Here is another fantastic blog post from our Friend, Tallulah, who has written about having ataxia and being pregnant. This article was shared in support of Rare Disease Day 2025.
“I’ll never be a mum,” I cried as the tears rolled down my cheeks.
This was the first thing I said to my neuropsychologist and that would be the theme for the next hour.
I can’t believe it’s now been seven years since I was diagnosed with ataxia. Seven years since my whole world turned upside down.
There I was, a girl whose dreams of being a mum had been shattered in an hour’s hospital visit, a grief-stricken shell of a young girl, who, in that very moment, was questioning her mere existence. How was I going to care for a child? For a baby? Would anyone even want me as a mother now?
The thought of not being able to carry my own child, to run around with them at the park, to scoop them up when they fall over, was enough to shatter my dreams entirely. Would they see me as the boring mum or even worse, an embarrassment?
Not only did I think I would never be a mother, but that no one would want to start a family with me.
Now I feel lucky to be loved by my partner, someone so kind, so caring and so considerate. But I reckon, and he reminds me often, that he’s pretty lucky too.
My disability has made me the person my boyfriend fell in love with, the person that our daughter hopefully will fall in love with too.
A learning curve
Don’t think my heart doesn’t break a little bit every time I see a “normal” mother do the things that I’ve always longed to do. A lump in my throat still forms every time my little cousins ask me to pick them up and just don’t understand why I can’t.
Don’t think that I’m not fighting the urge to cry just looking at someone hold a baby whilst standing up. But I’m learning to accept the way things are and focusing on what I will be able to do. For example, I’m hoping to use her Pram as mobility aid went out and about with her.
Cuddles and bonding will take place on the sofa or a chair. The love I feel for my unborn child fills me with the confidence that they will feel absolutely adored every second of every day.
I’ve learnt to ignore the useless comments that I’ve had over the past few years, such as “but how will you manage?” or “you’ll need a lot of extra help; you know that right?”.
All I’ve ever dreamed of was becoming a mother, raising my family, running around with my own little mini-me. Partly my own dream, partly society’s.
Society expectations
Society puts a lot of pressure on women, including becoming a mother. That’s our role, right? I won’t lie, I’ve made the mistake of feeding into this ideology of asking someone if they want children.
I look back and am embarrassed about how insensitive that question is. Maybe they can’t, maybe they’ve lost a child or maybe they just don’t want to. And that was none of my business.
Ever since I can remember I have always been told I’d be a great mother, so I’ve always just gone along with it. Never questioned or doubted it. I love children, so of course I’d be. I was born to be.
Since being diagnosed I carried on this narrative of never stopping to ask myself ‘but is this what I really want?’. That was until earlier this year.
Did I want to be a mum with a disability? Was it fair to me or the baby? Would society judge me?
I was brainwashed into focusing on the things I can’t do instead of the abundance of things I can. I’d much rather have my child remember their mother as being affectionate, nurturing, and supportive than whether or not I could run around a field with them.
A fully grown adult
A lot of disabled people are infantilised. We are often patronised and spoken to in a condescending way. We are often regarded as less capable because of our disability, applauded every time we achieve something our able-bodied peers can do.
Disabled adults may be made to feel like we don’t belong in the grown-up world. Sometimes the news that I am with child comes as a shock. How can that possibly be? Watching peoples’ facial expressions when I tell them has become a new hobby of mine. However, I think being pregnant has made people see me in another light. When I relay with conviction how I am planning to care for my child I feel empowered. I enjoy telling anyone who will listen because I feel like it gives me more credibility as an adult.
This is something I hope carries on into motherhood. Maybe I’m hoping that motherhood will legitimise me in a way.
I just hope they don’t give me a sticker and tell me I’m inspirational for giving birth.
