An Enchantment

   Sometimes I think about Lincoln’s seizures and I try to imagine what they’re like.  They usually happen between 4 and 6am.  We’ve learned that he’s usually three minutes into a seizure before he wakes up.  Needless to say, he wakes up terrified and he yells for us.  He can’t remember them afterward and only gives us crumbs when we ask what they are like.  Once he did say that he doesn’t know where he is or whom he’s with when he wakes up seizing.  Beyond that, I know nothing about what it’s like for my son to have a seizure.  I do know that he’s terrified.  I can only imagine that he wakes up with no bearings – the bottom has just dropped out of his floor and he’s falling down an endless hole with nothing to grab onto.  That’s probably why he cries out for us and in the case of his last seizure pleads, “Please don’t leave me alone.”

    When we get to his room (we leap out of our bed, sprout wings, and fly) I believe he stops falling because he knows we’re with him – but he’s still not safe.  He’s still so afraid.  He can answer basic questions and can see us through unfocused, dilated eyes.  But sometimes this doesn’t last.  Sometimes he slips away from us, regardless of how tight our grasp.  At this point he can no longer answer questions and I’m not sure if he can even hear or see us.  But the further away, or the deeper into himself he goes, the less fear he seems to have.  At least that’s what I need to believe.  I can’t believe that he’s unconscious and still so frightened.  While he stares, unseeing, at the ceiling, a small panic grows in me because I’ve lost him.  Even if it’s only for a few minutes, it’s a lifetime.

    I’m reading a book about noble magicians in nineteenth century England, called Jonathan Strange and Mr. Norrell.  Part of this book is about the fine line between Faerie and our world.  Without warning English men and women would find themselves in the bleak world of Faerie without trying or even knowing it existed.  Their surroundings would simply shift and they’d find themselves in this unknown, dark and desolate land when seconds ago they were conversing with friends or walking down a bustling London street.  These characters were filled with fear and dread because they had no knowledge of where they were, or how they got there, and most frighteningly – how to get back. 

    I’ve been wondering lately if this is what Lincoln’s seizures are like for him.  And when he loses consciousness and goes somewhere else, is this where he goes?

    The English in the nineteenth century initially knew that they were enchanted while in Faerie.  For a while, before the act of thinking became too clouded and difficult, they remembered that they had to keep their wits about them in order to find their way home. Otherwise the spell would prove too powerful and bind them, unthinking and only half living, in Faerie forever.

    There is a window of time when we can pull Lincoln back to us.  Sometimes he’s strong enough to break from the enchantment on his own.  His unseeing eyes blink, he refocuses and he’s back with us.  Other times he goes too deep, the pull overpowers him, and we need to give him strong medicines to break him from this spell.  On rare occasions (although it happened much more often when he was smaller and weaker) the medicine is just not strong enough and we have to call for paramedics to take him to the emergency room where doctors work frantically to pull him back.  Seconds count because the deeper he goes into a seizure, the harder it is to pull him out, and he can only fight for so long.

    When at last he returns to us he is exhausted from battle.  His head throbs, his eyes are dark and he sleeps for hours afterward.  Who can know the hell he’s been through?  If you look at him out of the corner of your eye, you see a bruised boy, his head wrapped in gauze, black eyes, a swollen face, an arm raised in traction and casts on both legs.  But when you look again you see him sleeping.  Sleeping off the hell that he won’t remember once he wakes up.  He’s fought for his life and we can only stay on the other side of the divide.  We can’t follow him.  We can only hope that he hears us calling to him and pray that he remains strong enough and never goes in too deep, so he can always come back.

    Sometimes when my head spins from all the second guessing that goes with planning this surgery, I ask myself, what would happen if we don’t go through with it?  If we just stop now?  And I can’t answer because I can’t think straight.  Then he’ll have a seizure and I immediately remember, like a bucket of ice water thrown in my face.  Every seizure injures Lincoln’s brain and prolonged seizures can damage his heart and other major organs.  He can’t ever be alone for one of them.  Someone needs to be there to allay his fears and tie a string to him so he’ll always be able to find his way back.