in and out and in and out

Your favourite support worker over the past few years has just resigned. I’m sorry, Em. You rang me when you found out. You said: it’s ok, I’m used to it. And my heart hurt.

Not many of us would be happy having to invite someone into our lives and our homes. You welcome these people into your home, your life, your world, your family. To some of them, it’s a job. But we have been lucky and most have loved you just as much as you have loved them. Still, they have their own lives and just like that, they can sign out of yours.

No one else is there when they are with you and M. I can’t help but wonder, do they ever turn up late? Do they ever look at the clock and sneak out half an hour earlier than the roster suggests?

A long time ago I worked at a house where all the residents were Deaf as well as having mild intellectual disabilities. When I was being shown the ropes the support worker teaching me would stop signing and speak to me verbally in front of people when she wanted to say something about them (and what she had to say was not good, like: put them to bed at 8pm so you can have some time to yourself). I was appalled and signed back when I responded. She said: oh they can’t understand you anyway. Once I got to know the people I was supporting I discovered this was absolutely not true. The first night shift I had was a Friday. We stayed up late playing board games and I encouraged each individual to decide when they wanted to go to bed. Most of the workers at that house were fantastic. A few were not. As has been my experience everywhere I have worked in the disability sector.

So I do tend to be sceptical when it comes to people’s motivations.

Has anyone tried to brush you aside, making the assumption that you don’t understand or can’t make your own decisions? Sadly the answer is probably, but we might not ever find out for sure.

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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.

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?

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.