This ain't no disco, this ain't no country club either

"...all I wanna do is have a little fun before I die, a man said to me, out of nowhere..."

Yes I do have a song in my head.

There are way too many days that I wait for 4:30. 4:30 is when I leave work and sometimes I just hit a wall. That's the issue with office jobs. Sometime, somewhere, someone made up this rule that you HAD to be at work for 8 hours.

How productive are those 8 hours really? What if you get bored and spend at least 2 of those 8 hours on facebook, talking to coworkers about non-dairy recipes, or generally gossiping? What if really there are only 6 hours that are truly productive. Does that mean I have to be paid less? Just because I am efficient and rarely have work go into overtime I should be punished by taking away pay. Hours = pay. Unless you are salary of course.

It just really bugs me how our society is so focused on what is SUPPOSED to be instead of maybe what SHOULD be. Maybe we SHOULD consider making our hours more reasonable. Sometimes I will be working over 40 hours a week, sometimes I will be working around 30, altogether that should even out to how much you want to pay me. How much is my work worth to your organization? That is the real question. And if I'm not getting things in on time or I'm spending too much time on facebook then fire me.

Maybe we spend too much time worrying about our PTO and our sick days and our unexpected days off, and not enough time focusing on work and what we want out of our life. Sometimes these petty things get in the way.

And that's no way to live life.

Until next time.

Keep calm and carry on.

Fragile Xtiquette

I have two pictures of my brother on my cabinet at work. A few times people have stopped and asked me about the pictures and I will attempt to provide a short explanation of Fragile X and how it has affected my brother. Two of the more recent occurrences could not have been more different. They are a lesson in "what to say" and "what not to say."

First encounter:
Coworker: "Oh who is that in the picture?"
Me: "Oh that's my brother...blah blah blah...fragile x...blah blah blah"
Coworker: "I can tell you love him. That's so great. I'm glad he's doing so well."
The end.

This is what I would call a good conversation.

The second encounter:

Coworker: "Oh who is that in the picture?"
Me: "Oh that's my brother...blah blah blah...fragile x...blah blah blah"
Coworker: "They just want to be normal don't they."
Me: ......
Coworker: "Does your brother go to a program like Proact?"
Me: "What's Proact?"
Coworker: "Oh it's a place where people who can't do normal jobs and go and work doing small tasks."
Me: ".........................no, he has worked in several areas including a greenhouse, hotel and grocery store. In fact his older cousin has a steady job at a hospital and lives in an apartment with a roommate."
Coworker: "Oh, how great."
End.

This conversation makes me want to bang my head against the wall.  I know it comes from a place of ignorance and I try to remember that, however the "oh they just want to be normal" comment makes me fume.

Oh yes, they do. Don't we all just want to be normal. How quaint. Excuse me while I throw up.

If people are really curious why don't they say this:
"Oh I don't know much about that! Could you send me some information/explain that further" so I don't drive you insane?

The one area I can do nothing about is the child conversation. I wish I could just wear a sign:
 "IF YOU ASK ME ABOUT CHILDREN I MIGHT PUNCH YOU!"

I have made a choice to most likely not have biological children. It is my choice. I don't want to explain to you why I want to adopt, you should just respect it and move on. I know children are the light of the world and changed your life but I am going to have a different experience. Good for you, now leave me alone.

The only thing that is helping with this is reading adoption blogs. They are so helpful and also are great for venting purposes because adoptive parents often go through the same ridiculous questions as people who have children with disabilities. Basically, "oh that's different, how did that happen?"

It happened because nature always wins that's how it happened.

I'm sorry for the anger today. I just needed to get this out there. I hope it sparks conversation.

Until next time: Keep calm, and carry on.

Writing isn't a real degree

On Thursday some coworkers and I went out for a happy hour to belatedly celebrate my birthday, and to celebrate administrative professional week. Really it was just an excuse to drink because we’ve all been stressed. Anyone who works for a nonprofit will tell you that “campaign” and “annual report” season are stressful as heck.

We got on the topic of my time at Grand Valley State University and I was asked what I graduated with, and I said a degree in writing. My coworker gave me a look that said, “what the heck, what do you do with that?” I did my usual cut off before she could say anything and said, “at least it wasn’t liberal arts right?”

Really I was thinking a whole bunch of negative thoughts about myself because that’s what I do. The instant I think someone is judging me I feel the need to beat them to the punch and start judging myself, as if that will somehow offset what they are thinking. Can’t say it if I say it first right?

I am thinking of the song from Avenue Q. You can hear it here:

Writing isn’t useless. It’s fundamental. So many business people cannot write worth anything. That’s why communications people have jobs. To speak for business people who would say ridiculous jargon otherwise, same with politicians. I can honestly say that I write every day at my job. Even if it’s just a thank you note or a short email to our board, there is always something that needs a finer touch.

Maybe I’ve done everything all wrong. Maybe I shouldn’t have studied writing or not finished grad school or gone into nonprofit work. Maybe….but I wouldn’t have been happy. I wouldn’t be in Minnesota at a good job with good people to go out drinking with.

Maybe life is being judged by others for what you have or have not done.

Maybe I’m sick of being told that I should have done something different.

Maybe, as my boss says, I should handle my frustration by getting angry, rather than letting it drag me down. Get angry and change the world. That’s my motto for the day.

Until next time,

Keep calm and carry on. 

Top Gear and Video Games

As Ryan played Tiger Woods Golf version 300 (I have no idea which version it is, I just feel like there are a lot of them), I finally had control of the remote and what did I watch? Top Gear. Having recently found out that we actually get BBC America, our television viewing has changed drastically to daily marathons of Top Gear when we aren't walking the doggie, or making posts on my non-profit's twitter account. (https://twitter.com/#!/DARTS_MN ). 

Have I said that yet? I am the official twitter voice for my non-profit. Which considering that this is my first time even using twitter, is pretty amazing. 

Anyway, back to the subject at hand. I am currently watching a Porsche trying to beat a VW Beetle that is falling from the sky. This is the kind of amazing oddness that happens on Top Gear. And I just can't get enough. Especially when they keep showing the Bolivia episode, which is one of my all time favorites. 

We are currently under a Tornado Watch and Ryan just called to say he is on his way home from band practice, so I need to go get dinner ready. Next time I plan on talking about a new subject that has taken up prominence in my life, caregiving. Until next time. 

Keep Calm. 

Carry On. 

Normal Child Syndrome

Awhile ago I posted a video about a woman who spoke about "glass children" on my facebook wall. Below is the video if you want to watch it. "Glass children", in this instance, are siblings of children with disabilities. The reference comes from the fact that these siblings often do not receive as much attention as their special needs brother or sister, and therefore sometimes feel as if their parents are looking through them. 

I used to call this same phenomenon "normal child syndrome." I have a slightly different definition for it, however. My definition would be "a sibling of a child with a disability who feels that because they are "normal" they must be the most amazing child ever." Not because their parents won't look at them. Mine worked hard to pay attention to me. No, because they feel a sense of extreme guilt that their sibling will never have the opportunities that they have. Their sibling will never reach the heights that the "normal" child could possibly reach and so if you don't reach those, you are failing. 

I think this is why my mom was constantly worried about how much I was socializing. I was (and still am somewhat) an introvert. I felt no need to constantly be with people, and honestly usually reached a threshold of socialization and then needed to be alone. I still struggle with the idea that this could be linked to the fact that I am a "carrier" of Fragile X. I don't know if I'll ever know if that's true, but it's what I felt.

It's only been as recently as meeting my now husband Ryan, that I've really been able to find my own voice. I wish I could express how much freedom he has give me from just somehow completely understanding where I'm coming from, and giving me the confidence to know that who I am is okay. 

That is the core of it. When you are a sibling of a child with a disability, you are constantly wondering if you are good enough. Am I normal enough? Am I excelling enough? Did I go to a good enough college that my sibling can't even dream about? Have I made enough friends? Do I wear the right things? Does me as a person measure up to what I think I should be? 

You wouldn't think a sibling with a disability would be hard to live up to. But let me tell you. My brother is the most compassionate and caring person EVER. If someone else got in trouble at school he would cry. He hates seeing other people hurt. Even if they deserve it. If we lived according to my brother's rules there would be no war, hate, crime, anything that we complain about every day. THAT is hard to live up to. I don't always forgive and I don't always forget, but my brother does. Every single time. 

So, no, I can't completely relate to the woman in this video. I don't think I have her full sense of anger. I didn't experience everything that she did. But I can relate to the idea of not feeling good enough. Of feeling, in a way, invisible unless you are doing something amazing. 

I don't know when I'll get to a point where I can talk about these issues like the woman above does, but I hope when I do, I don't feel angry or sad or depleted. I hope I feel empowered, and finally, maybe, at peace. 

Success and Failure

Sometimes life is hard. Sometimes you fail. Sometimes you make an embarrassing mistake. Sometimes you get asked to do something and later wonder if you should have handled it differently.

I can’t count the number of times Ryan and I have worried about our jobs. One of us will come home feeling like the very next day we could get drop kicked out of our buildings. It’s not that we don’t like our jobs. It’s that we like our jobs so much we are desperately afraid of failing.

I’ve been afraid of failing my whole life. What I’ve come to realize however, is that different people have different definitions of success and failure. Success for some means having a high up job and lots of money so your parents can brag about you to their friends. “Look how successful my child is, they have a Ferrari!” Success for others means following in someone’s footsteps. Taking over for someone they admire because of their deep respect for their work. For others, and I would say for me, success is feeling like your job means something. That somehow because of what you do, someone will be helped.

I crave little notes from our donors about how we’ve helped them. I watch and wait for someone to say something about the difference we are making in the community, and usually I don’t have to wait long. For me, I wish money would go away, and we could live in a Star Trek universe where a desire to do good and better ourselves has replaced our money. How great would that be?

We have restrictions on alcohol, drugs, and guns because they are deemed harmful. We have very few restrictions on money.  Money isn’t harmful. It makes the world go ‘round. At least that is what we tell ourselves.

Failure for some is not having enough money. “Enough” being a relative term based on previously mentioned expectations for success. Failure for others means settling for something they do not enjoy or doing the same thing your family has done for years, just because it was easy.

By American capitalist standards Ryan and I are doing well. We both have jobs, enough money for a two bedroom apartment near the city, and a cute little doggie. Why then do we still have feelings of inadequacy? Why do I lose sleep at night over my future? Maybe it’s societal pressure. Maybe it’s parental pressure. Maybe, just maybe, it’s all in our heads and if we just let it go and make opportunities happen when we need them, then we will be okay, or perhaps even better than okay. Maybe we will be happy.

The very purpose of spirituality is self-discipline. Rather than criticizing others, we should evaluate and criticize ourselves. Ask yourself, what am I doing about my anger, my attachment, my pride, my jealousy? These are the things we should check in our day to day lives.

-Dalai Lama

The very wonderful purpose of Buddhism is to limit attachments, especially material objects, in order to connect more closely with your spiritual self; your true self and essence in this case. The Dalai Lama is the leader of Tibetan Buddhism or “the Diamond vehicle.” For more on Tibetan Buddhism and the difference between it and other forms of Buddhism…I’m imagining you’ll just Wikipedia this, so here are some key words:

Mahayana Buddhism

Theravada Buddhism

Pureland Buddhism (this is weird, but growing, especially in China and Japan)

Until next time.

Keep calm and carry on.

41 degrees in February

The twin cities are under a warm spell. It's been great for commuting, walking Penny, and generally avoiding freezing misery. It hasn't been good for winter sports, or winter carnivale in downtown St. Paul. I have heard many a groan that Michigan has received more snow than here. 

So what has been going on in the world of Stephanie and Ryan? Well recently, thanks to a work trip for Ryan, we were able to visit my friend Jessica in New Orleans. Picture above, from left to right are Jessica's cousin, Ryan, and my friend Jessica. This is actually in St. Bernard parish where she works in a charter school. It was great to see outside of the city. We even got to see the ninth ward where Brad Pitt and Angelina Jolie are building crazy beautiful houses where there was so much destruction and death. 

Jessica seems to love it down there but I could never live in that area. There is too much to rebuild. While they sure know how to have fun down there, there is a certain lifestyle you have to get used to, and MSP has spoiled us horribly. I can't wait until it's really spring/summer here. Walking around the city is the best part of living here. 

Our little Penny is doing well. She has grown incredibly more comfortable around us, and is now "more like a dog" as Ryan says. I can't help thinking that she would do really great in a fenced in yard where she could chase the squirrels she's obsessed with. But the park behind us serves us very well. Speaking of which, she is sitting by the door so I think I will take her out. 

Until next time. 

Keep calm, and carry on.