Skip to main content

Leo Demented



So as a shameless book nerd it perhaps comes as no surprise that the passage running through my head right now as I'm sitting and thinking about my son's seizures is the title of a chapter in a Harry Potter book (Order of the Phoenix in fact). I did say I was a nerd. Anyway, the name of the chapter is "Dudley Demented," and way back when I read it, (seriously way back...not last week for the hundredth time. Really..) I always got a chuckle from that title. Today though, I feel myself commiserating with the hapless and pathetic Dudley because Leo's seizures remind me of dementors; creatures of evil who suck everything good and happy from your soul. Can you tell I'm a teeny bit upset? A friend asked me today what I feared the most from this new trend of seizures and after a moment of thought, I realized what I feared the most wasn't hospitals or medicines or surgeries, though those aren't very good either, what I fear the most is that the seizures would steal my Lion Boy away from me. The Lion Boy who has been through so much and achieved so much throughout his five years of life can loose almost everything in the instant of a seizure. What makes him, him, is gone; his bright personality dimmed and suppressed by the out of control sparking in his brain. I hate it! What I also hate is that I don't have a magic wand with which I could summon a magical defense that would blast his seizures and my fears into oblivion. Instead I'm as helpless and ineffective as Moaning Myrtle. (Another character in the books; her name says it all.)



This video might be hard for some to watch, I know it is for me, but I was lucky enough to capture one of his seizures on camera and this is our reality right now and pretending it's not in denial land won't change it.
I haven't been in denial for so long that I can't recognize that the Lion Boy needs help. Unfortunately seizures that make my heart leap into my throat do not in fact, stimulate that same reaction for hospital personnel. In fact, I had the unfortunate experience the other day after a couple of days filled with useless phone calls to either missing or incompetent secretaries and being put on hold, of having a hospital minion tell me that her notes say nothing about Leo's case being urgent so she scheduled him for an EEG in October.  
O.M.G. 
Lets just say she knows it's urgent now regardless what her ****ing notes say. And Leo has an inpatient video EEG scheduled for this Wednesday. Not October. Yeesh! 
I like and respect all of Leo's doctors but getting through to them is much like trying to face-time someone on Pluto. 
Leo's new pattern of seizures, though not as horrible as the kind he had before, you know, the kind that didn't stop ever, still seem just as menacing to me as they escalate in frequency and intensity. 
Even though I'm all like seizures be bad, I'm also fearful of new meds and the snowballing side effects that they inevitably bring. How much more can Lion's little body take? How much more can I take?



Ever get that sneaking suspicion you might be caught in a giant spider web?!
It's not all darkness, no matter how I make it out to be.
We are doing our best and in between freaking out with worry, we are letting the summer take us. And we even smile too, once in a while.


And forget about it all and just ride the carousel over and over. "Whee" guys, it's the least we can do.
Perhaps that works just as well as a magic wand. 




Thanks for reading y'all and if you can spare an extra prayer or two for our little family and for the Lion boy, we sure could use them as we try to find our way through seizure/dementor land the next couple of weeks. 




Comments

  1. I'm glad you finally got through to them they Leo needed to be seen NOW. You'd think they'd listen more to the people who know these kids the best! You guys are in our thoughts and prayers!

    ReplyDelete
  2. Your family is in my prayers. I hope you get this sorted out soon!

    ReplyDelete
  3. First of all, he is such a doll. The voice! The eyes! Secondly, so so sorry that he and you are dealing with this new issue. :( Sure hope you get some answers, and solutions soon.

    ReplyDelete

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…