Disconnected, despondent, down and out

Emma Louise Cheetham by Emma Louise Cheetham Additional Needs

Emma Louise Cheetham

Emma Louise Cheetham

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my fee...

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.

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