My connective tissue disorder is complicated and it would be dangerous for me to carry and deliver a baby – but my heart aches to be a mother

As a single, disabled woman, I can work; I should work. I can love; I should love. I can own property, drive a car, or run a business. My independence is actively encouraged, my community contribution praised and respected. I’m adding the riches of my skills, experience and passion to society rather than draining its resources.

But to be a mother? To potentially give birth to a disabled child? I don’t know about that one. I’m not sure that’s allowed.

I’m 41 and for most of my life it’s been a given that I would never have a child. In fact, when I was 18 I was told never to have children by an NHS genetic counsellor whose advice my parents wanted me to seek on all sorts of aspects of entering adulthood.

It was a wise and caring move on their part. My connective tissue disorder, Marfan syndrome, is complicated. It affects multiple organ systems, making various body parts abnormally stretchy. For me, it has meant more than 20 operations, walking with a stick and pronounced limp, and living with chronic joint pain. I was warned that not only did I have a 50% chance of passing on this frustratingly unpredictable condition, but also it would be dangerous for me to carry and deliver a baby. Irresponsible.

At the age of 18, motherhood was something I had never considered, so this stranger’s life-changing conclusion not only made sense, it didn’t seem to matter.

Fast-forward nearly 20 years to 2013. Relationships either hadn’t worked out or had never really taken off. My friends had begun parenting in earnest, and my sister had given birth to twins, with whom I was immediately smitten. I was 37 and started to hear my heart whisper, “You want to be a mother. It’s time.” It was a conviction that did nothing but grow, from an exciting light-touch desire to a deep, desperate ache.

And so, still adhering to the received wisdom that I should not become pregnant, I set the wheels in motion to adopt, making huge changes to my life to give me the best possible chance.

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Adoption ticked all the boxes: I didn’t need to worry about passing on my wonky genes, I didn’t need a partner, and I could support and advocate for a child who was different, drawing on all the experience, empathy and resilience that a lifetime of disability has given me. And they are desperate for adopters, right?

Of course, I realised my health would create some hurdles. I am used to that. Travel companies, schools, volunteering organisations, gyms, potential boyfriends, to all of these over the years I have appeared, let’s say… complicated. But I’ve almost always challenged and overcome their misconceptions. OK, less so with the potential boyfriends – which I suppose was what had got me here in the first place.

The first rule of being disabled applied: if at first you’re told no, find someone more enlightened who will say yes

I was six months into the process with my local authority when, amid a fuzzy cloud of platitudes, they suddenly turned me down as a prospective adopter. Yes, I felt knocked back. But the first rule of being disabled applied: if at first you’re told no, find someone more enlightened who will say yes.

Except, 14 adoption agencies and two years later, I was running out of options. Every reason I was given boiled down to my being single or disabled or both, even if only implicitly.

Not only was each rejection a heart-breaking step backwards from my ever more intense dreams of motherhood but also, without me even realising it, my confidence was being chipped away. I was beginning to feel stupid for ever believing I could have been a solo parent.

Another painful Mothering Sunday arrived. As a regular churchgoer, I forced myself to attend the service but nobody was ever going to call me Mummy. And I needed to begin to accept that.

Yet there’s a truth most disabled people know all too well: biology doesn’t go away. The so-called “genetic spelling mistake” in my DNA may be real, but so too is my desire to be a mum. It’s going nowhere. If I don’t confront it, it will consume me. I can’t let that happen. I have struggled with, overcome, buried and beaten into submission too many other things to let this defeat me.

So here I am, 41. Still single, still disabled, still broody. And considering my options. One can already be ruled out: the law concerning surrogacy for single people is complicated and so makes it virtually impossible. But I have applied to be a foster carer, despite a niggling concern that fostering is an offer to do a job rather than an opportunity to be a parent. I’ve heard that long-term foster placements can be as good as adoptions, but I will need convincing.

And there is another prospect, on paper at least. The last thing I expected to be considering, even in a relationship, and the first thing that was ruled out for me: pregnancy.

It may not be possible and would probably come at great financial and physical cost, presenting all sorts of risks and uncertainties to me and a child. Not to mention the burden it would put on family and friends, the NHS, the benefit system and possibly even social services. But no doctor, social worker, sibling or parent could actually stop me.

Yes, I know I’m single. But this is the 21st century – there are ways and means. I could get a sperm donor, maybe even an egg donor as well, and do in vitro fertilisation. I could find a lover willing to forgo contraception. Phone a friend, even. But whichever way I tried, having a birth-child as a single, disabled woman would be fraught with dilemmas. Mostly, I worry it’s highly irresponsible and selfish. And I would therefore be susceptible to great disapproval, not only from strangers but also from close friends and family.

My parents and sisters were supportive of my attempts to adopt and know I’m considering fostering. But for the past 25 years, the unspoken story among us has been that I probably couldn’t – and really mustn’t – have a birth child.

Pregnancy when you are disabled, and might have a disabled baby, somehow seems beyond what is socially acceptable

Ingrained family narratives are hard to disrupt. A pregnancy under these circumstances isn’t on their radar. So, I haven’t yet involved them in my thinking. While I’m still not sure of my own feelings and choices, I’m not ready to deal with their shock, concern and understandable instincts to protect me. I will involve them eventually, just not yet.

In other matters, my family – and for the most part, wider society – continue to take the view that I am no different from anyone else.

But pregnancy when you are disabled, and might have a disabled baby, somehow seems beyond what is socially acceptable. Especially as an active choice, rather than something I might fall into unplanned. It’s certainly not within the realm of what’s (horrible word) “normal”. It also makes me vulnerable. Here I would be, saying openly and deliberately to the world: I want this. I actually desperately want this.

And I think I hear the world reply: that poor, deluded, hormonal woman whose ticking clock, mouldy eggs and dried-up womb are driving her to madness and desperation. She’s out of her mind. She’s had more than she might have expected, given the circumstances. Can’t she just be grateful for what she has?

Well, world, I have never let the lack of health or the lack of a man stop me doing anything. All the risky, “If they say you can’t, prove them wrong” things I have done as a disabled woman, from travelling the world to starting my own business, I have flourished in. Why should this be any different?

One huge reason: those things never had as much impact on the life of another human being. They never involved creating another human being.

But surely the weight of this multi-life-changing decision is also felt by healthy single women who choose to have children on their own? Or disabled women having children with a partner? Or any woman – or man – starting a family? Behind my medical history and relationship status, I’m not much different from them. I’m just a woman with a natural instinct to find fulfilment in nurturing a young life. I am as human as anyone else. Doesn’t that tell me all I need to know?