A Day In My Life As A Disabled Mother

I am a mother.  I am disabled. I am sometimes a disabled mother.

Sitting on my lap, looking at dinosaurs.

Isla went back to nursery school today, after mid-winter break.  I enjoyed having her home for three days.  I’m also enjoying being able to write this post in silence, without cartoons in the background, while she is at school.

This morning we had our usual cuddles with TV and waffles before what Isla calls ‘the team effort’ to get her dressed.

She’s hopping around, pulling her jeans up.  ‘Do you want some help?’ I asked.

‘No, Mummy.  Sometimes I need help and sometimes I don’t.’

‘Well, OK.’

And I’ve since been thinking of that line as a metaphor for my life as a mother who is also a wheelchair-user.

Sometimes I need help and sometimes I don’t.

On Tuesday, I took Isla to the park.  My PA pushed her on the swing.  I watched.

‘Mummy, move so I don’t hit you with my feet,’ said Isla.  I ducked. Isla laughed.

‘You’re funny, Mummy.’  We’ve moved on from ‘Mummy funny’, but the idea is still the same.

Isla ran over to the slide, climbed up the steps and wanted to slide down the slide backwards.

‘No, sit forward, please,’ I said.  Because I’m her mother.  And she turned around, because sometimes she listens to me.

Then there was the spinning dish thing.  Spun by me and my PA.  I have two, sometimes three of those.  Isla has a bunch of groovy ‘Aunties’.

I am her mother.

My PAs come in my house and help me Isla-wrangle.  They do the laundry because I can’t freely access the machine from my wheelchair, they wash the dishes when it’s my turn because I can’t drive under my kitchen sink.  They make Isla’s lunch sometimes because my sandwiches are abstract.  

And they help Isla in the bath, unless she lets me hose her down in the shower. But she’s a kid, not a car.

My PA (one a day) drives me to Isla’s school at pickup time and is there at the gate when she runs out.  If we get there early enough and the ramp isn’t blocked by another car, I can get out, too.

Sometimes, parents go in to see the kids work.  I drive through the door and Isla runs to me.

Because I’m her mother.

She’s lifted into the car and buckled into her seat by someone else.  Someone I trust, someone I could not do this gig without.

I understand that I need help to cut tomatoes and tie shoes.

Isla understands.

I accept it.  Sometimes I hate it, but I accept it.

It’s an interesting thing, accepting help for your everyday life.  I need help to shower,  OK.  But I also need help out and about with my kid.  At home, too.  Because there’s only so many times we can venture to the library and the park and the ball pit, before the loop gets boring.

So we do the loop and come home and play with Lego.  In an ideal world, after Isla makes me a coffee shop, we make a game of picking up her Lego with my grabber, which I use to reach things on the floor.

In our world, Isla pretends my grabber is a bionic arm which she plays with and hides in her room.  I’m digging around to find the grabber to pick up the mess in my own house.  While I’m in Isla’s room, my lovely PA picks up the Lego.  That’s kind of embarrassing.

It’s weird to have people glimpse your real and messy and loud life.  Especially when you actually asked your kid to pick up her own Lego, right before she screamed at you and stomped off.

That was us today.

It was easier for me when Isla was, well, shorter.

When Isla was a newborn, we had a crib that attached to my side of the bed.

I wore her in a sling, and then a baby-carrier.  All the wonderful/freaking time.  That worked until she learned to climb.  We switched the carrier to face the world, and she would quite happily sit on my lap.

When she wanted to walk we tried reins for about 5 minutes.  They didn’t work, and I still hate them.

Neil and I have taught Isla to hold my hand when we’re out, or to always walk so when can see each other.  We play the stop/go game.  If she’s ahead of me, sometimes I say ‘eyes’ and she turns to me and walks back.

That’s how we roll.  It works.  Like every family, we have our own way of doing things.

Isla understands that some mothers are walkers.  Some are on wheels.

When she started at her new school she was playing with another kid who asked her why I was on wheels. ‘She’s just my Mummy,’ said my girl. I can do more in my chair than out of it, when Isla doesn’t hide all my helpful equipment.

I do get some help from PAs, but Isla knows where she gets love and cuddles, and a telling off when she goes down a slide backwards.

I’m her mother.

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More recent adventures in motherhood on wheels can be found here.

Sitting on my lap, looking at dinosaurs.

Also published on Medium.