Guest post by the Mums Like Us Community
As a mum of two girls and a woman with MS, a severe visual impairment and significant mobility issues, I know what it is to be a disabled mum. I am conscious, however, that I cannot speak for anyone but myself. I know how disability and parenthood have played out for me, but I am only one person among hundreds in my Facebook group – Mums Like Us – a network for disabled mothers. All of these super mums have their own stories to tell. I decided to open this one up to them. So in the following list of ten things I want you to know, I will quote women (with their permission,) to show you what we want you to know…
“Can we go somewhere today?” is one of the most heartbreaking things I hear. Almost every day!
Can we go out today? Sorry darling my back is too painful, sorry darling the sciatica is back, sorry darling I can’t see properly today, sorry darling I have a migraine, sorry darling I can’t feel my arms.
It makes me feel like a failure as a mother, as a human being. And when I do say yes. Yes were going out all day to a festival, that’s it. For at least 3 or 4 days. I can’t move, I can’t move by the time we get home. Still got to cook and serve dinner. Do the washing up. Run a bath, get them to bed. I’m running on painkillers.
And even though they have had an amazing day and you gave everything you have,
The first thing you hear the next day…. “Can we go somewhere today mummy?”
1. I’m working my socks off to keep the show on the road
2 I researched carefully before having kids, genetic counselling etc and tried to think through challenges I faced before I had kids.
3 my kids don’t see my disability but yours will – educate them to smile rather than stare and that questions are ok!!
4 I’m knackered ALL THE TIME and yes I know all mums are but getting out of bed on a morning, getting dressed and getting out the house are all physically draining exercises. So I’m more tired than you ok?!
5. If I’m grumpy see 4!
6 my kids are amazing and I’m so pleased I’ve had the opportunity to be a mum
Mums might look like they’re doing ‘fine’ but deep down we pay a price for every push of that swing!
I mastered the best poker face when I became a parent.
Disabled people can make very good, or even excellent, parents. Our lives aren’t all doom and gloom. We can carry out a lot of tasks, we just might need to do them slightly differently to how someone thinks they should be done.
How left out we in fact are in society! Baby gear, accessibility in hospitals, children’s playgrounds/venues for children to play or even the school events, children’s stores and family vacation resorts is so limited, it’s ridiculous! Plus how we don’t seem to be counted in political issues regarding parenting. I sometimes feel like I’m an alien living on the side of society. And I think only awareness can change that.
So what I want people to know is “HELLO! I’m here! I’m a disabled person AND a mum! I don’t need pity, I just need to be included in your world so I can go to my kid’s dance recitals or football game without having to move the heaven and the earth just to get into the venue!
That just getting to a playgroup is all we can do. That we can’t just do ad hoc trips 40mins away to the zoo unless someone is helping me. That although I try not to bang on about my disability, I do this to try and ignore it, but it does affect me everyday in ways you can’t see. Just because you don’t see it doesn’t make it hypochondria. That a bit of compassion and understanding, rather than ignorance and its arrogance, goes a long way.
- That I’ve got this, I can do parenting without interference. I have a horrible personality trait in which I feel I need to prove this to people all the time.
- That though I’m independent, it’s nice to be given a (non patronising) hand once in a while. Let’s face it, parenting is hard work!
- That I’m not a ‘relaxed’ ‘bohemian’ or ‘soft’ mother because I’m flexible with my children’s routine. There’s a reason I do what I do.
- That I’m not looking for/or expecting special treatment because of my disability.
- That for me and my children, my condition is normal for us. Respect that.
- That it breaks my heart that I can’t do ‘everything’ with my kids, but I’m over the moon I have friends and family who can.
- That I’m well practiced at problem solving and thinking on my feet. Don’t underestimate me.
- That things take longer… A lot longer. Be patient.
- That I don’t regret any of it for a second and I’m actually very happy. I know! Who’d have thought?
- I’d like for people to see how I do the small everyday stuff, the things that no one sees, just to grasp how it is, because it’s constant, it doesn’t go away.
Not all disabilities are physically obvious. For many of us with chronic pain, it doesnt get better. We just get better at hiding it. Taking advantage of a good day could mean days of recuperation. Sometimes weeks.
Simple, basic, normal mom things can be a great hassle. I cant just get up and take my kid to the park. I have to plan it around rest periods, medication, and whether or not the location is even possible for me to trek.
My house is a mess. Get over it. I have to rest a lot so the time I am up, I do as much housework as I can but its not enough. I also choose to ignore it some days so I can spend my good days with my son. Even if its just making weird faces in the mirror with my 4 year old.
Different not less. We parent differently due to the challenges in our own bodies and the world around us not being built for different abilities. Different NOT less.
Sometimes we are jealous. We see you running in the park with your kids or looking bright eyed and bushy tailed after a long walk, and we just wish you knew how easy you had it. We wish you knew how lucky you are in every step you take. But then we remember that our difficulties may be right there affecting us physically, but we don’t know what is going on for you. We are all in this mothering business and it’s hard for each of us. We need to look after each other, not bring each other down. The online community of motherhood is amazing. I hope that through posts like this, we can all start to view motherhood through diverse eyes. That’s why Mums Like Us exists beyond the Facebook group. The instagram and the website are there to promote the issues faced by disabled mums with a wider audience and ultimately, to bring disabled mums in to the mothering mainstream.