incredible how many people don’t do this. The best way is to use a tissue, bin it and wash hands.

However, it usually catches us unawares so if you can, cough or sneeze into your elbow rather than your hands (wash that area too when you can but you usually get sick from touching your face with your hands after coming into contact and spread through handshakes and touching surfaces).

STAY HOME – This is a big one, so many people carry on with life when they’re sick thinking that they are brave and no nonsense, but they are putting lives in danger and it is selfish. Stay at home and get it cleared.

One of the main pieces of advice when this latest sickness outbreak came out was that if you think you have symptoms DO NOT LEAVE YOUR HOME.

Contact NHS direct or your GP over the telephone and if your symptoms match, they will help you in a way that stops the disease spreading.

Since then I have spoken to friends who told me they went straight to A and E because they thought they had symptoms and I’ve spoke to healthcare workers who said they were struggling to keep up with the people coming in who think they have COVID 19.

So, with this highly infectious sickness worry they go to the local hospital where all the sick, elderly and disabled people are, because they didn’t think beyond themselves.

Now that its in our city we’re pretty afraid, strongly considering pulling our eldest out of school and staying at home unless completely necessary as a death sentence for our youngest is not far from home.

Hopefully this fright will come and go quickly but there is always something new around the corner as well as the ever-prevalent flu.

Hopefully this will be a wake-up call for many people.

Stay-safe

Tears fall down my face as I sit staring at the sats monitor relentlessly beeping as Jaxon is sound asleep.

I’m willing his numbers to climb. If they don’t then the nurse will come in and turn his oxygen back on.

That’ll dash any hope of going home in the next 24 hours and we’ll start the cycle all over again.

Minutes turn into hours, hours into days. Before I know it another week has passed.

The world keeps turning but I feel almost disconnected from reality. I guess that’s what the monotony of hospital life does to you.

My back is in bits as I toss and turn, wriggle and writhe trying to get comfortable beside Jaxon’s hospital cot on the put up camp bed that I’ve slept in more than my own bed these past few months.

I tell myself that despite how bad it feels right now, it could always be worse.

At least I’m inside and I’m warm. My child is here and that alone is a miracle.

It doesn’t change the fact that I’m completely miserable, watching life pass me by as I’m sit in a pit of emotional exhaustion that I’m struggling to climb out of.

We’re on our fifth inpatient admission in 10 weeks, our 12th admission since Jaxon was born 16 months ago. I have little to do in the confines of the hospital cubicle so I resort to counting our total time spent here.

I’m surprised by how many days we’ve lost to hospital life yet it still feels like so much more. We’ve hit almost 200 days. Given that Jaxon isn’t even 500 days old yet, that is a lot.

I tell myself it’s no wonder that I’m so done in.

The truth is, this is our reality and even once we get discharged, it’ll only be a matter of weeks or months if we’re lucky before we’re back here.

Jaxon is so medically complex that he doesn’t have the immune system to fight off viruses and infections like a typical child.

The common cold can floor Jaxon for up to six weeks and almost guarantee a stint on some sort of breathing support.

That’s why we have open access to the children’s unit. A magical pass that nobody wants to need.

It helps us skip the waiting in A&E but it’s just another in a long list of reminders that our life is so medical, that life will never be how I imagined it and it’ll never ever be simple.

I’m powerless to change our situation.

Whatever I do, however well I try to keep Jaxon, it seems to be to no avail at the moment and we’re stuck in a pattern of hospital for a week, home for a week, repeat.

It’s viral season, the worst time of year for kids like Jaxon and this season has been particularly rough.

Our little community has been hit hard with hospital admissions these past few months. A couple of our recent stays have been more like HIE gatherings where we get chance to catch up and grumble about the relentless and devastating consequences of our children’s complex needs.

I’m currently carrying the baton alone thankfully as all the other local kids are plodding along quite nicely.

I’m pleased for them of course, it doesn’t improve my situation any if they’re in here too, even if it does make it a little less lonely, but I can’t help but wish that was us too. That we were at home, instead of battling infection after infection.

A few days ago, I had a parcel delivered to the hospital. Flowers, chocolates and a lovely card with the most beautiful words written inside.

“If I could give you anything today it would be the power to see yourself through my eyes so you can see how amazing you really are.”

My secret fairy godmother I’ll refer to them as, they didn’t sign the card. This kind gesture brought me out of my pit of despair, if only for a moment.

It reminded me that no matter how done in or how down and out I’m feeling, I’ve survived so much and this is just another bump in the bumpiest of roads.

I only wish it was as easy as the council resurfacing the road to make my life a little less complicated but that’ll never be the case.

So instead I’ll take a great deal of comfort from these random acts of kindness.

To know that you are a thought in someone’s day, that they’ve gone out of their way to do something to remind you that you are loved and you are thought of is such a powerful and beautiful thing.

For now we are stuck here, who knows how many days or weeks it’ll be for this time. But I know that no matter how hard it all seems, how much it feels like I’ve hit rock bottom, Jaxon will be okay.

Together we will be okay.