Pasta

I’m pregnant with my third baby.

When we spoke the other day you were insistent: “Are you eating enough pasta? It’s good for the baby.”

I tried to explain that pasta probably wasn’t the best thing I could be eating, out of all of the things… but the pasta discussion continued.

“The baby needs pasta. It needs carbs to be strong.” you said.

Reluctantly I gave up and agreed: “Yes,” I lied, “I’m eating lots of pasta.”

Happy with this, you changed the topic.

Sometimes, I need to learn to keep my mouth shut and just agree with you.

potatoes

My eldest girl was sick and you were concerned. It was just a cold, I assured you. I could hear the worry in your voice. You wanted to come over and help me, you’re an Aunty, it’s your job, didn’t I get that? You didn’t understand that it would take me over an hour round trip to pick you up and bring you back here, and that the kids needed to sleep. And that I was actually fine and just wanted to go to bed.

Finally, I convinced you that you could help me more by being on the other end of the phone.

Your parting advice: “Potatoes. Feed her potatoes.”

sister to sister

The phone rang and it was Emily. After all the usual formalities she said: “I want to talk to you, sister to sister. I want to talk to you about sex.”

I sat forward on the couch and rubbed sleep from the corner of my eye. “Yes? Ok. Great. What do you want to talk about… about sex…?”

I won’t go into the rest of our conversation, as it was private – sister to sister. But it has got me thinking. About sex. And about disability. The majority of the time that you hear about disability and sex or sexual behaviour, it is about inappropriate behaviour, it’s about abuse. It’s about prevention – prevention from having children, from making mistakes, from doing anything deemed outrageous. Meanwhile, we all go back to our beds – or other destination – and have a whale of a time.

So. Where is this going? I want to know who is standing up for my sister. Who is out there, educating her about how to give and gain pleasure with her partner in a way that is respectful, loving, intimate and kind? Who believes that she has as much right to a loving and pleasurable sexual relationship as the next person? Apart from me, of course. Because I hazard a guess that in some families, she might not have someone like me that she can easily turn to for responsible and open-minded advice. Just a guess.

The number of times that someone has responded with an awkward slash strangely curious: “So… do they have… SEX?” when I tell them that I have a sister with Down syndrome who is MARRIED (gasp!) is unbelievable.

I have to bite my tongue, hard, to prevent it from spitting back: “I don’t know, DO YOU? Tell me all about it!”

What about you? How do you support your family member/friend/other with an intellectual disability to develop healthy sexual relationships?

I’d love to hear your stories.

a tear for you, a tear for me

I just hung up the phone from Em. I rang her for a little Sunday night chat, to see how she was. I should call her more. I’ve been thinking of her a lot this weekend, during all this. Of what she has brought to my life, of what I have brought to hers. I didn’t mention yesterday that during some of the coverage about little Gammy on a major television station, some footage was shown of my sister dancing with some friends. All of a sudden, there she was, smiling, performing. In the context of everything I was shocked. What has she got to do with this? How is this relevant? I texted her a photo, she didn’t know anything about it.

She told me just now that she had cooked her and her husband chicken drumsticks for dinner and some pasta salad. She said she couldn’t get the chicken right, and it was pink on the inside so she couldn’t eat it all. We spoke for a while about a better way to cook it. We said some I-Love-Yous and Goodbyes.

I cried when I hung up the phone. I am crying for her. Trying to cook a chicken drumstick and just not able to get it quite right. Like so many other things she tries and tries and tries to do. Trying so hard and missing the mark, ever so slightly. Sometimes, it’s not fair.

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.