Where do you go when you’re not here?

My daughter Nina started having “episodes” back in January. I called them episodes; she referred to it as “watching t.v.” so it wouldn’t alarm the two oldest kids, Landon and Ava. “I watched t.v. twice today” sounds less dramatic than “I blacked out.” Episodes, watching t.v., black out spells…regardless of what we call it, the medical profession calls it seizures

The type of seizures Nina has are called complex partial seizures. They may last for a few seconds, or a few minutes. She may have one or two a day, or a cluster of several on one day and none the next. There’s no body-going-stiff or falling-in-the-floor thing going on. The best way to describe it is an old cliche’—the light’s on but nobody’s home. If you didn’t know what you were witnessing, you’d probably think she was just ignoring you, or daydreaming. When she’s having a seizure, you can’t “shake” her out of it, or shout loudly at her to bring her out of it—believe it or not, this IS the first instinct when witnessing one. It has to run its course and usually lasts for seconds but can last for several minutes. Those are the scary ones.

And when she does come out of it, she knows she’s had a seizure but has no knowledge of the length, or what happened while in its clutches. She has no memory 0f the time away.

The Epilepsy Foundation says this about complex partial seizures: These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person’s eyes are open and they may make movements that seem to have a purpose, in reality “nobody’s home.” If the symptoms are subtle, other people may think the person is just daydreaming. Some people can have seizures of this kind without realizing anything has happened. The seizure can wipe out memories of events just before or after it.

And so I take a lot of pictures and I document the silly things the kids do—and yes, I post them all over Facebook. I refuse to let the seizures rob her of one second of these babies’ lives.

Of course there are things she’d probably rather not remember. Like Casey painting the wall with poop. Or Ireland getting stuck with duct tape to the side of the bed. Don’t ask.  Or any one of Ivy’s historic meltdowns. Or Ava’s broken arm. Or Landon’s disappointment when he struck out at bat.

But at least when she wants to look back at all these moments—the good, the bad, and the ugly—she’ll be able to.  Like any parent, you turn her head for a split second and you’ve missed the moment. And I miss them, too. My camera, or energy level, doesn’t capture every moment but I think I do okay in capturing a decent variety.

Landon and Ava know about the seizures now.They knew something was wrong and wondered what mom “watching t.v.” had to do with why she couldn’t drive anymore. The three youngest, Ivy, Casey, and Ireland, are still too young to know anything is different. They don’t really care who’s driving the vehicle as long as mom is riding shotgun.

 

5 thoughts on “Where do you go when you’re not here?

  1. An adult family family of mine started having grand mal seizures in 2002. Scary to witness. Had a total of 5 over the years and he only started remembering anything after the last two. He has been seizure free with medication since 2006 after we changed neurologists.

  2. love your blogs-you just make my days. I have Nina on my prayer list and hope that they will find something to stop these seizures-

  3. Lynn, thanks for sharing this post. I now have a clearer understanding of what your daughter goes through, and my heart goes out to you and your family. When you told our crtique group about your daughter, I thought the seizures came with flailing in the floor.

    I pray healing for your daughter, and what a great mom you are to capture her lost moments with the kids on camera. You rock, Lynn. I learn something new about you all the time.

  4. Lynn, she is so young for this to be happening and I know it has to really frighten you. Thank heavens that it doesn’t last for long, and that’s bad enough. I hope there is something the Great Physician can do to alleviate her problem… ♥

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