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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 for a fact since I've experienced that sentence when Leo was born.
But let me show you what having daily seizures actually looks like, and feels like. 
It looks like a bright and beautiful candle smothered in suffocating darkness.
It looks like a handcuffed prisoner where the hostage situation is taking place in his own body.
It looks like the movie Groundhog day but without the eureka moment and no happy ending.
What it feels like?
Utter helplessness.
Anger, grief, anxiety, all my old friends...


I don't believe anymore that this is the same landscape all parents see.
This fall has been filled with many challenges for our little lion and family.
Even though I have been pursuing many different seizure therapies and treatments for Leo over the past year, including surgery to install the VNS device, nothing so far has been a sure fix. The constant stress of this has definitely taken a toll on him and us.
On Monday we start yet another new drug, this being number seven of drugs we have tried. He still takes three different meds daily which help him from seizing all the time, but they don't help enough...he still suffers from five plus seizure events daily.
Although the VNS device does work; the magnet wand can stop a seizure when it starts, it just doesn't stop it from starting in the first place, or relieve the post-seizure "snowed" phase which is what makes school and basically everything so difficult. The seizure itself is short, under a minute, but the extreme lethargy and irritability after can last up to an hour, sometimes only being resolved after a full length nap. As you can see this makes most things like regular outings or basically life, pretty darn hard because seizures as a rule, don't usually call ahead so that I can plan for their arrival. So you guys who are wondering why I always turn down invitations to your kid's birthday party or whatever? It's not because I don't want to go, it's because it's impossible to go. So yeah, not really what most families have to deal with right?
In fact, we had a fun time a couple weeks ago when the VNS device was actually starting to create episodes of sleep apnea for Leo at night. Because where the vagal nerve is and where the electrode is placed, it can sometimes interfere with the vocal cords, and in Leo's case every time the electrode sent out a pulse (every 1.8 minutes) it would catch the vocal cords and actually pull them tight, creating a block in air-flow. This only seemed to really bother Leo while sleeping; so let's just say I or my little buddy, haven't had a solid night's sleep in a long time. Of course, as with all medical side-effect fall out that has happened to him: this is a really rare and unique reaction blah blah blah.
The worst part to all of this? Is watching how hard this kid tries to grow and learn and just be a normal kid. A normal kid who walks around all day with a freaking hell-monster lurking behind him, just out of sight.
It breaks my heart to see how hard he tries to snap himself out of the seizure because he wants to play ball or go outside or go see his friends...but not being able to, and then having to go lie down in a dark room, or ending up vomiting from migraine pain because the fall stormy weather wrecks havoc with the delicate pressure balances in his brain.
My poor little soldier. He's got such a heavy burden to drag through the trenches. And I can't do it for him, because you know I would, in a nanosecond, if it meant he could be free of this.
So no, I don't think being special needs is the same as everyone. No, I don't think that pretending we are all the same, or that our hardship is somehow less is the way to be, because after trying that for so long, I think it actually makes the efforts my son makes every single day seem less than the heroic feats that they actually are.
He's not like your average kid. He's not normal. He's not healthy. But he's also not special because of his sickness, he is special DESPITE it.  Not because of what the sickness does to him, or how it limits him, or defines him, it is just a measuring stick to show how incredible his strength, his determination, and his life force. And that is why we say "special" when we talk about special needs.








Comments

  1. Beautiful Anna. You inspire be so very much. Mu house is under contract as of tonight! We may really be neighbors very soon!

    ReplyDelete
  2. Just beautiful, Anna, and so moving. Leo is an inspiration to us all, and your love and care are as well.

    ReplyDelete
  3. Аннушка, дорогая, сердце дрожит читать твои "посты" и думать о вас и вашем малыше!
    Очень любим вас и, конечно, волнуемся. Стараемся молиться.
    Крепко вас всех целую. Лиля Колосимо (Париж)

    ReplyDelete

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