October 16, 2014


Emily and Me: growing up with a sister who has Down syndrome {guest post}

Meeting Lucy was one of those Universe-conspiring moments. I stumbled upon her blog one night whilst feeding my baby and I immediately felt connected to her words, beautiful in their simplicity, describing life as a creative spirit and mother of two small girls. It wasn’t until later that I discovered Lucy has three sisters, one of whom has Down syndrome, and I realised we were both part of ‘the club’. Thank you Lucy and Emily for sharing stories of sisterhood here with us. I am honoured. ~ Annie x

L1060126My younger sister Emily is married, lives with her husband, works at a local café and has two fish. She and her husband also both have Down syndrome.

When we were teenagers Em used to ask me: “Do we look alike? Will I ever get married? Will I have babies? Will I be able to drive?” I used to fend off her questions: jolly her along with dreams of being an aunty to my children, to being so busy helping me that she wouldn’t possibly have time to do anything else. I look back now and think – how patronising.

While our family always told the world she could do anything she could dream up, secretly, behind hushed hands and whispered questions, we wondered if it were true. Not because she wasn’t capable. Because the world, and the people living in it, might not allow it.

As we grew up – four sisters – we all began to make choices as to which direction we wanted our lives to take. Emily was no different. She came to realisations about things she would like to try and do. And with some additional persistence, surrounded by her family and a great support team who truly believe in her potential and right to choose what she wants in life, choose she did. The day I stood at the front of the chapel as her Maid of Honour, and watched her walk down the aisle towards her future husband, I felt overwhelmed with a sense of righteousness and pride. I looked around at the teary-eyed faces of her closest friends and family – people who believe in her through thick and thin. Ultimately she makes things happen, by actively choosing and following certain paths, but the support of the people around her was, and is, absolutely immeasurable.

Screen Shot 2014-09-20 at 12.06.43 pmI am so immune to her difference I forget that for some people it is amazing or wonderful or strange that she is married and works in a paid job.

Quite literally last week someone asked me: “So does she live at home with your parents?” When I stated that no, she lives with her husband, they were shocked. After some more discussion about her life I was surprised to hear, “Oh, that’s so sad.”

I didn’t know how to take it. I never think of her life as sad and thought it odd it might be seen this way. Some part of me actually preferred hearing a comment about sadness rather than the nervous, gushing, “Oh my god, she’s so cute!” I find it difficult to hear my sister reduced to a stereotypical image of a ‘cutie’ with Down syndrome cuddling inappropriately and dancing and loving music. (I have never actually met anyone who doesn’t like music… have you?) There was something real and honest about someone seeing an element of sadness, which is probably there if you look hard enough at anyone’s life.

A number of years ago Em asked me why things were so easy for me. We both cried and cried and I can’t remember what I said. But I’ll never forget her words: “How come we’re so different? Are we the same? Why is it so easy for you?”

I can’t tell her why things are the way they are. Although I know now she just needs me to listen. To listen and to act. To rally up the support needed. And with the right support, anything is possible.

This much is true.

My life is forever impacted having Emily as my sister. I am forever impacted. I don’t know who I would have been, who I am, if it wasn’t for her. And I can whole-heartedly thank her for that: for teaching me about difference, about values, about life.

Real life.

Em is now planning her next steps towards a career in childcare and we are behind her all the way. I asked her to share some of her thoughts about life, marriage and Down syndrome:

UnknownWhy did you want to get married?

I wanted to get married because I really love the man in my life and I’m so glad to have him. Being married gives me a lot more confidence. It’s a wonderful thing.

What would you tell other people with Down syndrome or other disabilities who wanted to live with someone they love?

I want to tell them: ‘Would you guys ever believe in love at first sight?’ And hopefully for most of them it will be yes. I did believe that one day I would find a guy I would want to marry, and he would be the man of my dreams.

What if they felt like they couldn’t live out their dreams? What would you say?

Well I might say that’s not true. Everybody can easily get married or do anything. I know they can. We just have to believe in each other. Also, if they want to get a job at a café or chemist or any kind of job they want to get – it’s their future.

Lucy is the mother of two small children and in between kinder drop-off and working part time at a not-for-profit, she occasionally finds the time to write. She is passionate about disability culture, community development, parenting, birth choices and simple living. She blogs at Notes for Emily and Motherwho. You can also find her on twitter @hellolucybain and instagram @motherwho.


I am so grateful for your thoughts and comments, so please reply below.

  1. I love this! Thankyou Lucy and Emily for saying it like it is and for inspiring to believe nothing is impossible for my 3 year old son who also has DS, the youngest of 4 boys 🙂 xox

  2. Awesome story! Looking forward to hearing more about Em’s life. I work with a little boy who is 3 and has Down Syndrome. I can’t wait to see he’s achieving in 10, 20 years time. Disability does not define people. Just like my brown hair does not define me, nor my shoe size, nor my age. We are all capable and like Em said, ‘we just have to believe in each other’. Thanks for sharing Lucy 🙂

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