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. 

Penny for your thoughts

This is our dog Penny and she is our forever dog. Things to know about Penny: she is a mini-pinchser/dauschound mix (no I cannot spell either of those words). She LOVES other dogs, they are all her best friend and she must play with them. She also loves children. She isn't interested in toys unless other dogs or children are playing with them and she won't eat unless someone is home with her. 

In short she is a bit strange and is the first dog I have ever met that isn't motivated by food. In fact she will turn her head to food. We love our crazy ninja/food despising dog and so do the people in our building. They think she's adorable and that it's great she doesn't bark...ever...seriously....and when she does it sounds like she's afraid she's making too much noise. Instead she does these little whiny noises when she's sad because the toothless wonder chihuahua down the hall won't play with her. Imagine a tiny chihuahua with no teeth and a tongue hanging out the side of her mouth. Did I mention Penny loves ALL dogs. I think that dog is creepy and weird. But not Penny. That could be her new BEST FRIEND!!! AHHHH!!!!

Poor rejected Penny is now sitting next to me on the couch all sleepy like because that's another thing she won't do without someone around, sleep.

I should say that work is going a whole lot better, especially since I've been able to incorporate social media into my job. I am now the twitter master. Never thought I would be the ultimate authority on twitter but here I am. Of course it's not that hard in an organization who works with people who get annoyed by email. Not all of them are like that, but some, some think they are allergic to electricity. I kid you not. This donor gives us lots of money, but they are a little crazy. If they found out we had wifi they would disown us.

Ryan seems to still like his job. He said he had fun working on Indiana stuff today. I like how his projects always involve states. Because I was a scorer for a little while, I understand a lot of what goes on at his work. Therefore we sometimes get in these weird conversations where I'm pretty sure people are confused as to why, "New York is a pain" and "we hope we get Wyoming." States suddenly become a single entity that his company must interact with.

Because of Ryan's work, I am especially interested in NCLB (no child left behind) and what is going to happen with it. His work has literally changed my perspective on education. I thought I knew.....I really knew nothing. Testing is now a love/hate relationship for me, because now I have seen why it's good, but I also know why it's bad. So many necessary things are this way. Some states (and I know this for a fact) really could care less whether their kids are as smart as others. They don't want to compare, they just want their kids to be good enough for them. And sometimes, that means setting a painfully low bar for expectations. If they keep getting away with this, we are going to get nowhere. And that's my rant for the day.

Until next time. Keep calm, carry on.

Not So Lucky

You can't tell from this picture, but our foster dog Lucky had an issue with guys. 

Lucky would be fine when I was home. Below  is a picture of him all curled up in my lap. We knew he was much more cuddly with me, and we knew there was probably issues because when he had come in to the shelter he had bb gun pellets stuck in his leg. Now we, and the shelter, are guessing that a guy hit him with those pellets. Hence the freak out session when I stayed at an event at work, and Ryan was left alone with him for the first time. 

So we said goodbye to Lucky. We are fairly sure that we are going to wait on the dog issue until we have a house. We are too heartbroken and we are enjoying our freedom too much to attempt to get another dog. I would like to thank our friend Autumn for helping to give us some advice and help us make the right decision. You are our official dog guru. 

So how are we doing? Based on today I would give the following ratings to these 2 different areas in my life:

Love: 10

Work: 5

Work is not fun for me right now. As of today I am incredibly frustrated, and we'll see what happens. I am praying to Krishna that things get better. 

Ryan rates it this way:

Love:10

Work: 8

Work is going much better for Ryan. So even though I'm frustrated, the lesson is here is that love conquers all. I think....either way we are enjoying our life and feeling blessed to have what we do. I am honestly probably giving work a low rating based on a singular event and am therefore being unfair. We all have good days and bad days, and today just wasn't that great. 

I wish my writing was better. Take that last sentence. That is pitiful and wrong. However I am too tired to fix this entry and make it better. Hopefully as the year progresses, I will be able to make the steps towards being a better writer. It's my unofficial new years resolution. 

In the meantime. 

Keep calm, carry on. 

City of Lights

While my camera isn't the best for catching movement, I did manage to get a few photos of the holidazzle parade in Minneapolis. The theme this year was fairy tales and below is Ryan's favorite, Pinocchio! 

A few days after Ryan played the drums with the retired Minneapolis police, he had a holiday concert with his symphonic band in one of the richest counties in MN, Edina. His band, South of the River Community Band, does three holiday concerts during the season. It's great to see Ryan keep up with his drumming. Hopefully I can get him to write one of these blog entries and talk about his drumming plans.

The city of Minneapolis is beautiful, especially at night. The best part about moving around the city is that in the winter you do not have to go outside. There are skyways everywhere to walk around without braving the freezing weather. I love Michigan, and always will, but I love my twin cities too. If only we had teleportation. Then maybe I would never leave. 

Until next time, keep calm, carry on. 

The Juggling Act

Part of being married is juggling families. This is especially hard when your families live in different states, neither of them being states YOU happen to live in. Our compromise was to switch holidays. Each year one family gets Thanksgiving and one gets Christmas so hopefully neither feels slighted. 

This year’s travel plans did not get off to a good start. The closest airport to Ryan’s family is in Charlotte, NC and it’s a US Airways hub. We were on the last flight out on Sunday. The flight was packed with people who had obviously been getting in some beach time before the bitter cold Minnesota winter. We pull out of the gate and then stop. 

Never a good sign. 

They tell us at first that it’s a computer error. After a half hour on the runway, we go back to the gate and find out our engine isn’t getting fuel. Basically if we had taken off eventually we would have dropped out of the sky. Thank Krishna* for computer warning systems. So while we are all glad we are alive, we now realize we are going to be stuck in Charlotte for the night. 

Everyone is making phone calls to work and family with varying degrees of annoyance in their voice. By the time US Airways gets everyone rebooked and in hotels, it’s 2am. Ryan and I only get around 3 hours of sleep before we have to crawl out of our hotel room, which doesn’t have shampoo, and get over to the airport again to make a connection in Detroit and finally make it back to Minneapolis.  I wish I could have gotten a picture of Ryan and I sitting in the Coney Island restaurant in the Detroit airport, my hair a frizzy, slick mess and Ryan with odd spots of facial hair, both with bags under our eyes, chowing down on a greasy burger.  Simultaneously horrifying and hilarious. 

It was great to be in Charlotte where it is warm and Ryan can go golfing with his dad and brother. Where we can hang out with his crazy dog Rudy and watch the Notre Dame game we had to record. Most of all I’m just glad he gets to see his family. Michigan is just a little easier to get to than North Carolina from Minnesota. My parents are even coming up for “spring break,” the perks of my mom being a teacher, and my dad having 6 weeks of vacation a year.  

Who I really miss is my brother and my friends Heather and Ashley. It’s difficult for my brother to fly on his own, and it’s really hard for my friends to find time to get over to MN, or for me to get over to MI for that matter. They are the people that keep me sane and laughing. I wish they were a building away like they used to be rather than a state and a lake away like they are now.

But we can’t have all that we want in this world. In the end we need to be thankful for what we have. And what Ryan and I have is a lot. 

Until next time, keep calm and carry on. 

*A note as to a) who Krishna is and b) why the heck I’m thanking him. Krishna is a very well liked Hindu god who is popular in their mythology. I have started to “thank Krishna” because it’s less offensive than thanking God or gods or Jesus or Allah, because no one knows who Krishna is outside of 1 billion Hindus and some people who have taken the time to study this stuff. ANYWAY,  it’s a way for me to get around my tendency to use God’s name in vain and offend someone. There is probably a Hinduism post coming, be ready.