The Invisible Shift

Dear Diary,

I was looking at an old photo today from when the twins were seven. It’s strange how the 'chaos' changed back then. We had survived the nappies and the toddler meltdowns, but suddenly my calendar was filling up with things I couldn't physically control.

I call it the 'Invisible Shift.' 

It was the era of the school run, the constant buzz of birthday parties, and those long afternoons at the dance studio. On the outside, I was just another mum waiting for her kids, but on the inside, I was constantly calculating my bandwidth—measuring exactly how many steps I had left before my body gave out.

This was when I really learned that my 'maintenance' wasn't a luxury—it was my armour. 

Here is what those years really looked like behind the 'I'm fine' smile..." The nature of the struggle changed as they hit seven. We moved from the physical 'doing' to the mental 'managing.' This was the era where they really started to gain independence. They could find their own snacks and, more importantly, they started to see my physical needs without me saying a word. They became my 'little helpers,' naturally closing the gaps because they’d grown up watching me navigate the world differently.

But their social and extracurricular lives exploded.

Every week was a cycle of dance classes, rehearsals, and the high-pressure buildup to exams. I remember the physical challenge of those long waits—sitting on hard plastic chairs in drafty halls, my neck and pelvis screaming for the recliner, while I watched them perfect their steps. The pride of seeing them succeed in those exams was immense, but the 'invisible cost' to my body was real.

Every weekend was a birthday party in a soft-play centre or a house that wasn’t designed for me.

This is where my bandwidth was truly tested. The sensory overload from the parties and the loud music of the dance studios was immense.

I remember leaning heavily into my £20 coffee budget during these years. It wasn't just about the drink; it was the twenty minutes of stillness I needed to reset my nervous system after a chaotic party or a long afternoon at the dance school. I had to learn that saying 'no' to some social things was the only way to say 'yes' to my own health. We found our rhythm in the middle ground—less lifting, more coordinating.

love

The Rigid Years: Navigating the School Bell with CP

 

Dear diary 

It's now January 2026, and I'm looking at my calendar for this January, with all the medical appointments and 'face maintenance,' I can’t help but think back to when the little ones were five. Back then, a calendar this full felt like a battlefield.

​Ages five to seven were the 'Rigid Years.' Everything revolved around that school bell. For a mum with CP, that bell isn't just a sound; it’s a high-stakes deadline. I remember the anxiety of the school gate—standing there (or sitting in my scooter) and feeling the 'able-bodied' gaze. You wonder if the other parents see the effort it took just to get out the door with book bags and PE kits, while your own body is screaming for a rest.

​My arthritis, especially in my neck, really started to flare during this time. I wasn't changing nappies anymore, but I was constantly bending for stubborn zips and laces.

I had to be a 'Logistics Queen.' If I didn't plan the morning with precision, I’d be spent by 10 AM. I remember 'Floor Time'—wanting to be down there playing, but knowing that once I was down, getting back up was a mountain to climb. I learned to use my 3-Fold Breath on the mobility scooter after drop-off just to survive the morning. I wasn't the 'active' mum, but I was the present one." Saying yes and no, and you'll have to wait until the time is right.

While also ensuring I tried to space things out so I didn't have to go to bed too early and could have grown-up time.

Love