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.

Navigating all this

You were meant to come over yesterday to my house for afternoon tea with Dad.

But you were too tired and wanted to spend the afternoon at home, so you cancelled.

Everyone was upset with you, because we all really wanted to see you.

I rang to find out if everything was ok after I heard from Dad that you didn’t want to come anymore.

You told me: “Dad was… uh… really… uh…”

“Pissed off?” I suggested.

“Yeah, that.” you replied.

Well, I know. Yes he was a bit pissed off. And you were upset because you realised after you cancelled that it would mean you wouldn’t get to see my kids, your nieces, and it dawned on you that you were going to miss a fun afternoon. But while everyone was annoyed, I thought of all the times I have been too tired to do something on a Sunday afternoon and have cancelled my plans without a second thought.

Just because you are YOU, doesn’t mean we can demand things of you or expect things of you that we wouldn’t expect of ourselves.

I hope you had a lovely, restful afternoon at home, being you, and doing whatever it is you wanted to do.

a coffee

You rang me at work today, “Hello,” you said, “I’m around the corner, would you like to come and have a coffee with me? Uh.. I’m not meant to be at work today and I don’t really know what is going on.”

You recently got a new job at a(nother) coffee shop, very conveniently located within walking distance from my office. You have been routinely arriving an hour before your shift begins, but your new boss assures me it is not a problem. Right on cue – it was 10.34am – you don’t start until 11.30am. But on this particular day, you weren’t on the roster as your boss thought you were still on holidays. Hence, the phone call.

I left my desk and walked down to meet you and figure out what was going on. I found you sipping a cappuccino outside under a white umbrella. I spoke to your boss and she explained you would be on the roster next week. She felt terrible you’d travelled all the way on the train to come to work, but there was nothing much she could do as she genuinely didn’t need you that day.

You took it all in your stride, you’d called me, Dad, and one of our other sisters and had us all lined up to have coffees with you one after the other rather than get on the train and go back home again.

I love your initiative, Em.

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.

in light of yesterday

I was thinking overnight about this little boy. How in this day and age people think it is ok to farm children and pick and choose which ones they want, rejecting the slightest imperfection.

What a sad world we live in.

We are shaped and moulded carefully by those around us. The push and the pull of this influence and that. We are tumbled around like rolling gems until ever so slowly the final product emerges, beautiful and shimmering yet different to all others. I find it incredibly disheartening to think there are people out there who think they are better off being surrounded by clones of themselves, as if this will somehow enlighten them, as if it will please them.

How much they will miss out on. How much they will lose.