Fighting

I have fought so darn hard not to let this epilepsy take over our lives, trying to keep our days as regular as possible. I think, or hope, that for the most part, I have done an ok job at it. There has def been times where i wanted to quit things....teaching piano, the kids' extra activities, taking them to the school we love ...there are definitely days where the last thing i want to do is keep up with "normal", let alone all the extras that constantly keep me in a flurry. Somedays I have to let myself take time off to grieve- like right now as I sit here and vent. There have also been things i have definatly let go. But overall, I have done my very best to give my kids the same life as I would have given them had I never seen a blasted seizure.

I don't ever want to be the type of person who milks a situation to get as much possible drama and attention as possible. Or use trials as an excuse to get out ot anything. I have been too close to too many people who do that.

It is my very worst of pet peeves.

For this reason I feel like I am being sooo ANnOyInG when i talk about our situation. Only a few people have ever given me a reason to feel this way- I admit it's 99% my own insecurity. I can't help it. I have had so many people in my life i can't believe, how can I expect people to be able to trust me? I say something and then think people are inwardly rolling there eyes at me... "Oh, this again? What a drama queen. get over it already....." even though I know most people probably wouldn't think those things, I still feel it.

I have become touchy and insecure in so many more ways than at I ever had any idea I could be. This is just one of them.

Over time, and especially lately, it has gotten harder and harder to NOT Bring it up. So i feel pretty obnoxious a lot if the time. I hate it. It's just that it is SUCH a constant part of every part in our life. Day and night. I wish I could explain just how automatically my brain has been trained to think "seizure..seizure...seizure...". It is like having a never ending song in my head. I try with everything to get it out, but 2 seconds later I am right back to humming the tune.

While I am here at home my thoughts go:

Where is Dawson? What was that crash? He is going to hit his head on the corner if he plays there. If I stay and fold the laundry here, will I be able to get to him fast enough? Is he walking like that because of his Meds? Is he going to walk normal again? Is he on the stairs? What could he play with that would keep him safe while I start dinner? Is that a side effect or is it normal? Where is he now? Was that his head that made that crash? Yep, here's a seizure. I am so glad he had his helmet on...how long is this seizure going to go? Breathe, Daws, c'mon, take a breath. Can he hear me if I talk him through it? Ok, it is over. Wait, is it over? Is he ready to walk? Where is he going? I wish he would use that hand. Is physical therapy going to bring it back? Is he going to be ok? What was that? Please stop climbing on the table Daws. Ugh, one of these times he is going to . ...can't think about it...How long has it been since his last seizure? Why can't I hear him anymore? What kind of damage is this going to have long term??? Don't think about it....where is he now? Is he having a seizure??

I want the thoughts to stop. Heaven knows I try. At least it's only Dawson now. When Drew was going too...? I really don't understand how we got through it.

I think I make myself function on the outside pretty normally but my thoughts just go and go. It makes me feel like a crazy person.

Sometimes I get so annoyed with myself and get so tired of it being a part of every minute of our day:

I get ready to go to the store and it takes 10x longer than it should have. In frustration i think .... ehhh! If only I could just get ready without having to keep one eye glued for seizure alert, maybe I could get out of here!! I am so tired of not being able to focus on anything for more than 2 seconds.

At the store I see another mom out shopping with her toddler and admire his hair. Here comes the greif again .... I wish I could style Daws's hair. I miss showing off his sweet blonde Mohawk. I wish he didn't have to be hidden by this huge helmet.

Through the store I get through the comments of the other customers. Kids pointing, "why is he wearing that?", someone else comes over and rubs it, sticks his finger in the holes, making Dawson scream. A man strikes up a conversation, someone he knew had seizures too..."keep your chin up, everything will be fine"... Don't tell me it's gonna be fine. I DO keep my chin up! How do you think I get out of bed in the morning?? He doesn't understand. he means well, shake it off Mari....

Next I watch a disabled store worker thinking... What kind of life are MY kids going to have? Will they be able to be who they want to be?

I check out at the register just as a seizure hits. As usual no one notices what's going on but me. The cashier looks at me impatiently as I hold Dawson with one arm and dig for my wallet with the other. Should I say he is having a seizure? Will they make a scene? I don't want to have to explain and start that conversation again. How long is this one going to go? I just want to disappear. Why did I try to go out?? It's hard enough staying at home.

I walk to the car and remember the time Drew seized here, the time Halle seized there. I drive back home, listening to Dawson seize in the back seat, and the familiar helplessness creeps in.

More memories replay.

Here comes the frustration at the doctors for not helping more.

The anger at the disorder itself for doing this to my innocent babies.

The loneliness and grief for how my life was supposed to be.

The anger at myself for not knowing how to do more ...

It's been so long going. Between the traumatic memories of 1,000's of episodes, the high-alert-state of the present, and the crushing fear of the future, the thoughts are always in, around and through it all. Fighting to stay in the present, reminding myself over and over to take one day at a time...that's how I survive. I know I have to let go of the past, have faith in the future... But that can be tricky when the present is such a constant, constant, constant, reminder....reminder...reminder...

It is such an inward battle:

Reminder.

I can do hard things

Reminder.

One day at a time.

Reminder.

I can be happy

Reminder.

Count the blessings.

Reminder.

Keep smiling.

Reminder...

Bleh.

i am just so tired of fighting.

maybe i really have gone crazy.