A difficult letter to my unborn daughter

Date

Carly Findlay

Writer and disability activist, Carly Findlay.

Writer and disability activist, Carly Findlay.

This is a letter to my unborn daughter - an amazing babe. It's also the hardest letter I've ever written.

Before my fiancé thinks I'm telling you before he hears the news, before you tut tut at me for drinking wine, and before you start wondering about my due date, I'll set things straight. I'm not pregnant. Nope. Not yet.

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. But motherhood is a decidedly more complex issue for me. You see, I was born with a skin condition called Ichthyosis. 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 my fiancé Adam. And now we're getting married.

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.

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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.

While 'family planning' might simply mean going on or off contraception for some mums to be, it's also about genetics for me. It's about making a gamble. An informed choice. And it's made me think about being pro choice and pro life.

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 am pro life because 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 you – 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? Could I care properly for you when my skin is sore?

What if you had the same condition as me?

There are so many questions. 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.

A quick google search does not provide accurate details of the chance of me passing on my condition. With your dad'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.

But 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. My mum, who has taught me so much, is 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.

Or maybe you'll be our adopted child. But you'll be loved no less than if you had my smile and your dad'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.

Disability shouldn't be seen as a tragedy - my disability and your potential disability - and don't let anyone tell you otherwise.

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.

Last year, I was forced to publicly 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.

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.

 

Carly Findlay is a writer, speaker and appearance activist, challenging people's thoughts about what it's like to look different. This story is edited from a piece performed at the recent Emerging Writers Festival. Follow Carly on Twitter @carlyfindlay