Aiden's Journey

One Little Boy's Battle with Dravet Syndrome



Posted by Nicole on May 1, 2011 at 3:02 PM

There’s a sliver of space between reality and the world as we perceive it that is so small that you sometimes forget it exists. It can expand, of course, but for most of us it waits in obscurity, swallowing the thoughts you feed it like a black hole, keeping them squirreled away in its cavities until you stumble upon the crack and it trips you, causing you to question on which side reality truly resides.


My thoughts tend to settle on how Aiden is different from other kids his age, no matter how his day has been. I don’t mean for it to happen, and I don’t wallow in them – Half of the time I am pleasantly surprised at how easy it is to celebrate these differences. How precious is the fact that this giant 45 lb creature still thinks he’s a lap dog? He’ll curl his long limbs up underneath him, not noticing how they stick out on all sides of my small lap, nuzzle his cheek to mine, turn the corners of his mouth into a dreamy dazed smile, and settle in, completely oblivious to the fact that our heads are at the same height, I can’t see around him, and my thighs instantly fall asleep under his weight.


He is so excited to see his brothers at the end of the day that he stumbles out of the stroller, clods over in his light-up Spiderman boots (though it is nearly 70 degrees outside), and gives the 9 year old a big bear hug. If the 9 year old’s friend happens to come out of school first, well, he receives the same bear hug and smiles out of surprise while looking around to make sure no one else has taken notice of this embarrassing fiasco.


I love his differences, and they’re fairly easy to spot even without knowing he suffers from seizures. But then that crevice between reality and what I perceive to be reality comes up and I question my own sanity. Obviously he has special needs – I’m not blind. But how significant are those special needs? Do his charm and easy-going nature fool others into thinking he’s not as needy as he truly is? Do they fool me? I observed him during preschool one day with a few other school district team members in preparation for next year, and could see them breathe a sigh of relief at how easy he seemed to be to educate. He skipped along through each activity with a team member’s help, never putting up a fuss, complaining, or needing medical attention. It was too loud to hear him talk, so he honestly looked like any of the other kids in the class, if perhaps a bit less stable.


But then, what are “significant” special needs? Emotional/Oppositional behavior? Inability to relate to others? Medical needs? Severe learning disabilities? I guess I don’t know. My perceived reality is that someone who is dependent on me for every daily function (getting dressed, feeding, breathing sometimes, toileting, even getting in the car) has “significant” special needs. The fact that he, if left to his own devices, would walk around stark naked not because he thought it was funny or more comfortable like any other 5 year old, but because he truly doesn’t understand the necessity of clothes, even in the dead of winter, seems to be significant.


Perhaps I’m with him too much to truly know. Maybe I’ll just step right on top of that sliver of space and force it back into oblivion. Life is a lot less confusing when you convince yourself you’re sane.

Categories: April-June 2011, School

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1 Comment

Reply Paige
9:38 PM on May 2, 2011 
Well said, Nicole.