Wednesday, January 20, 2010

Why Seizures Are Scary

I feel like I should start this out the same way I start so many of my calls to family members: "Everything's fine."

We haven't seen any seizures since yesterday morning. Collin has been sleeping well and has been smily and fun whenever he's awake. Surprisingly, he hasn't even been very groggy from the extra meds, which is great. In fact, I can hear him through the monitor right now, sucking his pacifier, and I can't believe he's still awake.

I am finally starting to let my shoulders move down to their normal place and have stopped holding my breath as much, but I still feel fairly on edge. A lot of people have asked me what the seizures look like, which always strikes me as an interesting question, even though it's totally understandable. I had never seen a seizure before Collin came along. Most people envision the grand mal seizures that they may have seen in a movie or on TV - violent shaking, etc. - but Collin's aren't remotely like that, though they're terrifying in a different way. Like I said a few days ago, I do have video I could post, but it just seems too personal for some reason I can't explain.

Collin's original seizures were spasms, which I've described plenty of times: short, quick movement of the arms and legs shooting out, his eyes looking surprised, getting upset afterward. But these seizures are like a slow-motion rendition of those. It usually starts when we think he is asleep, which is part of what makes it so scary. He's laying there, looking so peaceful and sweet, and then his eyes slowly open and look upward and his face freezes into a frown while his arms extend outward, stiff and with curled fingers, and his back arches. It's like some kind of horrible back dive frozen in midair. He remains suspended like this for 15 eternal seconds in which I'm totally powerless to help him and just rub his head and talk to him even though I have no assurance that he hears me. Then he starts to blink and gives a big snort and wiggles around like he's been wrapped up too tightly.

So, after seeing hundreds of those in a few days, I start to think that I see the beginning of them all the time. Every time he starts to fall asleep, every time he is relaxing in my lap. Every time Kyle walks in the room, I think he's going to tell me that Collin is having seizures again. I dream about them. It's a very real kind of haunting.

The only thing to do, unfortunately, is to ride it out. As more seizure-free days squeeze in between me and those sickening moments, I stop thinking about them as much and I'm able to read Collin's cues more accurately again. It's not that I come back to reality - it's that my reality changes back to something less frightening.


  1. Thank you for posting so honestly, Annie. Watching you live out an honest faith in this time, though excruciatingly painful, is also beautiful in a certain way. I know I have learned so much about being honest from you.

  2. If I can feel your incredible spirit and presence by reading words on a screen, I have no doubt that Collin can feel it while he's in your arms.

    He doesn't need to hear anything.

  3. Annie - thank you for sharing this. God is answering my prayers today. Blessings, wisdom and guidance for you and Kyle as you head to Cin. Please keep us posted. And to Collin - keep up the good work, buddy!