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