I’d always wanted children. Growing up it was something I always knew I wanted in my future. Having a degenerative muscle wasting disease (SMA) causing me to be in a wheelchair from age thirteen; causing a severe curvature of the spine made this dream an unlikely reality.
Disability and Parenthood
I’d attempted numerous times to speak to various doctors and consultants about the possibility of me having children, and the reactions I received were usually one of utter bewilderment. At one point, being laughed out of the room.
It’s not something I ever wholly gave up on. My mother and sister both have my condition, and they coped with motherhood valiantly. But I am smaller and have been significantly more unwell than they have in my past. So while it was a source of comfort knowing they managed, it didn’t offer me much in the way of actual concrete knowledge. But there was always something in me that said that I’d cope. I’d be fine. It’s something I can do.
I found out I was pregnant on the 16th of November 2018. It came as a shock. I’d been to the doctors a month prior to discuss trying to get pregnant, only to be faced with, ultimately baseless assumptions that I would struggle to conceive.
I was told that it would take me a long time and that I would qualify for IVF after six months of trying. The GP actually said to me during this meeting that she didn’t know anything about my condition, she actually had to google the symptoms of what I have. But she decided to give me this advice anyway. Despite it being ultimately useless.
Pregnant and With a Physical Disability
Finding out I was pregnant my initial response was one of both unadulterated joy and complete paralysing panic. Having been told by various people that my body was not equipped for such a thing for so long, I was utterly convinced it would go wrong.
This couldn’t happen. My body will let me down. Don’t get too excited. This won’t last long. You can’t do it.
To be honest; this way of thinking lasted throughout my pregnancy. It definitely put a black cloud over my experience. I was too scared to do anything. Move. Think too much about my little boy growing inside my tummy. My anxiety was at an all-time high. Before every midwife appointment, every scan, every trip to the hospital, I was preparing myself for bad news.
It frustrates me to no end because my pregnancy was perfect. Textbook, if you like. He grew at the right rate. He was always happy and snug and being exactly as he should. I didn’t even get morning sickness. As I got further along my mobility reduced. I was tired, irritable, enormous, fed up. Everything a mother in her third trimester should be! And yet I was burdened by this unbelievable panic.
It makes me think how wonderful my experience could have been if I’d have had the right words. The right advice. The right encouragement, from anyone in a position of authority. But they didn’t know any better than I did. All they could go on was their own assumption and their own prejudice.
I got a few negative comments while I was pregnant, as I still do now my son is seven months old. A consistent one from everyone was assuming I wouldn’t cope once he was born. “How are you going to do this? How are you going to do that?”
Anyone that has experience of disability knows that you rarely know how you’re going to adapt something till you’re faced with it. You know you can do it. You’re not sure how yet. Which was exactly my response when asked this intrusive question from people I barely know. At which point, I was accused of burying my head in the sand.
Becoming a Disabled Mum
My son was born on the 17th June 2019 at Leicester Royal Infirmary via C-Section. I was in the hospital for two days and then we came home to start our life as a family unit.
I was lucky, my partner managed to have a whole month off work to help me as I was recovering. And he was magnificent. That month we existed in a truly blissful bubble. And when it came to an end, I was genuinely terrified that everyone that said I couldn’t do it was right.
What would I do? How would I cope? What will happen if I can’t manage?
I think these are questions most new mother’s experience when faced with the enormous task of keeping a tiny human alive. But for me, my insecurities were being reinforced by society.
That first day of just me and Oscar was eye-opening for me. Not only did I manage. I flourished. It was like I’d found what I was put on this earth to do. And as he grew older, bigger, more wiggly, we’ve only found more ways of dealing and coping with our day to day. It’s about small adaptions.
I put him on my lap and shuffle on my bum to get us downstairs in the morning. I use a baby carrier instead of a buggy. He helps me get him out of his cot and put him in and out of his walker by being good and patient and accepting it takes me a little longer than when Daddy does it. He’s grown up knowing no different. And I love the relationship my son and I have.
Changing Peoples Perceptions Of Being a Disabled Parent
I started an Instagram account (mumsonaroll) dedicated to showcasing how our lives are not so different from any new mum at home with her child. I thought about what I would have liked to see and hear during my pregnancy. What would have made me feel better and comforted? I’ve shown how we do things in the hope of replacing ignorance with knowledge.
I still get assumptions made about me. I still get told I’m not like everybody else. I still get told that I can manage now, but I won’t in the future.
But ultimately, every mother is doing her best. Winging 80% of her day. Having fun. Going crazy. And I’m no different. I have good days. I have bad. But none of them has anything to do with my disability.
Molly has Spinal Muscular Atrophy (SMA) and is a manual wheelchair user. In 2019, Molly became a first-time parent to a beautiful baby boy. Molly shares what it’s like being a disabled mum and has set out to change peoples perceptions of what being a disabled parent means. To follow Molly and Oscar as they live their day to day and daily routines, head over to Instagram and follow along at mumsonaroll.
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