29 June 2015

My unborn child has inspired me to think about disability and genetics and the value of a life.

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.

Will it hurt when you come out?

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.


  1. Seriously, I love this piece. And I think you & Adam will make fabulous parents, if you choose to do so. Your amazing babe would be born into a loving family, and one that has obviously carefully considered the effect that having children will have on them. Your child would never have to contend with not being loved or wanted.

    Besides, as you say, genetics is a gamble for everyone. My odds of having a cleft baby were not hugely higher than the odds for someone with no cleft or family history. It's not my fault, or Shannon's or Jasper's, it's just the odds we drew. Anyone who can look me in the eye and say that Jasper doesn't deserve to live & be happy is a pretty sorry excuse for a human in my books. 💗

  2. I love this! When we were thinking about having a child, the gamble came down to these questions: do I wish because of my ichthyosis that I had never been born? Would my family have been better without me because I have ichthyosis? Because if my ichthyosis Would the world have been better without me?... my life has been incredible. I have known LOVE and heartbreak, joy fun and pain. I've had romances and adventures and traveled the world. I have always had AWESOME kind friends. I have a happy marriage and have great sex! I have a loving supportive family. I have had success in my career and am using my education to daily support others in need. I am very happy. All things I would want for my child. Meanwhile I have ichthyosis. It has not defined or ruined me. It has not made me bitter. I know not every person with ichthyosis can say the same. And I respect their choices to not want to pass onto a child the miseries they experienced. But as a therapist I can say, EVERYONE has pain and something they have to overcome. Mine was ichthyosis. If my child's struggle turned out to be also ichthyosis, who better could understand, empathize, care for and support them than me.

  3. I love this. I wish I had've had the foresight to think of such things before I became a Mum, but I was still a kid myself when I became a Mum so.....yeah..... Your letter is simply beautiful. Your babies are going to have wonderful parents!

  4. People are awful. Re. Judging, I mean. Sadly the most judgemental can often be making far worse parenting choices than whether or not to bring a baby into a loving home. The health or otherwise of a baby is always a lottery. The best we can do as parents is work on what we can control... Is the home stable, safe, adequate and loving? Are we prepared to teach the lessons of good character? Are we prepared to learn more of them ourselves? If we help our children to become good people we are parenting sustainably! You two will be awesome when the time is right for you. X

  5. So good. I was told at 12 yrs old when diagnosed with type 1 diabetes i would never have babies and if I did they would be born dead or deformed. I proved them wrong. Distress and depression in pregnancy for women with type 1 diabetes is my PhD topic. Love your work xx

  6. Great honest piece again Carly, well done. Having a baby is a huge decision for anyone without having to be subjected to judgement from outside where really its no-one else's business. Having a condition that's painful and makes life hard sometimes does make looking after babies more difficult on occasions but parents are resourceful and we find life hacks....perhaps an idea for a future blog post! There are lots of us in the community that would be supportive and offer advice (without judgement) on this subject but yes I agree that there are some that are judging of certain opinions. X

  7. I've worked with kids that had heroin addictions as babies and they're parents would keep having kids.
    You've put my thought into this and it shows the level of caring you would provide to your child.
    Knowing you both as I do the quality of life your child would have is better than most kids can hope for and that's what really matters.
    Proud of you both for over coming yet another challenge and reminded of the words "those that matter won't mind and those that mind don't matter!'

  8. Carly Findlay the edited version was great, and this is spectacular! Soft cheese! :-) Be strong girl, I survived two pregnancies without feta (the second love of my life). You can do it. Once you begin the dog-nose aspect of pregnancy, giving up soft, smelly cheese is a breeze. lol!

  9. The only baby I didn't want was a dead one. After two miscarriages I have been firmly convinced that it is life that matters. And for the children it is love that matters.

  10. So beautiful. So true. Exactly the same for me!!! ~Ellen

  11. This is one of the best blog posts I have ever read! Thank you for sharing this with us! smile emoticon

  12. That was an absolutely beautiful piece Carly! You have an amazing gift x

  13. Such a beautiful and amazingly honest letter Carly. I understand your point of view completely as a woman with the desire and curiosity to be a mother. May you achieve all that your mind body and soul desire.

  14. I can't even begin to describe just how well written and how well put this is and your thoughts could resonate with me as the potential
    Thoughts of my own daughter who has neurofibromatosis

  15. If you love your life, there's no reason your baby won't love his/hers.

  16. I was in that same place. The decision to have children did not come easy, but at the same time it did. My husband didn't think twice, which I love him so much for. One day I would think well what if they can't do things with their friends and feel left out. What if I can't do certain things with them if they have normal skin. I love this soooo much, as since having Sadie I have never looked back. smile emoticon

  17. Thank you for sharing this piece, love it!! My fave part is "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."
    You & Adam will make the right choice, oh & thanks for making me cry at 8am

  18. i've thought this many times but don't know if i've posted it.... for many of your posts i could so easily take out icthyosis and substitute the word down syndrome. my daughter ms19 has probably put me in much the same place as your parents in terms of people questioning the quality of life (her life is fantastic) and my choices to have more children. and the shame of it is, she doesn't have the capacity to fight back with words as you do. however, she is right up there with you fighting back with awesomness. which apparently isn't a word... shut up autocorrect!

  19. Ignorant question...Are your insides affected by your skin condition? If the answer is no, then I see nothing stopping you from becoming an amazing Mum. Your heart, your love is what makes you into a Mum. Not your hair, your age,your eyes or even your skin condition.
    My sister suffers from a genetic eye disorder, she has been legally blind since 21. The doctors said she had an extremely high chance of passing this on to her children. So she put off having children for so long. After I had Jarvis, she finally admitted her heart was breaking from the emptiness of not having a child. The very next day I drover her to a doctor and started her on the road to IVF and having a child. Her son Oli will be 1 in August. Does she struggle because of her lack of vision raising a child? Yes. But love wins as she is the happiest I have ever seen her, sleep deprivation and all.
    So I guess I am saying, do not let the fear of the unknown stop you. With you beauty and your strength you should have ten kids! Whether they come from your womb or another persons/

  20. it's a stunning post. I can relate to it in many ways - not for myself, but in oblique ways because of my late sister - and no WAY should you deprive yourself and Adam of the wonder of having a child because of possibilities. We ALL play the genetic lottery when we have children. NO-ONE can guarantee a healthy or 'perfect' child. I know three children in my social group alone born with serious disabilities to healthy parents. Life is a lottery. It's all a fucking lottery. Play to win. Because you will win.You already are winning.

  21. This post made me teary - I am so very glad you wrote it.

    I blogged my response at https://geejenmotw.wordpress.com/2015/08/02/genetics/

  22. I'm a mother of a child with a disability. It is not the worst thing that could happen. I would not change a single thing about him, although there's plenty I'd change about society.


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