Manic Monday...

What is the most useful gift you’ve ever been given?
My computer from Ed 5 years ago. I do have to say though, out of all my wedding presents, I have this clock. And it's from a old friend from H.S. It's a blue clock, plastic, with a yellow, IKEA looking bird as the coocoo that swings at the top. Very basic, very plain. And it has been in my art room for over 6 years now. Still to date the most creative (shocker it was from Sean!) and one of the most memorable ones.

Name the most terrifying moment of your life so far.
My sister going into brain surgery in January of 2005.
Or when I was going to my midnight shift, in the early winter that same year (2005) It was one of those cold as fuck, black ice (Thanks to Wikipedia her is some Black ice info for you... also known as "glare ice" or "clear ice," typically refers to a thin coating of glazed ice on a surface, often a roadway.

While not truly black, it is transparent, allowing the usually-black asphalt/macadam roadway to be seen through it, hence the term. It is unusually slick compared to other forms of roadway ice.

Because it contains relatively little entrapped air in the form of bubbles, black ice is transparent and thus very difficult to see (as compared to snow, frozen slush). In addition, it often is interleaved with wet road, which is identical in appearance. For this reason it is especially hazardous when driving or walking because it is both hard to see and unexpectedly slick)

So coming off the highway, I was merging (thank god late and with no traffic) I hit a patch of black ice. I spun out so badly, the officer said I did the "pit maneuver" I spun, and hit the guard rail 3 times. Then leaving myself sideways on the ramp... bad news is, it was foggy, dark, and since I was sideways oncoming traffic from the highway could not see me.

Oh and did I mention I was on my cell phone with my poor mother who will forever have me screaming etched into her brain? I was fine, but the fact that I was stranded, and in a bad spot was no good. Thank goodness while waiting for the city police to get there. The city salt truck stopped and checked on me. He decided to use his big truck to block all traffic till the city got there. My dad picked me up for work, and the car was toed to the shop.

Nothing I did wrong, Just that damn black ice. Scared the shit out of me. Again mom, I am sorry!!

One hot summer afternoon, while walking through a parking lot at a large shopping center, you notice a dog suffering badly from the heat inside a locked car. What would you do?
Call the cops just like I always do. People think they will just be a minute, but they don't understand the effects on how fast and how hot a car can get. Not cool, and I will be the one to get your plates, and report your irresponsible ass.

Saturday's Secret. The Big Picture

Here's a secret for you. I was scared. Out of my mind. To the point where my mind blocked the reality of what was really happening. It was probably the longest 8 hours of my life. Longer then waiting for my children to be born in the hospital, this was my sister. Her brain, and even though I knew (or we sure as hell hoped so) she was in great hands.


This is my mom. This is the stupid, most uncomfortable waiting room ever. Behind her is Au Boun Pain, the overpriced food, danish, and coffee restaurant. I think me being there made my mom be stronger then she may have wanted to be.

This is my dad. (he's hiding) he tried to sleep in the most uncomfortable place on earth. Or just make it all go away. It didn't work. So here is what happened...
This above is a diagram of what is in my sister. Below you will see two weeks later, we are back at the hotel for the generators to be put in her chest. So what you see here are the staples and scabs from the surgery when they went INTO my sister's brain. INTO...
Here on the side is where it gets confusing. From the brain there are these leads (wires) that go to here, and connect to more wires, that go down her neck, over her shoulders and into pace maker type generators that we would hope would tell the brain that certain muscles are over working to the point of keeping Susie's head always to the left, to the point where it is cutting off her voice, makes it near impossible to eat, drinking is a joke, and now the Dystonia makes her hands cramp up. Way to not only take away her voice, but lets fuck up her hands so she can't sign to us either.

So again the Saturday Secret. Was I was scared out of my mind. Maybe I didn't show it like people thought. Most people asked if I had a breakdown, or how I could cope with this.

Well folks here is the answer to how you cope. You just do.

You realize that you freaking out, will do you. The person or persons involved, and the victim themselves, absolutely NO good.

Sure, cry, question life, the "creator" and all that you want. But wigging out constantly will only stress you out, in a situation you can only hope to understand. You can't change it. (If you can let us know) I was asked why I didn't take more time off work. (the person asking took off 3 days when her Gramma was diagnosed with Cancer. She said she would have needed weeks to deal with what I just went through) I just took off the days needed for the surgery, I stayed at the hotel with my parents, and Ed came up everyday between work.

If I let myself just freak the fuck out... well I can't. So maybe that is the secret. I was scared, but we all know that. But I really just can NOT for the life of me, even try to freak out. Even in totally scary situations I just can't. I laugh at serious situations, smile when I hear about catastrophes. Not because there funny, no way. But it's like my mind is much stronger and just won't let me break.

I mean I cry, alot, about 9/11 and Susie, flood victims, and all sorts of tragedies. But what I am trying to say, is just during the situation. I seem to be clear about what needs to be done. I am not in the corner rocking myself, I am just there. I see it. Deal with it. And deal with the emotions later. Much later.

Maybe this makes me a freak, or heartless. Maybe through all the asshole family members (Mr. Bill at Thanksgiving 2005, Rich and Lila 2008. Dealing with just stupid ignorant people, the just mentioned, or shit talkers, Amanda, and thieves, Heather, or just rude, Lauren) Those people most I hate, some I just don't let get as close to me anymore. Those people. Those people are the ones that made me. You take all that and combine it with the most AMAZING support system of my parents, Susie, Ed and his family, and my best friend Jen. Knowing that I still can keep friends from 25 years ago....

That folks is what makes me tick. Some shitbrick sends me anonymous emails and gets angry with me? Oh you have no idea. I may seem small, and kind. A energetic girl with a lot of sass. Well it takes a lot of hurt combined with alot of love and support.

I think i got off my track, but my secret is I may seem emotionless at times. But sometimes you have to look at the big picture.

Yes Susie had 8 plus hours of brain surgery. And yes I was scared shitless. But I was able to control it, because I knew that freaking out would do me nothing.

I know my Aunt and Uncle died. Who's fault is it? That seems to be the question at hand. Lot's of people want to blame my cousins, some douche bags (Lila and Rich) even think to blame myself and my mom. No folks, my Aunt drank and smoked herself to death. My Uncle was heartbroken, attempted to move on. But just wanted to be with my Aunt. I hate the way things unfolded, it makes me so sad, and I think of them often. But to see the bigger picture, you have to see that my cousins do make mistakes. But being raised in an abusive home, and with poor parenting, well society is filled with people who's parents just didn't finish there job. So I see parents that had kids, enjoyed alcohol, smoking and not being parents to much. As a result the kids were not taught the common sense of work, living and money. Did this mean they didn't love there kids? Not even close. I know they loved there kids, but the sickness just got in the way. Now with the parents gone. I only hope the kids either on there own or together, help each other to move on and stay strong. Big picture.

In the back of my mind a recession is always at hand. I know that the Village raising our taxes out the ass, is not helping us financially. We own a home that we could afford in 2003. But almost 6 years later and $300 a month more just for taxes, kills a mortgage payment. I don't know what this recession we are going to go into will entail. I know that we have parents that will help us all they can, and I have friends and family that are close for support. I can't freak out yet, because, I see the bigger picture of just getting through it, bearing down, and moving on.

Kinda like childbirth. Sucks, hurts, lots of painful, and annoying things happen in that long 10 months. So when they tell me it's time to push, I realized I couldn't freak out and change my mind. The kid was either coming out one way or they make the way out. So I just did what I had to do. Push!

And the easiest one. Traffic. Seems minor to what I have already talked about. But in all seriousness. Traffic, will send your anxiety through any car roof, in a second! I don't like to wait any more then the next driver but, I really don't get the point in having a FULL LONG ASS conversation about how horrible the drive is, or ON and ON and ON about a driver. Seriously, if' it's a long light. They say to time it. No really the longest light is usually only 45 seconds. And traffic, yes it blows, but you can't fly over people, so just suck it up. I love watching the spaz's in there cars waving there hands. Breath people, just remember it could always be worse.

So before you freak out, try to look at the big picture. And then just take it one step at a time to get there.

Dancing in the rain

I have always enjoyed this. Not the sideways rain, and heavy winds, kinda rain. But the straight downpour kind.

The kind where it's still warm outside, but the rain makes it feel good. I remember doing this as a kid. But then not again until right after my daughter was born. Mia was just a few weeks old, and it was one of those days where it's sunny, then rainy. So while Mia slept. I went out to the back yard, into the pouring rain, threw out my hands and embraced the rain.

It reminds me to stay grounded. To remember that it's the simple things in life, like the rain, that are good basic reminders to be happy about what you have. Enjoy the sun, and rain. Even if the sun is to damn hot. And the rain just won't go away. I know snow is a pain. But I love it when it has that dazzling diamond effect over it, after a snowfall.

I know that rain doesn't hurt, and we won't melt either. So today, as the downpour hit. I asked my sister, Susie, if she wanted to go dance in the rain. Since her Dystonia keeps her from speaking she couldn't fight me off, besides a good head shake no. And since Susie, is about 80 lbs soaking wet, I just scooped up my wee sister, and off we went out the back deck doors, into the pouring rain, I had to get her far enough away from the door, so I carried her to the garden steps, set her down. And she just looked at me. I said "you won't melt. This is fun right?" A warm smile came across my sisters face, and we scampered down into the rain soaked garden.

My mom yelled out "what are you two doing?!" I of coarse respond with "duh, where dancing in the rain. Wanna join?" Mom says a "no, but thanks. And don't drag Mia out there, she will get all wet"

As my 2 year old daughter, peers out onto the deck. I instantly run up to the doors, scoop her up, and whisk her out to the garden too. She is laughing, throws her head back and enjoys the rain as if she had done this a thousand times.

Maybe it was just seeing her mommy and Aunt Susie enjoy the rain. But it was what made me so happy today. To see her enjoy something so simple, and make a memory from it. I hope there are many more days to dance in the rain with my Mi and Susie.

I found some books for you, Susz.

Dystonia 4 (Advances in Neurology)
by Stanley Fahn, Mark Hallett, Mahlon R DeLong

Clinical Diagnosis and Management of Dystonia

The Official Patient's Sourcebook on Dystonia Disorders: A Revised and Updated Directory for the Internet Age
by Icon Health Publications

Learning, Coping, Living: A Woman Who Describes Her Life Living Successfully with Dystonia, A Neurological Disorder
by Bette Levine



Susz, after reading your last blog post, I was intrigued to go find books on Shelfari. Check out the books above, some have links. So just click on them. Or down in the right column you will see my "Shelfari" account. You can click on the bookshelf, and see the 4 books "I am planning to read" those are the books above.



If anyone has read these books, please let me or Susie, over at "Inside Susie's Head" which one is best.



Maybe we could get them at the library. If the library doesn't have them, maybe we could ask them to order them in for you to borrow. I would like to read on this too. Maybe there is something there that could help us better understand this Dystonia.



Love you. Gack

Mia is perfect

No I am not bragging about my Mia. Well just a little but I need to tell you this story for you to understand...

In July Mia went in to the Doctor because she was complaining that her ears hurt. The Doctor looked at them and she was fine. Maybe since we had swam all morning they were bugging her a little.

Dr. B was listening to her, and said "Don't freak out, but I want you to have her see a Cardiologist for her heart. I hear a murmur" Now Ed, thank god was not there with me. It was just me. I knew that both me and my dad had one, and grew out of them. So I was concerned, but not to the level I knew Ed would be.

It wasn't something we talked much about. We won't hype up a situation until it's well underway and we have a better understanding of it. So it sat in the back of our minds, until last week.

A very nice Cardiologist from Rush St. Luke's in Chicago, came to our Hospital and checked Mia out, she needed an EKG and she did SO well, she sat perfectly still, and loved the little black stickers they put all over her.

After the test the Dr. and nurses left the room for about 10 minutes to go over the results. The Dr. came back in to tell us, that Mia does have a murmur, but it is nothing to worry about.

Dr. also said "Mia is perfect. Her heart is perfect. Take her home, and enjoy your family" then he left.

We cried. We could finally breathe again. A sigh of relief filled the room. We hugged and smiled, and just talked briefly. About how happy we were, how we were both worried about a future of nothing but Hospitals and Doctors, specialist and nurses.

The fact that we can move on with our life, attempting a "normal" life with our kids, is not something we have ever taken for granted. Personally speaking, my parents and I have been to way to many Hospitals, Doctors and Specialist. Trying for over 10 years just to diagnose my sister, Susie, with Dystonia. And now another 8 years trying to slow it down.

I am grateful for the family we have, the house I live in and the people that I surround myself with. My heart (no pun intended) goes out to all the parents and siblings that deal with health issues on a daily basis.

And for those of you, who haven't had a direct impact in your life. From someone who is in constant need of a doctor or a hospital. Count yourself lucky, but as Susie says "somebody always has it worse" your right Frances, your damn right.

We love you Mia. And I am glad your perfect.

Friday's Featured Blogger

(Above is a picture of Susie with myself and Mia last Halloween, in Downtown Morris)

Inside Susie's Head!

For those of you new to my blog, Susie is my sister. She is 27 years old. And man if you thought I was feisty and spoke my mind. Yikes! Susie wins hands down!

Besides sarcastic, Susie is sweet, funny and loves her niece and nephew! Swimming is a favorite, and now that I have a pool I am sure to see more of her. Susie LOVES her General Hospital Soap Opera, tons of shows, and if she's not on the GH forum's or watching her shows, she is reading a good book. Usually on Anne Frank. And even though Susie's Dystonia holds her back from physically speaking. She always has something to add.

Hope you all enjoy her blog. And hopefully this will inspire Susie to blog more often. Oh she has the time. Just pull yourself away from the General Hospital forums, and blog once a day, we readers want to know what your up too! I don't care if you tell us what you watched on t.v. or what you ate today. BLOG! Blogging will be a good way to scrapbook, via online, for your niece and nephew to have and pass on.

So everyone enjoy Inside Susie's Head. How she tells it like it is, and does not hold back. She has only a few readers and wants more, so go to her site, and show her some Blog love by leaving her comments!

Congrats on being this weeks Friday's Featured Blogger!

Maniac Monday on Sunday

Using no more than 10 nouns, and ONLY nouns, describe yourself.

Mom. Friend. Artist. Photographer. Sister. Teacher. Reader. Lover. Enthusiast. Talker.



If you owned your own store, what would you sell?

Oh this is easy! "Creative Maniac's" will be the store where you can buy craft & art supplies, fun house and garden decorations. Plus an area to hold classes, from scrapbooking and card making, to maybe garden lessons or tips on decorating. I of coarse I can't do this myself, I would need the only person I have ever wanted to own a store with, my mom.



We have both dreamed of having a store, to sell and share what we both love. I can imagine a house redone to be crafty, artsy, and just what everyone wants to visit. With a big wrap around porch for snacks and relaxing. And the whole place surrounded by an amazing garden. Plants from my mom and me, plus donated from friends and just people stopping by.



I think it can be done, but not now. Down the road, me and my mom...



If you were to name the most comforting thing for you to hold in your hands, what would it be?



Ed's hand is first that comes to mind. Knowing that when I hold his hand, I remember that we are one team that can do everything and anything together. I am also comforted by Mia's and Alex's hands. Knowing that I am comfort to them when I have there hand.



My mom or dad's hands too. I still go to them for comfort, and holding there hand is always a good way to start. (even though a relaxing day in the gazebo, sipping coffee is a good way too!)



My sister Susie hand. Susie needs me, because of her disorder, Dystonia, she can't communicate with others through speech, so I help out. And when we are in a crowd I grab her hand to lead her through. But as much as she needs me, I know that I will always need her hand to just remind me that I will always have my sister.



This was a very emotional Maniac Monday. It was a good one, probably one of my favorites.