Tuesday, October 18, 2011

He is, I am, We are

I hate being repetitive. Thematic. I tell my students, Vary your writing. Don’t get stuck on one topic. Don’t be afraid to explore.
Yet here I am, stuck on one topic. Predictable. Boring. Thematic. Blogging about seizures again. Still, epilepsy in its nature is not predictable and maybe that’s what makes it so hard. That a child can be just fine one second, playing with a ridiculously huge collection of Thomas trains and in the blink of eye that same child can fall and start seizing in the middle of his trains.

Because of course, this was my evening last night. The same as other evenings. Did you know that his seizures almost always happen at the exact same time of night? We could set a clock to them. But different, because it’d been so long since he’d had a true grand mal seizure that those little seeds of hope starting to sprout.

Last night was more painful than other nights because Luke was the one who found Tommy seizing. Shane and I were in the kitchen. Luke was on the couch with his Leapster, Tommy on the floor with his trains. A four year old can be often dramatic, yelling and hollering like his hair is on fire when really he only wants to get my attention to ask me why clouds are white. But last night, as he came running into the kitchen, shouting my name, I knew. The fear in his voice was so real, so tangible, so much more than I ever wanted to hear in my four year old’s voice. He drug me into the living room and I had that horrible moment that always happens during seizures, where my brain forgets itself for just a split second and I feel like I’m above my body and I think, What is happening? Why is his face like that? Why are his arms twisted and his lips blue? And then I zoom back into my body, scoop him up, and talk to him. Tell Shane to look at the clock. Comfort Luke. Praise Luke. Calm myself internally. Hold my shaking child, exhale when the tremors stop, when he sighs, his eyes flutter open, then close and he drifts into that post-seizure state of unconscious, pale-faced sleep.

He’s so verbal these days, so aware of what words mean and how to answer questions. Last night I held him and said, Were you scared?

He nodded his head two times. Yes. Yes, mama.


linking with Just Write

32 comments:

*Lissa* said...

So, so scary. Hugs to you all, hon. xoxo

Adventures In Babywearing said...

I'm so sorry you have to live this right now. Bless Luke's little heart.

Steph

Crooked Eyebrow said...

I too am so very sorry that the word "seizure" even has to be said in your house.

xoxo

Lyndsay said...

Oh your sweet boys...

I'm sorry Erin.

Jenn said...

Good job, Luke! It's so scary seeing that, and I don't think it ever leaves you. Stay brave, all of you.

Kathleen Basi said...

You write what you must write, and sometimes you have things to work out in your own mind. We don't mind coming along for the ride.

It's so strange, how you can always hear it in someone's voice when it's true panic, when the drama is for real. Thank God for that. Otherwise what might we miss?

Hugs.

Sherry said...

Hi, I never comment, but enjoy your writings so much, but this morning when I read your post, my heart just went out to you and your family, bless Luke's heart that he realized what was needed at the most scary of times. I don't know or really just hate to think how it would effect my 4 year old grandson, but I would hope he would be just as aware as your Luke was.........

Adam said...

It's interesting that you'd comment on sticking with a theme or topic, because the thing that jumps out at me is how touching it is that, although you are equipped and strong enough to deal with Tommy's seizures, you never get used to them. You aren't callous to what he's going through or what Luke experienced. Maybe that seems obvious or automatic, but I don't think so. I can see how people in similar situations might allow their emotions to deaden over time (it happens). I'm impressed that you don't.

Also: Tommy saying he was scared just rips my heart right out.

pinkflipflops said...

((((())))

Kristen said...

Tears Erin :-( I can't even begin to think how scary this is for everybody, how brave and amazing both Luke and Tommy are. . . . . You are a strong strong person, I know you all will over come this horrible part in all your lives. I'm praying that it comes quickly.

CJ said...

Never fear being repetitive when writing about your mommy-heart!

Anonymous said...

My son just asked about you yesterday evening before we knew what happened. We talked about your post from June 13th. My heart goes out to you! We have been seizure free for over four years. When my son seized, they happened like clock work, fifteen minutes after waking. My youngest child witnessed our sons first seizure, my middle child called 911. I will never forget my children's eyes on that morning. You are in my prayers!

Julie said...

GAH! I keep holding out hope that each one is the last one, and I will always do so. SO MUCH LOVE to all four of you!

Kirsten said...

((hugs)) to all of you.

quicklikeabunny said...

sigh - so scary. ((hugs))

Minivan Mom said...

Hugs Erin.

Heather said...

it can be so much harder when they have words. sorry you all have to go through this.

Kristin said...

this makes me cry. i love you, erinny. I hope with you each time that it's the last one. it breaks my heart each time I read that it wasn't. *big hugs*

Corrina Beana said...

That last line, killed me. When you're dealing with a chronic or reoccuring issue, it's pretty awful when they get old enough to express their thoughts about it. The last few months, when my 2.5yr old has experienced her monthly fevers of 104-105, her little voice tells me "I all better mama" even though she's burning up, because she wants to be better. You are in my thoughts and prayers!

ZDub said...

My heart. Love you guys.

Abra said...

you have two amazing boys right there. so, so sorry that you are experiencing this. it's making you one incredibly, strong mama!

xoxo

Martina said...

My heart hurts for your sweet boys. But they are both strong like their mama. Praying that these end soon.

Foursons said...

Oh sweetie, I'm scared for all of you! I can't even imagine the terror y'all feel. I hope a doctor can fix this soon.

InTheFastLane said...

It doesn't really get easier...ever, does it? Breaks your heart over and over again. Repetitive? Maybe. But, it is your reality.

Hugs.

Elaine A. said...

I had to process this post for a bit because my heart hurts so much for all of you and I just wish I could make it go away and.... oh.... how I WISH.

You're truly in my prayers...

Kaycee said...

Oh Erin. That hurts my heart. That Luke has to be so scared. The nods from Tommy made me cry.

I saw your picture of the day and its caption and was thinking of you after that. (I completely agree about the Popsicle rule, well done. The drink too.)

Heather of the EO said...

It's totally fine to be repetitive. I wish this weren't your story to tell, but it is and you are so strong and brave and so is he, even when you both just feel scared. And then, go ahead and NOT be strong and brave for awhile. Fall apart. Because this is just hard.

So much peace sent your way...

Becky said...

Oh sweetheart! How yucky (couldn't think of a better word) that you all have to go through this. My heart breaks for you all.

LOVE LOVE to you!

keli [at] kidnapped by suburbia said...

*hugs* so many of them

Sara said...

Oh, tears. That last line rips my heart out. Poor baby and poor mama. So sorry for your brave boys. Stay strong.

Unknown said...
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anymommy said...

Whoops, that was me signed in wrong. Just wanted to say: Loving you all and holding you tight out here in Spokane.