Back On The Road!

Benny’s Back on the Road — and So Am I (Sort Of)

This morning, I waved Leo off on his school residential — his first big solo adventure ever!

There are no violins playing, but the truth is… life with a child like Leo is a beautiful, relentless battle. Every single day we fight for the basics: medical care, education, the support he’s entitled to — or simply unpicking dysregulated behaviour to bring comfort in the moment and learn from it for the future.

The bureaucracy, the red tape, the constant advocating, and the need to micromanage every detail of your child’s care… it wears you down.

The Emotional Toll of Caring

It’s not just physical exhaustion.

It drains your mind, your heart, your soul.

But Leo’s needs come first. Always.

That’s the job.

That’s the love.

That’s also the triumph — and the cost.

The Habit of Doing It All Alone

Somewhere in all that giving, I’ve realised something important:

I never ask for help.

I don’t accept it when it’s offered.

I don’t rely on others — because, in line with past experience, it’s the only way to avoid disappointment.

As much as that’s stubbornness and independence (and, let’s be honest, pride), it’s also me robbing others of the joy I know so well: the joy of giving.

I love to give — of my time, of random gifts, of comfort. It brings me happiness to lighten someone else’s load. But I’ve rarely allowed that same joy to be returned.

A Work in Progress

I’m working on it.

So… I’m trying to break the habit.

Leo’s away, and instead of filling the time with chores or overcompensating, I’m choosing rest.

• Sleep

• Eat well

• Cook over a campfire

• Try out some new recipes using beautiful Devon produce

(After all, Cooking, Campfires and Chromosomes isn’t just a catchy title.)

And most of all: breathe.

Benny’s Back Too

Benny — freshly MOT’d, fully suited, and hand-washed within an inch of his bumpers — is thrilled to be back on the road.

And me?

I’m quietly thrilled to remember that I still exist outside the role of full-time carer.

To Other Parents and Carers:

Please remember this:

• Ask for help.

• Accept it when it’s offered.

• Let people in.

You’re not failing by asking.

You’re not failing by resting.

The housework can wait.

You’re not weak for needing support.

You’re simply human.

Let this be your reminder — and mine. 💛