9/11

The phone rang, 11 years ago, and not unusually, Glenn answered. What he said next and what we witnessed next was unreal, horrifying, heart wrenching and unifying.

Turn on the TV.

And how I wish we hadn't. I wish I hadn't watched that first tower burning, how I wish we hadn't seen the second plane hit and watched, through tears and the news channels, in an incredible use of poor taste, played those images over and over. It was as if the news channels were almost gleeful that something had happened that could now devote hours upon hours to explaining and analyzing, criticizing and inflaming a response. It was NOT all major networks finest hours. I wish I did not have those images of people, wives, daughters, sons, fathers, jumping from those burning buildings, oh I wish those images were not seared so deeply into my sub conscious. I wish I had not heard myself saying NO, NO, NO so much that I heard it in my dreams for weeks.

One unimaginable thing after another that day. And yet, someone had imagined it, had practiced it and had relegated those people, who were doing the most basic of things, working, to being victims. And their families, to being Widows, and Widowers and never giving them the chance to say 'I love you' one last time.

As the first hour passed, Glenn called one of his employees to find out if his brother had gone to work that morning. There was no word. He had not been heard from. It took another 3 hours to hear that he was OK. Three long hours.

We had visitors with us that day and we had planned on going to Disneyland. We could not help the Special Needs young man understand what had happened. When we told him that Disneyland was closed, he couldn't understand why and was very upset by it. THAT was difficult. One wanted to scream that people had died and we had to be careful, but he didn't understand that. It was then, I learned patience. THAT moment. I mean, the patience that comes with having a Special Needs child. I had patience in spades before that but I learned what it is to have to distance yourself from YOUR moment for a time, even if it is a moment shared by millions of other people, it was not shared by that one young man. He could not grasp it. And maybe he was better off. I had to repress my reaction and replace it with compassion, understanding and patience, while we tried to get him to understand that we could go some other time. Tomorrow? Probably not but we will see.

Honestly, I don't remember when we went. I know we did, but I don't remember it. I have the pictures but they do not illicit any memory of the event. I was too shocked still, too saddened. The only glimpse I have of the Disneyland day after the attack was of me holding onto to Glenn crying.

As the stories of the heroes of that day emerged, so did the flags. On every porch, on every car. The ribbons were everywhere too. I, naively thought, this changes everything and we will be more unified. It did, and we were, for a while. I am sure that in each part of the country the timeframe was different but in California, it lasted about 5 months. But even after 5 months, we were still bombarded by the joy in the streets elsewhere at the death of other human beings. To this day, that STILL shocks. A lot of things shock me about that event, but that is the strongest: Joy at death.

Over the years, many things have changed, and all things are still the same. But me. I will forever hold that memory with me. Because I will NOT let it go. I refuse to let it be a story in a history book. I remember it. I was changed by it. I was overwhelmed and consoled by it. I will not apologize for my tears this day. I will hold my children longer and be grateful for the experience life has yet to teach me. I reflect on the past, and I relate it to the future, so that I might learn and I might teach my children. How different might the future be because I honor the past?

Please...shut up.

I have really been avoiding Facebook as much as possible. Trying to get caught up on the family and friends and trying to avoid the other crap.

Today, after Bug's 2nd day of 4 seizures and not eating too well, and after a week and a half of watching him struggle just to walk, sometimes even sit up, I have found myself really resenting people complaining about...well...mundane things and people supporting them as if they lost something really valuable. I mean, really? Where the hell is the perspective?

I read the posts of people who have told me that Bug has his problems because I am not going to church, complaining about how horrible it is that their scrapbook page didn't win an award and yet, they tried really hard on it and it was beautiful. Or how I should just pray more (as if they know how much I pray) talking about how excited they are about the latest wizard/vampire/escapism novella/movie is being released. Correct me if I am wrong but isn't that idol worship of sorts? At the least it's giving credence to something that has a demonic undertone to it? I don't invite any kind of evil into my life, except maybe modern medicine. I have been hiding those people, maybe later I will get around to deleting them, friends, family or whatnot. I want to scream at them: shut up, I wake up in the middle of the night just to make sure my eight year old is breathing. I research the latest advancements with his condition, I prepare his cream and Ketocal and beg him to eat his favorite food so he doesn't lose anymore weight. I give him 4 medications, 2 times a day and think about how cool it is that it's not more. I follow him around to make sure he doesn't run into the door handle again, I check him daily for new bruises, because he won't tell me, and I plead for him to say Mama, just one more time. I wait by the phone for the Doctor to call, and every time I leave him with someone, I worry constantly. I have had friends think I am a horrible parent for taking 3 or 4 hours here and there to myself, and really, those people are just trying to avoid having to be thinking about anyone other than themselves. Believe me, I am always with my son, even if I am not sitting next to him. It goes deeper than other Mothers, it really does and the ones that argue that point...don't have a child with Special Needs. So...shut up. Don't complain if I ask you for help...it's a REALLY BIG FREAKING DEAL when a Special Needs Mom asks anyone for help, because she doesn't believe anyone can take of that child like she can, and letting go, is like turning over your heart AND your lungs to someone else.

And I don't complain. I may say: Dang, bad day. But the words: Why me? Why him? NEVER leave my lips or show on my computer screen. I mourn things he can't do everyday, and I look at the pictures of his happier days, and sometimes I cry. I don't cry in front of anyone and I don't create drama for attention. Even though, these things he can't do and these things he is in danger of daily are palpable, and not getting the best seat in the movie theatre, or finding out the my favorite author isn't writing anymore, those things, don't even make the list of truly lamentable things. Sorry.

Yet, I look at the lives of the people that place such importance on these things and I think about how miserable they must really be. If something that has no real effect on their lives, physically, is so devastating, then how much life are they missing? If they are so immersed in something that they comment more about that thing than the people in their lives, they must be unfulfilled.

I don't admire, worship, or give lip service to people I don't personally know. Dad used to always say: They sit to shit, just like you do (be offended, go ahead, it's my Dad NOT ME). Keep it in perspective.

So I have learned to find joy in little things as much as big things. I spend my time with people that I love, not that people I wish I knew. As too many people like to say: What would Jesus do? Would he go to HP8 or Camp Spike and Wave?

Easy answer. Harry Potter...is not real.

Now, I continue to wait for the Dulcolax to work so Bug can feel better. What are you doing?

I think...I am done.

I think I have finally seen the writing on the wall and I am done being nice. I routinely go out of my way for the people in my life and they repay me by treating me like I was SUPPOSED to help them anyway so why should they say Thank You? Or return the favor?

When I say I am not feeling well, I have a 101 fever and can't sleep. I get: Wah. Boo Hoo.

Someone else in my family can say: Oh no, I think I forgot to unplug the iron and it may have scorched the ironing board cover. And they get: OMG! I hate when I do that, try cleaning it with...or wow you are so lucky you didn't burn anything, how scary.

It was reinforced in spades the last two days how little my well being means to most of the people I know. Over-reacting? Not really. I have a list of examples that I won't share because I don't want to offend anyone. But suffice to say, I am done. DONE. Don't ask me for anything, I am gonna be as selfish as I want to be, if I can. Might take me a while to learn not to put everyone else ahead of me but hey...why the hell not learn? No one else feels badly about not being there for others so why should I?

I am done with the tears. I am done being invisible unless someone needs something. I am just done.

This is NOT a cry for attention. It's a resolution. Good Bye, old Nett. I probably will miss you but not that much since I will be all about myself.

The Flowers That Stick

I wrote this as a note on Facebook a while back...i just read it again and, wow, I like it. Who knew?

My home is covered in glittery things, things that sing the alphabet, little flowers that glow in the dark and things that if they get stuck on something, and they do, would need a nuclear arsenal to remove.

My home is filled with noise, humming, spinning things, laughter, and crying over things that are important to a 5 year old, but not so much to a 40 year old.

My home is filled with errands and my car sees me more than my bed.

My home is filled with soft things, things to sit on and things to cuddle with, things to throw and things to catch.

My home is filled with the people I adore, the people I would rather spend my times with than any other people in the world, and people that make me feel loved.

My home is filled with my heart. It may be messy with things that stick, and things that get thrown, and people that can't pick up what they put down, but it is my home, and it is my family, and I love who they are and who they will be. And in my home, I am the sticky that holds it together, and the laughter that lightens the day and the person that would give up anything to cuddle for a moment with person that needs me the most.

Those flowers I don't get, are not nearly as beautiful as the flowers that stick. My daughter is wearing them on her fingernails.

This Federal Angel

Mom just called.

Dad has been in the hospital for 3 days because he has an infection from his pacemaker surgery. He was so worried about leaving his co-workers high and dry, also about being out of leave and not getting paid. He was sure that the Insurance premium would not be paid and they would be stuck with medical bills. I tried to reassure him but he wouldn't really believe me.

Mom called his boss, Bridgette (apologies if I misspell), whose own daughter has been in the Hospital recovering from surgery and she told Mom to relay to Dad not to worry.

In a few short hours, Bridgette rallied the troops and rescued my Father. She called back East and got Helen to approve a Medical Retirement for Dad possibly beginning as early as October 1st. Someone will bring Dad his paperwork and get it all finalized for him.

On top of that (which has been in the works for MONTHS) she told him not to worry about the next two weeks. She said that his co-workers have donated their time to Dad. That he will be using their leave and will receive a full paycheck.

This is possibly the most generous and amazing thing I have ever heard of. This man, who has given so much to the service of his country is now seeing the rewards of his dedication.

Dad has over 45 years in constant work for the Federal Government. He has gotten up every morning at 4:45am and gone to work. Seldom did he take any time off. He has donated selflessly to make sure that the men and women of the armed forces are taken care of. That they have the equipment they need when they need it, and that the civilian corp also have what they need to do their jobs.

I doubt Bridgette will ever know how much she has done for my Father. How she has put him at ease with a few phone calls during a time that she also was feeling the burden of supporting her own family.

So do me a favor: Do not mock Federal Employees, EVER. Because those employees that make it happen are the salt of the earth and they are the unrecognized heroes of our country. They ask for little and give everything. They do not make the 6 figure salaries of the Congressional Page that works 5 hours a day, they *earn* what they work for and they take care of their own. They are not the wasteful tyrants that you hear about in the news. They believe that what they do, makes a difference.

This is my Dad. And he has assured an honorable legacy that needs to endure. And Bridgette, has seen to that.

Thank you Bridgette, thank you from the very bottom of my heart.

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.