Running on Empty. Or, seizures suck

I find, in the quiet of a long, dark night that I am more attuned to some noises in this house of ours. My late night ramblings come to a sudden halt when I hear unexplained bumps and whines.  

Usually, in this house of three boys and their dogs (mom and dad don't count, now do we?), sudden muffled sounds are expected. Welcomed even, as a sign that the guys are sleeping, dogs are restless, or some combination of the two. Not this night, though. 

Attuned to the soft muffled sounds coming from my youngest son's room, I tiptoed to the door and peered in at him, finding his limbs spread across the bed, one foot hanging limply. Other than stiff muscles, I don't see anything out of the ordinary for a moment. 

And then comes the sudden, gasping breath. 

And my world comes to a silent halt. 

Logan, you see, is one of three special guys in this family of unique and quirky folks. Logan and his brothers share the same rare genetic disease, called Rieger Syndrome (or Axenfeld-Rieger Syndrome), bringing with it additional diagnoses of autism and epilepsy. 

And lots of other fun diagnoses. The point? Was that Logan's weird breathing was a well-learned sign of impending trouble. 

Logan's breathing was a reason to be concerned, because it meant he was either having a seizure or his breathing was comprimised. Since he stops breathing during many of his seizures, I tend to react the same to that sudden, gasping breath regardless of whether it is because of a seizure or because of breathing problems.

I hate it. 

That night, it signaled at least four separate seizures, spread out over 6 hours in the overnight hours. I forced myself into the next room instead of by his bed, because unless they are close together or last longer there just isn't much I can do except make sure he's safe.

By the time he fully relaxed into sleep I had, finally, reached the big "E" in my own tank. I found it hard to consider going to sleep. And when I finally stumbled, exhausted and shaking, into our room, my husband chided me.

I was, perhaps, a little harsh in my response. I told him he was welcome. Logan, I explained, had been having seizures. I didn't see why we should both lose out on a night's worth of sleep. My generous announcement was met with him turning on his side and snuggling back into sleep.

I should point out that my husband is a great guy who regularly takes the midnight shift of seizure watch. And after his supportive snoring I determined the next shift was definitely his. 

Is it really so hard to see why I'm running on empty? Why caffeine and I are intimately related?


I still hate seizures, though.  

Katrina Moody

Wife, mom, writer, editor, non-profit founder and enthusiast, dreamer

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