a family gathering

We had a family get together yesterday for all the birthdays we have in May: mine, Gramps, my step sister and my step dad. Emily and her partner bought me a birthday present while they were in Bali and gave it to me yesterday. It was a small box covered in floral material. Inside was a selection of tiny perfumed bottles – the ones you have around the house with the smelly sticks sitting inside to refresh the air. Only this present was minus the sticks that go inside the little bottles. It made me smile, though I’m not sure now what to do with it. As I mentioned before I have trouble letting go of the trinkets you collect for me. So I’ll just say thank you.

This particular family occasion was exciting as one of our (many) Aunties was announcing her pregnancy. It wasn’t until later in the night that it came out that Emily (who had been answering the door all afternoon) had been telling people almost before they stepped foot in the door, and the majority of the family had to feign surprise when they were told a few moments later.

We laughed. Although, when you did this same thing to me the day I was announcing my first pregnancy a number of years ago, I was really pissed off.

on documenting

Last night at my writing group we did an exercise where we had to write down a scene with action that related to our individual projects. Something that illustrated the conflict in our stories.

I sat and sat and sat, twiddling my pen while looking around the room at the tops of everyone’s heads. How can I begin to describe what it’s like to have a sister with Down syndrome? We ate breakfast. We went to school. We fought. We grew up. We left home. We got jobs. We got married. Where’s the action in that? The conflict? The interest?

Why would anyone want to read this?

These are the questions I mull over.

back in town

You’re back in town after a holiday to Bali. You came home laden with gifts for everyone – something we usually raise a few eyebrows at… what will we get this time? Over the years I’ve collected many pairs of glitzy earrings from you, even though I don’t have pierced ears. But we all smile and laugh and on we go. Usually I can’t bear to throw them out, and will often find your bits and bobs in various boxes around my house.

I arrived at Mum’s on the weekend for a family get together. You handed me a bag with presents. A gorgeous pair of floral flowing pants for me – and two matching pairs for my daughters. (And the third season of a teen drama series for my husband… haha) No earrings! And no flashy beaded bracelets or gaudy necklaces.

Thank you. You’re always full of surprises.



a phone call

Mum called me from Emily’s house the other day. Em is going to Bali with her husband and mother and father in law in a few weeks. I think it will be about her fifth trip to Bali. And yes, Em is married, her husband also has Down syndrome. WHAT? I hear you cry… Another story for another time. This time they will be travelling with her in-laws, however on previous trips they have done it on their own, with someone carefully navigating them through the airport on this end, and another meeting them on the other side. I remember it being a time of stress due to airport regulations, and how far you could get them through the system without having a ticket yourself. It was somewhat awkward, picking our way through red-tape, but they did it. And we all felt such a sense of nervous satisfaction.

So Mum rang me and asked me if I could go to Em’s house the night before she flies out, to help set out some comfortable clothes for her to wear on the plane and make sure she has the right things in her bag. I agreed and arranged a time and wrote it on my calendar. Usually I would not blink an eyelid at this. But with all this writing and thinking about her, it made me wonder what it would be like if she didn’t have Down syndrome. If, instead of me driving over to her house to help her choose a pair of tracksuit pants and a loose fitting t-shirt, and laying them carefully on the end of her bed, and checking her bag to make sure she had the right things in her carry on luggage, if instead of that she was just heading off to Bali, minus the DS and the BS. That people didn’t raise their eyebrows in shock every time it was mentioned that she was going to Bali with her husband.

Maybe she would be calling me to catch up for a coffee before she left, maybe popping over to visit me and the kids. Maybe she would have kids of her own, and we would lay together, feet touching on the couch while we drank a cup of tea and spoke about the trinkets she would bring us back, with a few kids milling around with some lego on the floor. Maybe we would all be going together, we’d drink glasses of wine by the poolside while our husbands swam with the children. We’d chat about our parents or the weather or the markets while we gently dried our babies hair with fluffy hotel towels.

Is that what it might have been like for us?

Over the years we have always steered away from wondering about this. Occasionally on long drives, or up late at night on holidays, we would wonder if there was a pill that would take away the DS… would we want her to take it? 

Of course we say no. No way. Not now. We love her so much, and she would be gone. Replaced by a stranger. Some stiff 30 year old woman who wanted to work a corporate job, who didn’t like us, whose favourite food was spaghetti marinara, when we know that she is meant to love chocolate ripple cake. It would be all wrong. But also, we would be different. If I shave away all the parts of me that have been made, moulded, shaped, and carefully manicured by her, would there be anything left of me?

Do you ever wonder about this?

measuring success

It’s funny, the way we talk in this world. The little nuances we use to shape language and convey hidden meaning.

I am married and live with my partner.

You are married and “live independently”.

I go to work.

You have a “work placement”.

I catch public transport.

You are “travel trained”.

I cook and clean my house.

You have “independent living skills”.

I catch up with friends at the coffee shop.

You follow your “individual support plan”.

Sister, you are just the same as me, you always have been. Only you are given fancy names and labels that achieve nothing more than to make you feel more different than the world already claims you are.

No matter what anyone says, you will always be a married, working, socialising, public-transport-catching, independent woman to me.

the other day

Dear Emily,

I overheard you talking to my three year old daughter – your niece – asking her if you would make a good mother. Our relentless and nonsensical responses have rampaged you for years: Oh! But we need your help as an Aunty! Who would help us if it weren’t for you? You have moved onto asking the children, our attitudes proving unfruitful.

(She said yes, you would.)

Someone asked me:

Why can’t she be a mother?

And I didn’t know what to say. I have spent my entire life telling people what you can do, even when they think you can’t. I shove my placards in their faces and stand my ground when anyone tries to say otherwise. If they look at you the wrong way, I am there, reminding them, telling them: you can, you can, you can.

It makes me uncomfortable to talk of the things you can’t do. It makes me sad to think of the things you will never do.

All I can do is try to replace those things, hide them from your view.

I never want you to miss out.

I never want you to feel different.

But I know you do.

I’m sorry.


I watched this ted talk today on the hidden power of siblings, spoken by Jeff Kluger.

 Our parents leave us too early. Our spouse and our children come along too late. Our siblings are the only ones who are with us for the entire ride.

I watch my own two daughters, at the beginning of their journeys. Navigating their growing relationship, pushing boundaries, playing tug of war. Placing a warm hand on the other’s shoulder. Offering a soft stroke when a tear falls down a cheek. Looking into each other’s eyes. Learning. Loving.

Down syndrome or no Down syndrome: I am lucky to have three sisters. So. Lucky.

dear emily

Dear Emily,

I’m not sure where to start, or where this will lead. You know by now that I am writing about the two of us. You were quite excited when I told you, and had many suggestions for topics, situations and events I could include in the finished product.

While I write I keep wondering if I am writing for myself, or for you. A bit of both really. The more I write though, the more I begin to realise that until now, almost everything I have done in my life has been for you.

This time, I think this project is really for me. Do you mind? I hope you don’t.

Love your big sister,

Lucy xo