Winter is Here - complex health and the festive season

Two days ago I overheard a nurse say, “Winter has hit the NHS.”

It truly has. We’ve been in hospital for the last four weekends now, and to say we are miserable would be an understatement.

I’ve been pleading with whatever is out there to please just give us a break. Upsettingly, the season doesn’t necessarily matter anymore as Amy’s condition can flare up at any time, but winter does come with added struggles.

One thing that has hit especially hard this time is the realisation that you simply cannot spin every plate, all of the time. I’m not ashamed to admit that I have cried more during this admission than any before… and we are only two days in.

Not only is it a financial worry when you’re juggling work and childcare, but there’s the fear of losing your job.

I had to give up work a long time ago, and I miss it sorely every day. Don’t get me wrong—I am overwhelmingly privileged to be Amy’s main carer (mum first, of course!)—but watching how these admissions affect Phil’s ability to work, even on reduced hours, is becoming a real concern.

As I type this, with the resounding beeps and the glow of machines around me, I feel tightness in my chest. I feel tearful, overwhelmed, completely depleted. I miss my 13-month-old. When I think about her, I cry. I can’t stand seeing Amy unwell. I hate the constant poking and prodding and not knowing if she understands why it’s happening.

We’ve had a few terrifying moments when she becomes unresponsive and needs what feels like excessive respiratory support. Those moments—when the room starts to fill up—are something no parent should ever have to witness. We aren’t given the time to decompress and process, we must just continue on.

At home we use a high-sided padded bed to keep Amy safe. Unfortunately, those beds don’t fit in a small hospital cubicle. Our options have been:

A) a safe bed in an open ward where we risk catching additional illnesses, or
B) an unsafe bed in our own room, away from other bugs.

I chose B, but I feel angry and sad to face these options every time.

No amount of advocating or complaining can make this place fully meet her needs. In an ideal world there would be spacious rooms, fully adapted for children like Amy. There’s a mobile hoist, but it’s too big to get into the room—so we pay the price with our backs.

I think until you are in our world, you just can’t understand how lonely it is and the added stresses and strains that come with it. I have made the mistake of “doom scrolling”, seeing all of the amazing fun winter activities everyone has been getting up to. I’m happy for everyone, but I don’t want to miss out on any more than we already have.

When we finally get home, my favourite thing to do is give her the best bubble bath. We can enjoy soft furnishings, fewer (but still some!) beeps, and—most of all—step back into normal everyday life and return to complaining about the small things that really don’t matter. I also cannot wait to wash my hair - what a luxury.

I really hope both of our girls feel equally loved whilst we split ourselves every which way.

I hope they see that mummy and daddy are giving everything they can but wish they could give more.

The purpose of this piece is not to gain sympathy, but to let others like us know that you are not alone. All over the world there are families like ours, collectively hoping for easier times and feeling great empathy to others that are suffering. You are doing your absolute best and I am proud of you.

Wishing everyone a gentle and uneventful winter.