The Complicated Aftermath of Respite

If you’re a parent carer, you’ll know that feeling of being “switched on” almost all the time.

The constant hypervigilance - watching for signs of distress, managing medication, food, sleep, behaviour, regulation - all of it running endlessly in the background of every day.

My husband and I have just come back from a couple of nights away. A rare break without our children.

I know how fortunate that makes us. We’re incredibly lucky to have some respite, and parents who are still healthy and able to care for our daughter. After an intense few weeks, my parents offered to look after our sixteen-year-old daughter with complex needs, and our fourteen-year-old son, so my husband and I could have a break together.

And honestly, it was exactly what we needed.

For a few days, that constant state of alert softened. We stopped scanning for meltdowns, stopped problem-solving, and stopped worrying about medication changes, sleepless nights, or health flares.

I was able to reconnect with my husband - talking, laughing, eating and drinking together - things that should be simple, but are incredibly difficult when caring demands take up so much space. We walked and explored without thinking about accessibility, sensory overload, or where the next ‘safe’ meal was coming from.

I was able to just be me.
And to feel free.

It was both exhilarating and comforting - a release I knew I needed, but one that made me realise just how intense life has been when I stepped out of it.

Coming home has been harder than I expected.

There’s guilt - for needing a break at all, for leaving both my children and my parents carrying something that so often feels like my responsibility. There’s also the anxiety of switching straight back on, knowing my nervous system has to return to that constant state of high alert.

If you’re living a life where you’re on that level of alertness for most of the day, you’ll understand how exhausting and relentless it can be.

The break also gave me a glimpse of an older version of myself - and that’s where things get complicated.

Alongside the relief, there’s sadness. And anger. And, if I’m really honest, jealousy.

Jealousy of the life I might have had if my daughter didn’t have a disability.
Jealousy of families who don’t live in a constant state of vigilance.

That jealousy doesn’t cancel out my love for my daughter. I love her with every cell of my body. But pretending those feelings don’t exist doesn’t make them disappear - it just turns them inward, where they do damage.

Naming them feels risky - but it also feels necessary.

Because when we only talk about the positive, carers are left isolated in their most honest thoughts. And when we don’t talk about the hard parts, our children don’t get the support they need - and neither do we.

I’m sharing this because I know so many others are struggling too.
Some without respite.
Some without family support.
Some carrying everything alone.

If that is you, please know this - having some kind of break matters.
Time to stop, to decompress, to reset - not to fix the future, just to breathe.

This break didn’t fix anything.
But it reminded me that I still exist underneath the caring.

And right now, that feels really important.