Sally Darby is mum to two daughters and has multiple sclerosis (MS). She tells us about parenting with a disability, her experiences with NCT and why she set up an online network, called Mums Like Us, so mums in a similar situation can support one another
I live in the Midlands with my husband, Peter, and my two daughters, Alice and Lucy. Alice is four and starting school in September. Lucy will be one in July.
They are hilarious, beautiful, clever, brave and very strong willed. I adore them and admire their confidence. They certainly keep me busy!
I have multiple sclerosis (MS). It’s a complicated condition and affects people so differently. For me, it started by attacking my vision.
I am severely partially sighted and have been since 2008. I can walk but my mobility is considerably affected.
I don’t like to think of myself as a sufferer. I try to think all of us have our difficulties and this is mine. I live with it, as we all live with the things that complicate our lives.
I feel really lucky to have met such excellent, strong women through NCT
I had friends with kids but they didn’t live near me. I knew my husband and I would both benefit from some guidance about life with a baby! The practical help was really useful.
The biggest thing I gained was an amazing group of friends. There are five of us mums who are really close.
Our kids are best friends, we go out together, go away together and support one another. They are a really genuine and lovely bunch. Their husbands are great too!
Having Alice was the best thing I had ever done, but it was hard adapting as a disabled mother.
Due to my vision, I can’t drive. This limits things I can do.
I had to work out ways of getting around (often getting lifts with my NCT friends!)
I had to figure things out. For example, the house we were renting at the time had no bannister and I was scared of carrying Alice up and down the stairs. I bought a baby carrier and used that instead.
When she was older I used to sleep in the living room with her if my husband was away and couldn’t carry her up and down the stairs.
I had to learn to ask for, and accept, the help of friends and family.
When Alice was six months old I had a fairly serious relapse. I could barely walk. It was a hard time and I was very emotional and scared about the future.
Thankfully, I was put on some new medication which has kept me stable, with the help of lots of physiotherapy.
Deciding to have Lucy was a big thing for us. My consultant and MS nurse were really supportive and helped me plan around my medication. I came off the medication when I got pregnant.
Pregnancy this time was harder than the first. I had symphysis pubis dysfunction (SPD), which is severe pelvic pain on top of other symptoms.
I needed lots of physio to help me get through it, but I did and it was so worth it!
Strangely, the early days with Lucy were easier than they’d been with Alice. I was much better prepared for the challenges I’d face.
I had a lot more confidence second time around. I expect this is common amongst parents.
There’s a lot of judgment about the ability of disabled people to parent
I have spent a lot of my life worrying about what other people think of me. This was never greater than as a new, disabled mother.
I worried that people thought I shouldn’t be having children, or that I couldn’t do it.
But I have come to the conclusion, particularly since starting Mums Like Us, that the vast majority of people are really kind and supportive.
I have an awesome and varied group of friends and a wonderful family who I am very close to. But I didn’t know anyone who was parenting whilst dealing with the additional challenges of physical disability.
I was at a session about disability and activism at the Women of the World festival in London and hadn’t planned to ask a question, but did so on impulse. I was mortified when I started to speak and realised I was crying!
I explained I was a disabled mother and asked if anyone knew of any supportive networks as I felt alone and judged a lot of the time.
Nobody knew of any online or physical spaces for disabled mums to share experiences and support each other.
I mooted the idea of Mums Like Us with my husband and close friends and they reacted positively. I had a strong feeling there must be other mums who felt the same as me about needing space to talk.
I want Mums Like Us to be supportive, friendly, optimistic and honest
I want to create a safe, non-judgmental, positive community.
I’d like it to be somewhere people can discuss the challenges of parenting as a disabled mother.
And I’d like it to be somewhere we can pick each other up when we are feeling down.
In the future I’d love to find a way in which we could support people more practically, through fundraising and events. But it’s early days.
Parenting is hard and motherhood is exhausting! We are tired, guilt-ridden, self-conscious and scared. This doesn’t mean we are not elated and in love and energetic, but there is a lot going on for us all.
Having people who you can text or message on Facebook at three in the morning or when you’re shattered is so important.
It’s also great that we can be so happy for each other and cheer each other on for being excellent and doing the mothering thing so well.
I would just say not to panic. Take it one day at a time. Don’t worry about the next stage as you’ll figure it out as you go.
You can do everything you need to do by adapting traditional parenting methods.
We have a unique and valuable experience which can be a really positive thing for our children.
As long as you are acting out of love for your kids you’re doing the very best thing by them.
‘Think outside the box. The norm for able-bodied people may be different for you. Make the way you do things work for you. Use any aids and adaptations that enable you to do as much as possible yourself. Remember you are a mother first and your child will always love you, no matter what.’ (Rachel)
Don’t worry if you have to ask for help. You are doing brilliantly but sometimes we all need help and support so don’t be afraid to ask
(Alison)
‘At times you’ll feel tempted to think you’re a “bad mum” compared to other mums. But never forget you have something they don’t – a unique opportunity to teach daily courage, perseverance and patience in a way other mums can’t. This is your greatest opportunity as a disabled mum. Don’t waste it!’ (Bree)
Positivity, love and honesty will see you through
(Freya)
Mums Like Us
This is a new Facebook group that provides a community online for disabled mums and mums-to-be. Follow the group on Facebook
NHS support
Help is available from your local authority for disabled parents. Click here to find out more.
Change
This human rights organisation is led by disabled people who are working to build an inclusive society. Read more here
Deaf Parenting UK
An organisation with information for deaf parents and professionals working with deaf parents. Click here to find out more.
