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.