Disability Life Writing

A Day In My Life As A Disabled Mother

22nd February 2018

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

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.

*

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

 

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Sitting on my lap, looking at dinosaurs.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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86 Comments

  • Reply gemmaorton 22nd February 2018 at 4:32 pm

    Love this little glimpse into your family life!
    Kids are great, they just seem to know and accept. What is, is.

    • Reply Lorna 22nd February 2018 at 5:56 pm

      Thanks Gemma, the behind-the scenes that I planned to write turned into this!

  • Reply johnrieber 22nd February 2018 at 5:02 pm

    Thanks for sharing this…beautifully written.

    • Reply Lorna 22nd February 2018 at 5:57 pm

      Thanks, John. One word in front of the other, ha!

      • Reply johnrieber 22nd February 2018 at 8:00 pm

        Your honesty is refreshing

      • Reply johnrieber 25th August 2018 at 4:37 pm

        Just read this again…already told you how well written it is, but had to add “abstract sandwiches” as my motto for the day!

        • Reply Lorna 25th August 2018 at 4:44 pm

          Abstract sandwiches is my metaphor for life, ha!

  • Reply loristory 22nd February 2018 at 5:15 pm

    If I may be so bold, it sounds like you are not a disabled mother, but a wonderful one who also has physical limitations. I’m loving your posts, and Isla sounds amazing!

    • Reply Lorna 22nd February 2018 at 5:41 pm

      No, I’m OK with being a disabled mother. My CP has little to do with it. I am disabled by lack of access within built environments. Accessibility needs to be improved, not my wheels.

      • Reply loristory 1st March 2018 at 5:26 am

        Oh, I get it now! Thanks for explaining.

  • Reply fancypaperblog 22nd February 2018 at 5:31 pm

    Your post is honest and lovely x Isla is a very happy looking little girl!

    • Reply Lorna 24th February 2018 at 11:10 am

      She’s happy most of the time. There’s also those squash-em things, ha!

  • Reply Rebecca Moon Ruark 22nd February 2018 at 5:43 pm

    What a lovely post–thank you! I loved putting my boys in a wrap when they were little, holding them close. Once they were really mobile I thought about getting a twins’ “leash”–the term “reigns” is nicer–but decided against it. We all do what we gotta do, right? Isla is a lucky little girl.

    • Reply Lorna 24th February 2018 at 12:00 pm

      Leash/reins, same shit different name. 😉

  • Reply bluerosegirl08 22nd February 2018 at 6:39 pm

    It is obvious you love her and that is what is important,, not who picks up the Legos. If it helps I will be in a similar sitation when I have kids since I live on wheels too.

    • Reply Lorna 24th February 2018 at 11:42 am

      I know it’s not about the Lego, ha. I’m just sharing my work-arounds.

  • Reply thebeasley 22nd February 2018 at 6:42 pm

    Well this is all kinds of wonderful. As are you and your daughter ?

    • Reply Lorna 23rd February 2018 at 11:48 am

      Isla is wonderfuller than me. 😉 Will you be at the Bash? x

      • Reply thebeasley 23rd February 2018 at 11:50 am

        I’m really hoping so, but not altogether sure yet. Fingers crossed. Would be lovely to see you x

        • Reply Lorna 23rd February 2018 at 11:54 am

          YAS! Fingers and eyes crossed. Cuz y’know, I can do that, too. We must get our matching hair in the same photo. xox

          • thebeasley 23rd February 2018 at 12:03 pm

            Oh we must! It would be glorious x

  • Reply Gill 22nd February 2018 at 7:01 pm

    Lorna, that’s a lovely post. Think I’m going to do a ‘Day In The Life’ one too. I don’t have a three-year old any more, but I do have a 70-something husband!

    Always remember that, to Isla, her life and you and your PAs are ‘normal’ for her. She sounds absolutely delightful! I know what you mean about the helpers though. Although I’m not ‘on wheels’, I have my own health problems and have a Housekeeper to keep us clean and tidy, and a gardener to keep the weeds under control, but I hate the fact that they see what a ‘slob’ around the house I am!

    Love to you and Isla xx

  • Reply josypheen 22nd February 2018 at 7:35 pm

    Brilliant post.

    My mum was in a wheelchair for yeeears. It never seemed like a biggie. It just was the way thing were. I bet Isla will be better at pushing your chair than I was as a child (although I guess you don’t need it with an electric chair!?) I knocked my mum into sooo many peoples ankles. (Oops)

    p.s. I love the sound of your abstract sandwiches.

    • Reply Lorna 24th February 2018 at 11:06 am

      My fave is deconstructed sandwhiches. All the stuff on a plate with the bread/bagel on the side. Did you and your Mum have a point system for ankles? We do.

      • Reply josypheen 25th February 2018 at 1:01 am

        Hahaha! No, I wish she had.

        Occasionally (if I am being completely honest) I’d run into people’s ankles deliberately if they ignored my “excuse me”s Some people can be so oblivious to their surroundings they have no idea when they are blocking the only possible route for wheelchairs. That used to annoy me, but mum never seemed to mind.

  • Reply Jackie Cangro 22nd February 2018 at 7:37 pm

    A wonderful, moving piece! Thank you for offering this peek into your daily life.

    • Reply Lorna 23rd February 2018 at 5:52 pm

      Thank you, Jackie. Just trying to tell it like it is.

  • Reply Beth 22nd February 2018 at 8:29 pm

    Beautiful. You are her mother and you are a wonderful one at that.

  • Reply You Can Always Start Now 23rd February 2018 at 11:09 am

    Best part of blogging getting a glimpse of people’s lives. Putting it out there you are not alone and showing how! Thank you.

  • Reply angelanoelauthor 23rd February 2018 at 2:50 pm

    I read this and felt all the love of motherhood. And the love of your Isla for you. I also liked the day-in-the life tone: Some days you get out of the car and some days you don’t. That’s the way of things.

    • Reply Lorna 23rd February 2018 at 5:51 pm

      We seem to have a mutual appreciation society going. And I always enjoy your comments.

  • Reply Kerry LifeandLoves 23rd February 2018 at 5:26 pm

    Ahhhh I really enjoyed this post, a little glimpse of what happens in your home. Kids are amazing, accepting and wonderful little things eh? Have a great weekend xx

  • Reply anhistorianabouttown 24th February 2018 at 11:50 am

    Sometimes kids have the most lovely way to think about things, entirely free of judgement! As adults we pass judgement on ourselves and it is refreshing to change our mentality ☺ I hope you have done wonderful plans with Isla this weekend!

    • Reply Lorna 24th February 2018 at 12:24 pm

      Yes, going to check out a bookshop that should have improved their accessibility by now. 😉

  • Reply Ritu 24th February 2018 at 11:58 am

    I applaud you and other disabled mothers out there. It’s a tough gig for able bodied folk so for you to do EVERYTHING for your for your child (albeit with help) is wonderful x

    • Reply Lorna 24th February 2018 at 12:22 pm

      I just love my kid like every parent should.

      • Reply Ritu 24th February 2018 at 12:26 pm

        You do, I know ?

  • Reply thatblogwherecheriemovestogermany 24th February 2018 at 12:12 pm

    I loved reading this, it’s like getting to look through a little window into your life. (I mean that in a non-creepy stalker kind of way).

  • Reply Parul Thakur 24th February 2018 at 1:02 pm

    Lorna, I loved your post. The love that you have for Isla and how you described in through the day was a beautiful glimpse into your life. I felt I was there with you having fun and cuddle with your girl. hugs! <3

  • Reply SickChristine 24th February 2018 at 1:14 pm

    I read this last week, but I was in such a stupor over my own stuff that I couldn’t find the words to comment on it. This is, without question, one of the most beautiful pieces I’ve ever read. You are more than just a stellar writer, you’re one hell of a woman.

    • Reply Lorna 24th February 2018 at 6:07 pm

      You made me cry on the internet again, Christine.

      • Reply SickChristine 24th February 2018 at 6:08 pm

        Yes! My work here is done.

        • Reply Lorna 24th February 2018 at 6:13 pm

          You’re not done by a long shot, my friend.

  • Reply Carol Cassara (@ccassara) 24th February 2018 at 2:19 pm

    I love how you took your daughter’s wise comment and applied it. Out of the mouths of babes comes true wisdom.

  • Reply susielindau 24th February 2018 at 2:38 pm

    I had no idea, Lorna! You are doing a fantastic job! Wow!

    Yesterday I ran an errand in Boulder. A man in a wheelchair rolled himself out of REI with a bag on his lap. My impulse is always to help people, but when he arrived at his van, he had a system for getting inside and driving. I kept thinking about how hard it would be if something was just out of reach. I figured he’d make eye contact if he needed a hand. Considering where we live, he’s probably an Olympian! My point is we can’t assumptions.

    • Reply Lorna 24th February 2018 at 6:11 pm

      Thanks, Susie. Not exactly quiet about it. And the wheels are in my bio at the end of every post. Here I thought I was repeating myself.

  • Reply rachaelstray 25th February 2018 at 9:23 am

    A really honest post Lorna. You’re right that it isn’t your wheels that needn’t improving but accessibility in general. There’s still many buildings which don’t have ramps or lifts or anything accessible at all and in 2018 that is ridiculous.

    • Reply Lorna 25th February 2018 at 9:34 am

      Thank you for understanding that I don’t write for kudus, but to highlight the need for change.

      • Reply rachaelstray 25th February 2018 at 9:35 am

        Absolutely and unless we make a noise change won’t happen!

  • Reply Christine @ The Eco Lifestyle 4th March 2018 at 7:58 am

    You are wonderful and funny! I have to be funny to make my littles pay attention…otherwise….I am just mom! And no one listens.

    • Reply Lorna 8th March 2018 at 11:09 am

      I’m apparently so funny that Isla knows when I’m not joking. Those times are when she gets her full name as well, ha!

  • Reply Sonia Cave 8th March 2018 at 5:49 pm

    I love the humourous twist you put on your very important message. I like idea of groovy “aunties” too. You manage so much and both of you have found ways to make things work for the 2 of you together, because you know each other…and you are her mother

  • Reply BattleMum 8th March 2018 at 6:34 pm

    Thank you for sharing this glimpse into your life. It’s made me understand more about the difficulties people with disabilities face. And how understanding and matter-of-fact children are too x

  • Reply Laura Dove 8th March 2018 at 10:25 pm

    Thank you for the glimpse into your life, I love that you are able to live with humour and positivity.

  • Reply Deborah Nicholas 9th March 2018 at 11:00 am

    What a gorgeous girl you have there and thank you for the peek into your life.

  • Reply dearmummyblog 9th March 2018 at 12:29 pm

    You sound like an awesome, caring, strong mum! It’s clear your little one adores you. We love the way you explain things and it made us giggle about hosing down a car. My mummy can’t bend down, so can’t wash me in the bath, so uses the shower hose. Thanks for the glimpse into your life and I can feel the love radiating from this post x

  • Reply motherhoodtherealdeal 9th March 2018 at 2:53 pm

    Such a lovely honest post thanks so much for offering us a glimpse into your life as a disabled mum.

  • Reply Sara-Jayne Jones 9th March 2018 at 3:02 pm

    Thank you for letting us into your life. Your little one is gorgeous and it always makes me smile how practical they can be about people. They love us the way we’re supposed to be loved by everyone in our lives – completely and unconditionally; they take us as we are. For that I’m eternally grateful.

  • Reply Steph Renovation Bay-Bee 10th March 2018 at 6:30 pm

    Really interesting to hear about your life as a mother, every family has their own story and each story is very special

  • Reply rachaelstray 11th March 2018 at 10:04 am

    Wishing you a very happy Mother’s Day today!

    • Reply Lorna 11th March 2018 at 10:43 am

      Thank you, Rachael! x

  • Reply Candace 11th March 2018 at 11:38 am

    Such an inspirational post. You are rocking this motherhood lark x

    • Reply Lorna 11th March 2018 at 11:46 am

      Thank you, Candace! But easy on the inspirational, I just do what I do. <3

  • Reply Flossie 11th March 2018 at 11:44 am

    Loved reading this, Lorna! I have different health troubles that have meant several long stints on crutches, not driving, and/or otherwise not-fully-able-bodied since becoming a parent. The kids have been great about adapting, but it was still frustrating – the entire time my baby was in K (which in our district is half-day) – to have to constantly arrange other people to take me to pick her up, because my hubby was at work and I couldn’t drive. Keep on truckin’, Mama!

  • Reply Denzil 11th March 2018 at 1:47 pm

    Thanks for this honest and courageous glimpse into your life Lorna. You are truly inspiring.

    • Reply Lorna 11th March 2018 at 6:27 pm

      Thanks, Denzil. This is just my regular person life.

  • Reply J | thenellybean 11th March 2018 at 4:21 pm

    This is so beautiful, I love how you’ve described all the little things and make them sound so simple, but it’s often the simplest things that are the most remarkable. Also Isla is such a gorgeous name! xx

  • Reply Suzanne [globalhousesitterX2] 11th March 2018 at 6:21 pm

    I loved working with preschool children, and your comments have reminded me why I did. You are both very fortunate to learn from each other and have each other. Lovely Lorna!!

    • Reply Lorna 11th March 2018 at 6:28 pm

      Thanks Suzanne, Isla is the best. And just so much fun.

  • Reply Kara 12th March 2018 at 5:53 pm

    I love that kids just accept that some people have to do things differently and just get on with it. Us adults can learn a lot

  • Reply laurasidestreet 12th March 2018 at 6:27 pm

    I really found this a very interesting and inspiring read – It was fascinating seeing a glimpse of your daily life and how it looks to you and your daughter – you’re such a great mum and Isla is lucky to have you.

    Laura x

  • Reply Ellen @ If It Brings You Joy 10th July 2018 at 2:41 am

    Through your writing I get to see a perspective that I otherwise would miss out on. Thanks for sharing!

  • Reply Mary Meier 24th July 2018 at 7:50 pm

    You are doing a GREAT job!!!!

  • Reply OurFour Suitcases 23rd August 2018 at 8:04 pm

    You probably had more opportunity to bond with Isla as an infant in your arms than I had with the twins tag teaming me. I always envied mothers that got that amount of one on one bonding time. I read an article the other day about how babies that spend more time being held are more emotionally stable as young children and it made me wonder if my kids got ripped off a bit because they had to share that time and because I had to return to work and put them in daycare at 5 months old.

    • Reply Lorna 23rd August 2018 at 8:11 pm

      She was rarely off me in a way that I miss now. Twins run in my husband’s family and also mine, so next time could be a twofer, too, ha!

  • Reply Susanne Swanson 23rd August 2018 at 9:58 pm

    I love this window into your life as a disabled mom. And your daughter sounds awesome!

  • Reply robbanybarton 23rd August 2018 at 11:28 pm

    Real life is sticky and messy and fabulous and terrible. Every one of the ‘Aunties’ has a real life and gets it (if not, sack their asses!)
    You are her mother and she will always see you for you not anything you wore or rode or grabbed things with. You are incredible and she knows it. I am glad to see you do, too!

    • Reply Lorna 23rd August 2018 at 11:43 pm

      OK, so I suck at taking compliments. But I feel like I need to hug you. <3

      • Reply robbanybarton 10th September 2018 at 2:31 am

        (((hugs)))

  • Reply Janet Givens 8th September 2018 at 2:01 pm

    A lovely reminder of so much I take for granted. Thank you.

  • Reply This Vulnerable Life 29th September 2018 at 9:11 pm

    ‘Sometimes I need help and sometimes I don’t’ – wow. Words of wisdom from a young girl. I loved that and love this post. Thank you for sharing a glimpse into your world as a mother. I’m so glad I came across you from Susie’s party x

  • Reply Susanne Swanson 15th November 2018 at 7:16 pm

    I still love this post! Thanks for sharing a precious part of your life with us. 🙂

  • Reply Debbie Harris 15th November 2018 at 8:55 pm

    Such an insight into your life as a mother. Isla is so cute and your mother/daughter bond is palpable through your amazing words.

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