I wrote this for the Amazing Babes event at the Emerging Writers Festival. Gosh I was nervous about reading it out. I cried when I read it to Adam (and so did he). And I choked up on stage. And I was scared about publishing it. Because these issues aren’t discussed enough. And people fling judgment around – even people in my own community. I don’t think they realise how their judgement creates fear about discussing issues like this one.
But I got brave after getting such a good response from the Amazing Babe audience and I pitched it to Daily Life. It was edited and published. And the response was wonderful. People told me how much they related, they told me their stories of deciding to have a family, and said that Adam and I will make loving parents if we decide to have children. People said they cried. Even my editor. And I cried. Here is the unedited version – longer and funnier than you may have previously read. Thank you.
This is a letter to my unborn daughter – an amazing babe. The hardest letter I’ve ever written and read.
Before my fiancé Adam thinks I’m telling you before he hears the news (he can’t be here tonight), before you tut tut at me for drinking wine, and before you tweet to the world that Carly Findlay is having a baby, I’ll set things straight. I’m not pregnant. Nope. Not yet. That’s just a food baby under my dress.
I’m not even certain that I want my life changed so drastically by a baby. But I’m getting clucky. I’m 33, due to wed next year. My friends are having babies. I gush over animal hoodies and denim pinafores – I’ve been browsing the baby section of H&M. I want to squeeze chubby cheeks and blow raspberries on tummies and tickle wriggly toes.
Last month I hosted an event for adults and children affected by the same condition as me. Adam was king of the kids – entertaining them, making them laugh and making play dough hearts for me. As I was chatting to a panel of doctors, the view of Adam distracted me. The photographer was taking a photo of a 10 month old baby, and Adam was behind the photographer making the baby laugh. Oh my ovaries. He will make a wonderful father.
Amazing babe, I’m wondering so many things. I wonder what you’ll look like?
How will I handle changing nappies and wiping your nose when I can’t look in the toilet after someone else has left their poo unflushed?
What will your hair be like when mine is African and Adam’s is Asian?
Will I hold back from sharing your photo on social media? Will having a baby make me a mummy blogger? (I wonder if brands will be more willing to work with me then?!)
Will I be a stay at home mum and a writer, or will Adam be a stay at home dad?
I wonder if you’ll be an only child like me or have a sibling like Adam.
How will we even afford it?
Will I have to go to weekend sport when I hate sport, and can your dad take you to swimming lessons because I can’t swim?
How can I give up soft cheese for 9 months?!
All these thoughts and you’re just a twinkle in my eye.
When I grew up, the kids at school told me I’d never have sex. They assumed that my appearance and skin was a deterrent to all boys. And for a long time, and after dating a few idiots, I assumed I’d be single forever. But then I met the beautiful Adam. And now we’re getting married. I can’t believe it! This wedding, as well as being the best party I never thought I’d throw, is the middle finger to those high school bitches.
And with marriage comes the possibility of having children – something else I never thought would be on my horizon. Amazing babe, you might be in my life one day.
You’ve inspired me and you’re not even born yet. You’ve inspired me to think about disability and genetics and the value of a life.
After doctors congratulate me, they talk family planning. I am confident that with my medical team, Adam and I will have all the support we need to make informed decisions.
For me, it’s not just simply going on or going off contraception. It’s about genetics. A gamble. An informed choice. And it’s made me think about being pro choice. I am pro choice – a woman’s body is her own and if she is not in the right space to bring a child into the world – for whatever reason, I respect her choice. I believe any life, even a life with a disability – including my genetic skin condition – deserves to live and be loved.
And then there’s this. I know the heaving pain that this condition brings. I know the social challenges, the isolation and the discrimination. It gets better but it never ends. Could I put my little one through that?
There’s also my health to consider. A woman with Ichthyosis having a baby is possible – I have friends who’ve recently become mums. But what if I get too sick to be a good mum? How could I care for a tiny baby and myself when my skin is sore? What if you have the same condition as me?
So many thoughts. And you’re just an amazing babe in my mind. This isn’t even something I feel I can discuss in my own illness community because views about pre-selection, abortion and religion are so staunch, and genetic testing isn’t often considered until after the baby is born.
Amazing babe. If you are born with Ichthyosis, know that you will be as loved as if you were born without. I know this condition so well. It will get better, but it will be hard. And you’ll have a supportive community around you. And my mum, the most amazing babe, has taught me so much. She’s going to make such a wonderful grandmother. You’ll be spoilt!
And there are so many new developments in the treatment and management of Ichthyosis that weren’t around when I was little. Play therapy, assistance in school, cooling vests and creams. Society is so much more diverse now, and there are anti bullying programs in schools. Progress.
And maybe you’ll be our adopted child – Adam and I can give you the life that your birth parents couldn’t. You’ll be loved no less than if you had my smile and Adam’s nose.
You might get some comments about your mum looking different to your friends’ mums. I hope that you teach them about diversity and inclusion through leading by example, and you don’t get too tired explaining my appearance.
My parents had no knowledge of Ichthyosis when I was born. They came to Australia as political refugees – to escape apartheid. They moved to a regional city two months before I was born. And they knew nobody. I wasn’t expected to survive. But I did. And they did an amazing job. Fast forward 33 years and look how much we know about Ichthyosis.
Amazing babe, before I’d even typed these thoughts into my computer, before Adam had the chance to smile at me during a folate commercial on TV (he does it all the time now!), before we’d even been engaged for four months, I was faced with The Talk. The one where I’d have to tell someone my thoughts about having children. The one where I had to tell someone my views on Ichthyosis, genetics and pre-selection and abortion and …
I hadn’t even processed the idea of having children myself.
What should have been an exciting conversation – preferably with Adam or my own mother or my geneticist – was one that left me in tears and shaking. Words were spat at me. Words about me being a burden and being an irresponsible mother because I have a rare, severe, genetic illness. And some arbitrary facts were thrown around about the likelihood of me passing on this condition to my unplanned, unborn child. It wasn’t said but I could hear what they were thinking in their tone: “I’d knowingly cause physical and social pain to a baby by passing on this condition”
A quick google search does not provide accurate details of the chance of me passing on my condition. With Adam’s ‘normal’ skin, and me having the condition, it’s less of a chance than my own parents had. A discussion with my geneticist confirmed low odds – and she also said I should not be denied the right to be a mother.
It did not matter to this person that I’ve got a wonderful team of specialists or that I know more about the condition than they will ever know. It did not matter that my parents had no family support when I was born, but they did their very best. It didn’t even matter that my partner is 100 percent committed to me – and that not even he and I had discussed having children at the time. It didn’t matter how much this conversation hurt me and that I will never be able to feel comfortable around them again. Disability was seen as a tragedy – my disability and your potential disability – and I could not reason otherwise.
My friend Jax Brown, who has a disability, was confronted with a conversation about eugenics – the majority agreed they would terminate a foetus considered to be abnormal. Jax wrote: “Conversations like this devalue the contributions to society of anyone with a disability. This, situations like this, is the weight of marginality. This is minority stress. This is one of the fundamental things that make our lives hard, the unexpected times when you have to fight for your right to be as you are, when you have to tackle the assumptions all of a sudden and with no warning, and you have to do it well because if you don’t the injustice will just continue on.”
When you have a disability, your appearance, body and ability is up for discussion by everyone. From stares and comments, questions and assumptions, judgment and sometimes discrimination. I never thought I’d be discussing my reproductive choices with anyone other than my partner and my medical team. People assume that through disability, we will make ‘irresponsible’ choices, and people will vocalise their judgment.
I know what people think of children with disabilities being born. I see it in the media – headlines scream: “Disfigured Dad Decides To Keep Baby With Same Disfiguring Condition, Despite Cruel Comments And Push By Others To Abort” – and commenters unfairly weigh in on a right to life. Friends always say they don’t mind the sex of the baby, as long as it’s healthy. Doctors force sterilisations and abortions on people with physical and intellectual disabilities. When I was in year seven, a fellow student told me that if I was born to her mother, she’d have given me up. I’ve been shamed because I’m an only child, and told that it would have been fairer on me if my parents had given me a sibling – preferably one with Ichthyosis. A person with my skin condition told me it was child abuse for people with the condition to have children. And as mentioned, last year I was forced to discuss my preference to have children.
It was then that I experienced a small part of what my parents might have felt during the apartheid. That my colour – my condition – will make me an unfit mother.
This is why I blog. To raise expectations. I have to do that every day of my life.
But disability is not the worst thing that could happen.
Stella Young wrote: “Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit.”
Disability is not the worst thing that could happen because you will be loved, supported and planned for. You will be warm and your tummy will be full and you’ll have lots of books to read. You will have a wonderful life – I’m proof that you can. Amazing babe, you will be so planned. I’ll even draw up a spreadsheet for you – and I don’t make spreadsheets willingly.
Disability will not be the worst thing to happen to you as my child, or for me as your mother. The worst thing that could happen is other peoples’ closed-mindedness.
Amazing babe, I don’t even know if you’ll exist. But it doesn’t mean I haven’t been thinking of you.