Invisible

Most people do not want to see Bug. Oh, they want to see the pretty boy they do not want to see his Epilepsy. I post about his seizures and I have watched the people that know him the most slowly pulling away. I still support them, I cancel my plans and I drop what I was doing and I offer an encouraging word or two, but he gets NOTHING in return.

I post for TWO reasons: 

1. So that someone can say they have heard of this before, their child has been through it and can offer some guidance.

2. So the someone can read and know that they are not alone. That there are other people out there in a similar position and they can commiserate.

The second is VERY important.

When you have a child with a chronic condition he/she will always be treated like damaged goods by someone. It's just something that you have to get used to. You will hear about how it is somehow YOUR fault that the child has this. it will be blamed on everything but what it really is: A fluke.

People do not want to be reminded that it could be them, that they could face this at ANY TIME and so I struggled with posting about his Epilepsy. And then I came to this conclusion: Screw perfection, the world needs to be made aware of how sudden and how all encompassing Epilepsy is. So I will post, unabashedly. And if people start to treat me like we are invisible than so be it. Someone will understand and someone may be able to help and I will let them know that they are not alone. That even though other people crave and are prideful of their perfect lives, we, who do not have perfect lives are still every bit as fulfilled. And we can see outside of ourselves and find the power to help others.

And I haven't made a potholder in years.

Examination and fury.

I have been called many things in my life, some of them true, some of them not as true as others but tonight I was called haughty. A new one for me. Arrogant, I heard once in the heat of an argument, but not haughty. 

I have always been told I was approachable, understanding and down-to-earth, I have made friends for mere moments to help someone get through the tough time they were having, never to see them again but feeling like I helped.

I am opinionated but I know when to shut my mouth, usually. Tonight, I hurt a little. Not because I thought they were my friends, I knew they were not, they have been aggressive with me before when I was trying to help, but because I fear they may be right.

Do I REALLY believe it? No. But I question it. As I believe all people should when an accusation of impropriety has been leveled against them. I re-read what I wrote that so infuriated them, I read it to Glenn, I mulled it over and came to one conclusion:

They must have been drunk.

De-friended and blocked. A little sadly but I do NOT need that judgement on top of everything else I have going on at the moment. I need people that will support and not just take. So, done. And not looking back.

Bogeyman

I remember when I was afraid of the dark. I would slip into bed, surround myself with all of my stuffed animals, pull my feet up as close to my chest as I could get them (because my sisters had me convinced that something would suck my feet under the bed) and tell myself stories until I fell asleep. On the days when my sister wasn't asleep before me, we would talk through the wall. I can't recall what we would talk about but I imagine it was planning the next summertime adventure.

If I had anywhere in the house to go. I would run there. Not just because that's what children do: run everywhere. But because our Father had drilled into us to turn out the lights when we were leaving the room.  Ergo, the only lights that were on, where the ones in the room where we were. So, I ran into, and away from the dark. 

As I got older, I loved the dark. I became a creature of the night. I would stay out all night, sleep a few hours (if that) and then go to work. My parents had no problem with this AS LONG AS I fulfilled my obligations. I believe the quote was: What do I care if you are sleepwalking, as long as you are sleepwalking at work. I would go dancing for hours, met some great friends and just enjoyed the liberty of youth. 

Once I started working at Nordstrom, I started having problems with sleep. If I didn't get at least 6 hours, I would throw up. I began a Prilosec regime and my need for sleep was less an issue. Still, every so often I would be quite ill in the mornings. I was like that for almost 10 years until Bug was born. 

Having an infant meant everything to us and we went months with little sleep. We worked out a pattern that fit us well, I would feed Bug and then sleep, Glenn would bottle feed him the second time and then he would sleep, I would feed him next and then Glenn, it meant we got at least two hours of sleep between feedings. Bug was awake every hour for food. He eventually began sleeping for 3 hours and then 4 and then 7. By 4 months old we were doing better. And then at the age of 2, he digressed.

He began to fight us to go to sleep. We tried Melatonin with limited success, we tried Benadryl, also, with limited success and in our desperation, we gave him a sleeping pill and it worked. Most of the time. So sleep became our friend again for about 6 months and then he began having seizures every night.

And I became afraid of the dark again. Running from place to place always to end up cradling my boy as he had a Grand Mal seizure. Now, even with his medications helping, I still hate to sleep and yet, I love that I get to sleep more. 

Last year, when he was having 10 and 20 a night, I wasn't sleeping, I would spend the bad nights researching what could be going on in his head. Researching medications. When we put him back on the Melatonin, it made his seizures worse as did the Benadryl. Only his Lamictal gave us peace, until he adapted to it. Then it was Lamictal and Keppra, and now it is Lamictal, Keppra and Zonegran. Sigh.

I look back now and think how childish it was to be so afraid of what wasn't there in the dark and yet, here I am in the same position. It doesn't seem childish at all. Nothing real is there to harm us but it is what is not seen that is the problem. There is a bogeyman in our house and we hate him but turning on the light will not get rid of him...yet.

Journalistic Integrity: Found

At one point in time, many years, but no so long ago, I wanted to be an investigative reporter. I wanted to be a Photo Journalist. I had an aptitude for one but not the other. And in the hustle and bustle of things that could not be changed I decided that journalism was not for me after all. Why? I was unable to fulfill my commitment to my Journalism Teacher because I was very sick. She moved on and I was left to write small articles, I was left behind so instead of staying the course and working my way back into the groove, I moved on to something else. But here's the thing: I didn't really. I just stopped writing as much. I was editing things in my head, taking stock and asking questions, forming concepts and talking about it but not writing.

Until now, I had no purpose to write. All things are already being talked about and I had lost my passion for prose. Until Bug.

He makes me want to write again. He makes me investigate and search for the story, the reason, the headline. I see him, daily, just being a 7 year old boy and not thinking anything about his Epilepsy, in fact I am not sure he thinks much at all but he is happy. He knows no difference. Our lives are forever different, but his is what it has always been and I moved to share that. Motivated to bring hope to people that *do* think about their Epilepsy and are having a hard time reconciling that their life is not all about their Epilepsy. So, I write again, hopefully I write with purpose and with clarity. With no passion but fact as proof. Hopefully.

How lovely...

Thank god I have a witness because if I didn't...

Danny and I were killing time waiting for Tay to be done at ballet. There is a Walmart across the street so I thought we would pick up a few things, including birthday presents for the soon to be 5 year old girl.

We wandered the store, picked up a bunch of stuff we sort of need and sort of just thought were cool and go to the check out.

In our cart were several toys for Tay and several for Bug. His toys are mostly pre-school and baby toys because he is in this oral phase at the moment and better chew toys in the baby department. We looked at the Dog toys but they were too squeaky.

So most of the ages said: 0-12 months.

The lady checking us out, oh, let's call her Flo, asked: How are you today?

I had been having a bad day so I said:" Eh, I am just Ok, how are you?"

She said: "Oh that's lovely."

????

If I had known what this next statement would cause..I would have said it earlier.

I turned to Danny and said:

"I think he will like these."

Flo asked how old he was.

I said: "7 but he has Epilepsy and Autism and some other ism's I am sure but he's a fun kid. Likes to spin things."

Flo said:

"How lovely."

????

Actually every few seconds, while I was talking, she would alternate: 'That's lovely', "That sounds nice", "Oh how lovely"...it made NO sense whatsoever.

"Yeah" I said quizzically, "he is getting better."

Flo said: "That's nice."

I said: "Yep, just happy he doesn't play IN his diaper anymore. That was a fun time." That last statement was a test. Flo did NOT disappoint:

"That sounds like fun."

????

Danny said: "Hey Mommy I like to finger paint".

I laughed. Flo, apparently thought it was inappropriate, because she shot Danny a pursed lips look. Maybe she WAS paying attention..through her fog of happiness.

By this time she had finished checking us out and we wished her a good day.

We walked silently away toward the front door. At the SAME TIME I turned to Danny, he turned to me.

I said: "Paxil anyone?"

Danny said: "What the hell was she on? Paxil you think?".

We laughed all the way out of the store. We laughed in front of the store. We laughed in the car. I mused about calling the store manager and recommending some random drug testing. Then we wondered what it would be like to work with her. And we laughed even harder.

Bad day...over.

Until I got home and got a second degree burn on my wrist from Bug's frozen dinner. :(

Still, giggling about Flo.

Ugh...women.

The women I have in my life are few and far between. Why? I don't trust them. TADA, that simple.

With most of the women I have known, everything is a competition, the problem is, they aren't overt about it. They slowly chip away at the object of their self induced competition and strip all the self worth and value from him/her. It's disgusting. They smile and support, all the while, they are bitching about what they previously had openly supported in the other room.

The women I do have in my life, are no nonsense and when they ask people how they are...they listen to the response and don't turn the conversation into what THEY did for the day. It's takes a natural course and everyone is validated. They do not feel threatened by anything I do because I do not compete and they know that. When I help, they know I help because I love them and I want to help. Not because I want anything in return.

I have NO respect for women who defend other women simply because of their sex. I do NOT support women who degrade the people in their life to get what they want, and I have NO respect for a woman who constantly complains about her partner openly and then acts all hurt, betrayed and SURPRISED when she is left alone.

And yes, an article I read today set this off. A few of my friends support this 'celebrity' and so I will not name names, but OMG am I sick of hearing about she was soo wronged. She was mean, self centered and only wanted to come out of the relationship looking like the abused partner. Ugh. She made her choices, she openly verbally abused people time and again, she makes women look like emotional time bombs and intellectual midgets. Maybe a lot of them are...but not the ones I hang with. I am editing THOSE women out.

What is that smell?

Depending on your temperament and how well drugs get blamed and then the blame gets shifted, you might consider Thalidomide a wonder drug or the scourge of Pregnant Europeans and their children in the 50's and 60's. Really, the research goes either way: Yes they knew it was harmful to the unborn or no: they didn't and when they did they pulled it off the market.

It can be given to conspiracy or it can be the catalyst for stricter testing of pharmaceuticals before they are marketed. But, you see, it's failed in both regards.

As a conspiracy: It's back on the market. Thalidomide has it's uses. And it helps wonderfully in those specific instances so: still making money. Safer, and with a bad rep, but still successful in helping people.

As for the poster child for testing: MAJOR fail here. It falls back into the conspiracy arena at this point because, well, they are still releasing products with unknown effects on humans because no one tests on humans and it's impossible to predict how a human being will react. Pigs are close, but humans are too varied.

And that's the rub for the Vaccine - Autism link. Deny what you want, but the truth is: Something stinks in Denmark.

I will not get into the Vaccine - Autism link. People are too emotional about it. I will say: Bug is no longer getting ANY vaccines and Tay is.

From the Huffington Post:

Robert F. Kennedy Jr.

Chairman, Waterkeeper Alliance; Professor, Pace University

Posted: March 11, 2010 11:25 AM

Central Figure in CDC Vaccine Cover-Up Absconds With $2M

A  central figure behind the Center for Disease Control's (CDC) claims disputing the link between vaccines and autism and other neurological disorders has disappeared after officials discovered massive fraud involving the theft of millions in taxpayer dollars. Danish police are investigating Dr. Poul Thorsen, who has vanished along with almost $2 million that he had supposedly spent on research.

Thorsen was a leading member of a Danish research group that wrote several key studies supporting CDC's claims that the MMR vaccine and mercury-laden vaccines were safe for children. Thorsen's 2003 Danish study reported a 20-fold increase in autism in Denmark after that country banned mercury based preservatives in its vaccines. His study concluded that mercury could therefore not be the culprit behind the autism epidemic.

His study has long been criticized as fraudulent since it failed to disclose that the increase was an artifact of new mandates requiring, for the first time, that autism cases be reported on the national registry. This new law and the opening of a clinic dedicated to autism treatment in Copenhagen accounted for the sudden rise in reported cases rather than, as Thorsen seemed to suggest, the removal of mercury from vaccines. Despite this obvious chicanery, CDC has long touted the study as the principal proof that mercury-laced vaccines are safe for infants and young children. Mainstream media, particularly the New York Times, has reliedon this study as the basis for its public assurances that it is safe to inject young children with mercury -- a potent neurotoxin -- at concentrations hundreds of times over the U.S. safety limits.

Thorsen, who was a psychiatrist and not a research scientist or toxicologist, parlayed that study into a long-term relationship with CDC. He built a research empire called the North Atlantic Epidemiology Alliances (NANEA) that advertised its close association with the CDC autism team, a relationship that had the agency paying Thorsen and his research staff millions of dollars to churn out research papers, many of them assuring the public on the issue of vaccine safety.

The discovery of Thorsen's fraud came as the result of an investigation by Aarhus University and CDC which discovered that Thorsen had falsified documents and, in violation of university rules, was accepting salaries from both the Danish university and Emory University in Atlanta -- near CDC headquarters -- where he led research efforts to defend the role of vaccines in causing autism and other brain disorders. Thorsen's center has received $14.6 million from CDC since 2002.

Thorsen's partner Kreesten Madsen recently came under fierce criticism after damning e-mails surfaced showing Madsen in cahoots with CDC officials intent on fraudulently cherry picking facts to prove vaccine safety.

Leading independent scientists have accused CDC of concealing the clear link between the dramatic increases in mercury-laced child vaccinations beginning in 1989 and the epidemic of autism, neurological disorders and other illnesses affecting every generation of American children since. Questions about Thorsens's scientific integrity may finally force CDC to rethink the vaccine protocols since most of the other key pro vaccine studies cited by CDC rely on the findings of Thorsen's research group. These include oft referenced research articles published by the Journal of the American Medical Association, the American Journal of Preventive Medicine, the American Academy of Pediatrics, the New England Journal of Medicine and others. The validity of all these studies is now in question.

Citations
1. http://www.cphpost.dk/news/international/89-international/48229-researcher-accused-of-cheating-uni-out-of-millions.html 
2.http://www.safeminds.org/news/pressroom/press_releases/20040518_AutismAuthorsNetwork.pdf
3. http://www.nytimes.com/2010/02/06/opinion/06sat3.html
4. http://www.huffingtonpost.com/robert-f-kennedy-jr/time-for-cdc-to-come-clea_b_16550.html
5. http://www.ageofautism.com/2010/03/poul-thorsens-mutating-resume.html
6. http://www.rescuepost.com/files/thorsen-aarhus.pdf
7. http://www.cphpost.dk/news/international/89-international/48229-researcher-accused-of-cheating-uni-out-of-millions.html

Really

Yes, a blog entry. Oooh. Ahhh.

It seems I write almost everything that goes on in our lives on Bug's Blog or Tay's Blog or this blog or that blog...which is funny coming from someone who was so very ANTI-Blog. Oh well, we all change. 

So, maybe I might just start up this one again. Heaven's knows I don't type enough yet..of course...I wonder how many calories 90 words a minute burns? Hmm?

Ugly

The great McD's cold has run it's course. Tay is better, Bug is better, I am not. This is what happens when my immune system goes on high alert for too long. I wake multiple times a night gagging, yeah it's gross but you try living it. A few more days of this and I will wake up puking. I TOLD the Doctor this was going to happen, I ASKED him to suppress my immune system and get rid of the sinus infection BEFORE I got something to compound it and I was told to go home, take it easty, snort some Afrin (which I had sucessfully weaned myself from after a few years) and do some OTC medications to relieve the symptoms. And now, NOW I am this close to puking multiple times day, I have a cough, sore throat, my ears hurt and I am dizzy. Sounds like fun doesn't it?

So I am going to see my allergist again and give him ONE more chance to help me out. I will be ugly about it. Very. I will make sure I take NO OTC or prescription meds, I will make sure he sees me in all my raging sexiness. IF he doesn't give me an antibiotic and immunosupressant, he will not be my Doctor anymore. Enough is enough. So let the ugly begin, actually, let the ugly stop. I am really pissed.

Does yours do this too?

When I spill a drink, or whatever, or when the children do and I am nearby, I curse, get a towel, clean it up, decide how much effort it requires to look passable and then go back to whatever I was doing. Doesn't matter who is there with me, I just clean it up. OK, I make Tay help if it was HER drink or HER fault.

When Glenn spills a drink, or whatever, or when the children do and he is nearby he curses at ME to HELP him clean it up.

Anyone else own one of these?

Just curious.

Green eggs

I was driving home tonight, having spent a rousing round of 'guess where the book I want is' at the Barnes and Nobel, when I got to thinking (I do that when I am alone). I pondered the things, the really small things, that we take for granted everyday. Not the existential stuff, life and all that. The really simple tangible stuff. Like the fact that I was driving at a rate my Great Grandmother couldn't even fathom. The blackness of night all around me, red tail lights ahead of me, Bon Jovi on the new stereo speakers and the tires spinning at a rate of 21.48 times per second getting me swiftly to my destination. Not that Great Grandma DIDN'T think about traveling at a fast rate, I am sure with a dozen kids running around she certainly would want to expedite delivery to the required destination. It's just, I imagine these things weren't important to think about to her. Why would they be? If she wanted to go anywhere, it was a major event. One just didn't jump in the car and head to the book store. Who gave a crap about speed when she needed to figure out how much food to take?

I also thought how many times I have opened my eyes to the unfairness and injustices of life. How many times I saw the ugliness and yet opted to search for the beauty. How many days I accepted the strain to achieve balance readily. To look at the good things, the simple things, to look beyond the moment. To stretch into that being within us that gives us insight and perspective. To not outweigh the good with our own self-indulgent selves. We shoot down what would take us up, by seeing what had not happened that we wanted to happen. We break our own spirit by deeming as 'bad' what others might be grateful to have.

I recognized that my days are stitched non sequiturs. I wake up, maybe after a good night's sleep, maybe not, to breakfast, a yet to be determined food, and then I check email. The children eat, and the begging to go outside to play begins, these are the constant. The randomness begins AFTER breakfast. Will Bug play with anything inappropriate and create a mess that is gag-worthy? 5% chance of happening so we move onto will Taylor bring home a friend. 25% chance of happening. Bug needs a diaper change 100% and Tay will beg for something sweet and completely unsuitable for the time of day, also 100% but today...here's the really random stuff, the nice neighbor walked Taylor home. She told me she is unexpectedly pregnant. I would be thrilled, but my thoughts are not everyone's thoughts and I can not judge someone on what MY reaction would be. THAT invalidates who they are and what they are feeling. She hasn't decided yet how happy to be, they thought they were done. I get that. I really do. I also believe, perhaps naively, that she will be thrilled eventually. She did the whole trying to conceive thing, all the tests and what not, she understands what it take sometimes. Today, I also learned about the frontal lobes of our brains. The most developed part of our brains, the sets us apart from animals. In most cases anyway. And that led me to the book store. I wanted to learn more about our lobes. 

But, not only did they NOT have the book I wanted, I learned that either no one writes books about epilepsy, or they just don't think that they need to carry any. In fact, the Chemistry and Biology section was one bookcase. Physics and Astronomy: also one bookcase. If you want to learn how to bake cookies or entertain guests you have to peruse 6 bookcases. An entire wall of cook books. Eating is important, but so is Chemistry. Cooking is chemistry. But not as many people want to actually learn what ares of our brains control speech and motor functions, they want to learn how to prevent that green film on a hard boiled egg.

That's what I get for thinking. Green slimy eggs.