Tuesday, April 19, 2011

Places We Cannot Go

Seizures have to some extent become a routine thing around here-- not a topic I ever imagined would be run-of-the-mill when Jeremy and I started talking about having a family.  Usually Connor's seizures don't last more than a minute or two, but last night he had one lasting a terrifying sixteen minutes.  This is by far the longest seizure he's ever had. 

He's caught a bug of some sort and is running a low-grade fever, which often causes his seizures to spiral out of control.  Though I've seen him have literally hundreds of seizures over the last few years, last night I learned that they still have the power to shake me up, to make me wonder if this is it; we've run out of time. 

We've been told on repeated occasions that Connor's seizures could potentially be extremely dangerous for him.  He often stops breathing during them, though thankfully that was not the case last night or I would probably be writing a very different post for today.  Connor's actually been doing really well in the last few weeks and I'd started to relax a little bit, though the facts of Connor's probable shortened life-span are always resting somewhere in the corner of my brain. 

Seizures are only one of the risk factors that make up the long list of reasons doctors give Connor a guarded prognosis.  I try not to think about them all too often; I wouldn't be able to function if I dwelled on them.  But those thoughts come crashing back whenever we have an emergency like this.

During his seizure this time Connor was actually aware of what was going on, he was blinking, squeezing my hand and looking at Jeremy and I as his body jerked out of his control.  He was obviously terrified, though his face relaxed a little while we sang his favorite songs to him.  He was conscious until the last minute or so, and then his eyes snapped forward and his hand fell limp. 

The seizure ended so abruptly that the sudden absence of movement unnerved me.  Connor lay totally still and unresponsive on the floor, his eyes wide open and fixed, pupils completely dilated.  And most terrifying of all; my shaking fingers couldn't find a pulse on him.  I thought for one awful moment that his heart had stopped.  Then he blinked, sucked in a deep breath and began to cry. 

I knew after that he'd be okay. 

And that meant I'd be okay too; that I could set those feelings aside for another day when I'd need them.  Once again we'd been granted a reprieve.  Once again our son had returned from that far place he travels to where we cannot follow.  I hope we have many more years with him before he takes that final journey.  He is a child enjoying life far too much to be done living it.

So after the emergency crew left and my son lay across my lap in the deep sleep of the utterly exhausted, I thought back to the moments of his birth; the first time he lay limp and blue on my chest.  Warm, and solid, and utterly still.  The doctor raced him over to where the NICU team hovered while Jeremy and I were left waiting in devastating limbo.  And then finally, after a few agonizing minutes and against tremendous odds, we heard a single, wavering cry-- our child coming back to us.  It was the most beautiful sound I'd ever heard.

It still is.  It still is.





Jess blogs about daily life with her family at Connor's Song.


  1. When I read some of the posts here, especially yours, I realize that I am hiking a trail, while you climb Mt Everest. My heart goes out to you, and I wish you many years of love and life with your son.

  2. I cannot begin to imagine what it is like, living life with this sort of Sword of Damocles hagning over your family. I am sorry this most recent seizure activity has been so extreme. I am sending you prayers and good thoughts. I am always so in awe of your ability to stay focused on the gifts of the life you have instead of railing against fate fo the challenges faced.

  3. Floor time lite mamaApril 19, 2011 at 6:28 PM

    What a gorgeous moving post
    So glad your son is okay

  4. Wow. Such a frigtening and moving post, but also one filled with love and hope.

  5. I have only the tiniest taste of this, and it's through reading your words and those of others on similar journeys. I've been reading your main blog for a few years now. Every time something notgood comes up with Connor's health, I worry. This is nothing compared to what you and Jer go through, and I don't mean to imply my well-meaning blog-reading stranger concern is anything like a parent's love and worry and hopes. But I still really really do hope there are many many more years of wonderfulness ahead for all of you. Thanks for letting the internets share a bit of the ones that have happened so far.

  6. Your exquisite writing brings me with you on your ride of emotions, right at your side. While we've never witnessed one of our daughters' seizures (they've always happened at school), I've always, always been so scared about them. After reading your post, I know that my fear is well placed, but because you've shared with us I'm not as scared as I used to be...I'm very glad that Connor is OK, and I'm impressed with your ability to emote your feelings. Thank you!

  7. Wow. As a veteran seizure witness, I am used to the emotions, stress and surges of adrenaline, but this is a beautiful piece of writing that was harrowing to read. I am grateful that Connor is all right. Blessings to you.