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19 Dec

Herding Cats – An idiom denoting a futile attempt to control or organize a class of entities which are uncontrollable or chaotic

…like my life.

Just scroll down to see the latest post ↓

“Is this the hill you want to die on?”

9 Aug

Earlier in this year, I got into an argument with a friend of a friend on Facebook. As you do.

Mind you, I try not to do such things. I’ve even gone as far as to take the subject at hand, and post about it on my own page so not to start a fight on a friend’s page.

But this day, I didn’t.

Why?

The friend of my friend started making up a new “tard” word. As in “this person’s so retarded that we have to come up with a new “tard” word to show just how stupid they are.” (please note – all conversation is paraphrased from memory)

I was all “Yeah, “tard” words aren’t cool, stop it.”

Friend of friend. “I can say anything I want.”

Me – “Well, as someone who has a daughter who is, to use the more outdated medical terminology, mentally retarded, I am telling you that “tard” words aren’t cool.”

Friend of friend – “OMG, I can’t believe you used the phrase “mentally retarded”, I am a teacher and we don’t use such language. I have never used the phrase “mentally retarded” in all my years of teaching!”

Me – “Da fuq?”

Yes, dudebro called me out for using “mentally retarded” after defending his use of his made up “tard” word, trying to paint me as the insensitive one. So I said something snippy and brilliant and kinda mean that I don’t recall because it’s been months. But I’ll own that I was being snippy and rude at that point.

Our friend steps in…my friend who has proclaimed their love of my daughter, who has always been super supportive, who has always shared what I written…and my friend told us to cut it out, and me basically to shut up.

My friend told me to shut up.

I may have seen a wall of white hot fire. I don’t take well to being told to shut up like that.

I was all “You have got to be kidding me.”

My friend was all “It’s my wall, people can say what they want, I won’t censor them.”

I was all “Seriously, are you kidding me?”

My friend said “Is this the hill you want our friendship to die on?”

Hmmm…let’s contemplate that hill. That hill that’s built on a slur for people with my daughter’s disability? The slur that I have been vocal about not using? That’s sort of been my platform? That I’ve written blog posts about and you have shared? Is this the hill I want to die on? Want to sacrifice our friendship on?

My first thought was “Do you not know me?”

My second thought was “No. Honestly, I will not unfriend you over this. You are my friend.” And I said this.

One or both of us may be having a bad day. I was definitely now viewing the post through a red haze of anger. The friend of a friend was at that point, offering to not use “tard” words on our friend’s page.

But as it turns out, the damage was done.

I steered clear of commenting on my friend’s social media, partially because I was angry and obviously posting in anger wasn’t working out. Then it looked like my friend took a break from social media. Summer came along and I got busy with things.

But last week, my friend posted something on Instagram. And I commented with a long-standing running joke between us.

Today, I realized that my friend has blocked me on Instagram. We are also no longer friends on Facebook.

So here I am, alone on this hill that one of us was apparently willing to let our friendship die on. I stood my ground. They walked away.

If I could go back to that day with that post, would I choose to stay silent?

No.

Who would I be, as a mother, to allow people to use slurs based on my daughter’s disability? How is using a disability slur any different than using a racial slur or slurs against LGBTQ+? In my world there is no difference.

So yes, I guess in the long run, it’s a hill I’d die on.

 

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Photo – me with my kids. on a hill. in Ireland. 2011

 

 

 

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Life Interrupted

7 Aug

“No excuses!” life shouts at me.

“But…you see-”

“NO EXCUSES!” society shouts, cutting me off.

And there is my excuse.

“You keep saying you’re cleaning your house but…” they say as they wave their hand to note the piles of crap everywhere, waiting for the final sorting and putting away phase.

“You keep saying you’re going to lose weight but…” they say as they eye my not-decreasing waistline and the cake in my hand.

“You keep saying you’re a writer but…” they say as they imply that I’ve yet to be published.

“Well…you see-”

They interrupt me. “NO! NO EXCUSES! JUST DO IT!”

And therein lies the problem.

My life is a series of being interrupted. Not only that, but Maura’s latest thing is to start a show, watch five minutes of it, and then switch to another show, watch three minutes of that, switch to another show, watch 27 minutes of that and flip shows five times in five minutes. I already have a list of things to do that’s a mile long and now I have to figure out how to break Maura of her tv addiction. And yet I have curtains that I need to hem that have been sitting there for six weeks but I can’t do those yet because we rearranged Maura’s room and in doing so, she got into all the stored winter clothes, so someone moved them all into the laundry room and started washing the already clean clothes, so now I have to finish that, but I also need to wash my clothes because it’s been so hot here that I haven’t been doing laundry because I’ve been avoiding turning on the dryer. But I also need to get Maura out of the house, but I also need to go grocery shopping, but Maura and grocery shopping don’t always mix. I could have groceries delivered, but that costs extra money and I’m trying to be thrifty. But then we have no food and so I end up ordering pizza, which is not a healthy diet food, and at that point, I just don’t care.

And then, because of all this, I have to get down on myself for having the messy house, the disorganized life, the lack of writing, the lack of weight loss. Then I start feeling I can’t do the “fun” things like writing or sewing because I need to do the cleaning or the laundry, but I really don’t want to those, but I feel like I should, and then I end up not doing either thing and just surfing the internet feeling overwhelmed, or reading and ignoring the mess around me. Which is a step up from laying in bed binge watching shows.

I’m overtired, overwhelmed, and overweight. I am, apparently, also my own worst critic. My new therapist has named her Mean Phoebe, and Mean Phoebe is actually quite mean. She is comprised of all the people who have been over-critical and not accepting enough of me throughout my life. I need to work on that as well.

I keep forgetting to though because people keep interrupting me to shout “NO EXCUSES!” Or to fix the batteries in the remote. Or put Maura’s hair in a pony tail yet again, even though I put it in a pony tail ten minutes ago, and she keeps pulling it out just for me to redo it. On top of normal daily interruptions.

And to be honest – being super busy just isn’t my style. I need down time. Probably because with Maura, I always have to be on.

My life is chaotic in ways others don’t understand. It’s normal chaotic family life topped with the unpredictability of life with Maura. I crave organization these days. If everything is organized, then maybe I can stop having to choose between cleaning and writing. Maybe if everything was organized and hidden away, Maura would stop pulling everything out and depositing it all over the house. If everything is organized, maybe the visual of neatness will bring order to my brain. I walked through Ikea the other day and all those little show rooms, where everything was laid out just right and shelves were full of little boxes of things organized….it was so tantalizingly delicious.

Reality is, I could be all Kon Mari organized and Maura will still create a mess. I will still be interrupted. Laundry would still be backed up. But at least I’d look like I had my shit together, and that’s something, right?

But I have to start. And starting is hard. Especially when Mean Phoebe is muttering about how we’re just a slob, we’ve been a slob our whole life.

And society yells “NO EXCUSES!”

And I flip off both society and Mean Phoebe, and start a list. Not a bullet journal. Not a 40 bags in 40 days challenge. Just a list. A little list. Do my laundry. Do Maura’s laundry. Change the sheets on our bed. Baby steps to the laundry room. Baby steps to the kitchen. Forget meal planning for two weeks, just figure out what we’re eating tonight.

Because some of us have excuses. Some of us have lives interrupted.

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Please don’t say “I’m sorry”

31 Jul

It happens often enough that I brace for it. I say “My daughter has special needs” or “My daughter has moderate cognitive disabilities” and the person I’m explaining it too suddenly channels David Tennant playing Doctor Who –

Im-so-so-sorry

Seriously, this happens a lot.

And I often wonder – why are they sorry? And then I remember – because the world thinks being disabled is, like, the worst.

So I try to assure them that we’re cool with it, but they keep saying sorry.

Listen, I get it. You think you’re being empathetic. To an able-bodied person, becoming disabled sounds awful. To a parent, having something “wrong” with your child seems to be the worst thing that could happen. You think you’re being kind, being thoughtful, being sympathetic to what you perceive as our burden, our cross to bear, our struggle.

So I’m here to tell you – just stop it.

No, really, stop.

It’s an awful way to respond.

You say sorry as if it’s awful to have a child like mine even when you haven’t met said child. Because if you had met my daughter, you would know that her life is awesome and fabulous, just like my daughter. It’s not a life to be pitied or to cry over. It’s an awesome life lived fully. She loves and is loved.

When you repeatedly tell me how sorry you are that my daughter has disabilities, you may not realize that you are implying that maybe you think she shouldn’t exist. Because in a Perfect World, there’d be no disabilities. In a Perfect World, every child would be born able. You may not mean to say you’re sorry my daughter exists with all her disabilities, but you unintentionally imply it.

And that’s just not cool.

So, what can you say instead of “I’m so sorry” when I tell you my daughter has disabilities?

“Oh, tell me more.”

“Oh, okay, want more coffee?”

“I’m totally not good with these things and don’t know how to react but I’m sure your daughter is every bit as fabulous as you.”

The best answer I’ve ever gotten came from one of the movers when our stuff arrived in Ireland. Maura was so excited to see our stuff had arrived, that she ran up to the head mover and babbled excitedly at him. His eyebrows raised slightly, because she didn’t use anything close to English in her babbling. I decided to give the disclaimed – “She has some special needs.”

The man shrugged. “Ah well, there’s nothing wrong with that.”

And he was absolutely right.

There is nothing wrong with having a disability, or having a child with a disability.

So please, stop telling me how sorry you are.  It’s all good here.

 

 

 

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