The Lens I Can’t Take Off

Having a baby last year has been an absolute whirlwind. She’s almost one now, and the love I feel for both of my girls is so intense. Sometimes I wonder what I even thought or talked about before they came along. I feel so lucky.

One thing I didn’t expect, though, was how much I would miss Amy being this small — and how different the world feels now that I’m a mum to a baby again.

Amy’s start in life was very tough. She was born unexpectedly poorly, sustaining a severe hypoxic brain injury at birth, which led to cerebral palsy. Her early days were full of medical interventions, endless appointments, and inconsolable crying.

It was harrowing at times.

I’ll never forget one baby group we went to. I felt people’s eyes on us — maybe it was her feeding tube, maybe the crying, or maybe the fact that nothing there was suitable for her to play with. I ended up pacing the room, not knowing what to do. When I left, my face burned with sadness. I held back my tears until I got home. It felt like we didn’t belong.

After that, I only went to groups where other children with disabilities were present. Looking back, I wish I hadn’t let that one bad experience close doors for us.

Now, Amy is 11 and her sister Ella is 11 months. When I’m with Ella, the world feels like an entirely different place.

Yet I still see everything through the lens of being Amy’s mum.

At every play group I think: how could this be made more accessible? Parents here can just show up with nappies, milk, and snacks — and I feel a pang of guilt that I didn’t fight harder for Amy to have the same. But then I remind myself: I did the very best I could at the time.

Sometimes I wish I could go back and do it all again, knowing what I know now. Amy was who first taught me how to be a mum. We were learning together, scrambling, grappling with a whole host of extra things most parents would never have to consider.

She taught me how to be resilient in ways I didn’t know possible. I just wish I had treasured her little baby body in arms a bit longer. But I suppose I may do that again with Ella. Hindsight is a funny thing.

The last time I took Amy to a soft play centre, we ended up in an argument about why her wheelchair wasn’t allowed in the sensory room. We also couldn’t park because people without a blue badge had taken all the disabled bays.

It was infuriating. It often feels like people just don’t care, or don’t understand. I took Ella to the same play centre recently. Part of me thought I shouldn’t — but why should she miss out too?

Even little things get to me.

At a swim session with Ella, the instructor told parents to “feel free to use the changing places toilet to change your baby.” Yes, there’s a baby change table there, but those facilities are designed for people who need a hoist. What if someone had needed it at that moment?

I stayed quiet because sometimes I need a break from advocating. Advocacy is exhausting, and too often it makes you look like you’re moaning. I’m learning to pick my battles.

I keep seeing adverts for days out, only to find there’s no wheelchair access. Sure, we could go when Amy is in respite. But should we give those places our custom? Why, in 2025, do so many venues still only cater for the mainstream?

Why do families like ours still have to meticulously plan every trip, comb through accessibility statements, and roll our eyes at lines like: “We’re fully wheelchair accessible… except for one step.” News flash: that one step means you are not accessible.

So on I go — juggling grief, regret, pride, excitement, gratitude, anger, and just about every other emotion you can name.

But above all, I carry love.

Love for both my girls, who teach me every single day how to see the world differently.

Going forward, I plan to work on striking a balance. Regular fun activities with each child separately, and then fun things as a whole family we can enjoy together. My main goal is for both to feel they are entirely loved, and that we are giving them the best lives possible.

It’s so easy to feel like you are failing and not doing enough… but I read recently that anyone who agonises over these things is showing how much they care. It’s the people not tormenting themselves that need to worry!