Skip to main content

Time Seized (An Amendment)

This is a brief amendment to the previous post: Step In Time.  I realize tonight, that I forgot to write about something else that happens in time. Not about when time is fast or slow, but when it crashes. When time freezes in a horrible way. When time seizes uncontrollably, your heart beats blur like the wings of a hummingbird.
 I'm still reeling from a shocking experience with Leo yesterday afternoon which totally brought this home to me. After a completely normal morning and nap, I noticed Leo suddenly developing a complete left sided weakness. He started tilting over, not moving his left leg or arm when tickled or prompted. He was acting anxious and clingy. My stomach sinking, I pulled out his emergency med so that it would be on hand. But even though I was watching for it like a hawk, for the next half hour or so, his left limbs were not jerking. So I'm ashamed to admit I totally panicked. Visions of brain bleeds, strokes, shunt failures were racing through my head,  thoughts of all the freaky tragic unknowns, had my brain highjacked. I was the one in seizure here. I had no idea what to do or what was going on with Leo.  Nika was in the bath, Justin was out running an errand, and here was Leo, slumping over and with eyes rolling back in his head.
Time crashed. I crashed.
Then like a little bit of sun peeping through a cloud, I gathered my wits enough to repeat the Jesus Prayer over and over, and over and over. In English, in Russian, in anguished mom speak I prayed. Leo, who was at this point held in my arms like a baby, would try smile lopsidedly but reasuringly when my eyes met his. My brain uncrashed and within minutes we were away to the hospital since at this point Justin returned and got the girl dried and dressed. Half way there Leo's foot finally started to jerk. We pulled over and gave him the med, and soon he was still and dozing in my arms. You might wonder why I say "finally." Well the jerking we know, we can deal with that. It is the other symptoms we aren't familier with. If it is just his regular seizure, it's ok then, we can deal with that, but the thought that it might be something else was what was so frightening.
We got a hold of the resident on call for neurology and she came down to the ER lobby to give Leo the once over. Then she explained that what Leo had was another version of siezure, called an atonic seizure which then turned into his regular simple partial seizure.  Gee thanks for preparing us for that one! Just as I thought we had his "typical" seizures all figured out, something like this has to happen.
Can I say it strongly enough, how seizures are my number one enemy? Give me a surgery any day, something that I can prepare for, something that I can really wrap my mind around. Give me that any day, over seizures. Seizures that I can't predict, that always broadside me and make me completely loose my cool - my courage. How totally and completely they rob my child of his personhood, and lay waste to the sanity of those around him.
I hate them. I hate them. I hate them. But I mean to conquer them.
Even if I have to study every single book about seizures and the brain ever written, I refuse to give up. Just like we have to batten down the hatches when a big storm approaches, so I mean to do when a "brain storm" (as Nika calls them) threatens my little man's horizons. If time must crash, I mean to know every single trick out there to reboot the system and get time flowing normally and peacefully again.

After a fairly decent night's rest, Leo was back to his normal self today and I am again grateful for that new emergency medication that actually works twice now without a hitch. It also doesn't seem to last very long or give him any side-effects. Tomorrow we will meet with his neurologist (FINALLY) and I hope to bring up all these points and more with him. Wish me luck that I will get some answers...

Leo and big sis monkeying it around on the couch.

We are not going to let anything get us down, right little man? Because after all, you are one tough cookie.


  1. This is sort of crazy, but Avram had the EXACT same thing happen last week. Usually he just goes straight to the foot-jerking, but I got him up from a nap last Thursday and his whole right side was just limp for half an hour. I panicked just like you did. About half an hour later, his foot finally started twitching and I gave him the Diastat. It was so bizarre, and frightening. He seems back to himself this week. But I am right there with you mama, seizures make my blood boil. Prayers your way!

  2. Lord, Jesus Christ, Son of God, have mercy upon us.
    Lord, Jesus Christ, Son of God, have mercy upon us.
    Lord, Jesus Christ, Son of God, have mercy upon us.


Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…