Wednesday, January 13, 2016

To Washington

The fear of losing him is inescapable.

They tell you things like, "Everything happens for a reason", and "God only burdens the strong", and "You're a good mom; he doesn't even look sick."  As though I could stop it if I wanted to.

They don't know how it feels in the middle of the night when Tiny starts nodding and shrugging.  When all I can do is hold my baby and cry and whisper, "I'm sorry, Baby, I'm so sorry..." and count the seconds until it's over.  To hold him and stare at the ceiling for the next hour after he's nodded off again, watching the clock as the hand winds itself past the three, past the six, past the nine, and finally, past the twelve, because if he has three seizures in an hour, I have to give him a medication that could cause his breathing to stop... and then call 911 so the EMTs will come.  They -- with their empty platitudes and cliches -- don't understand the meaning of the word "insomnia".

They most certainly don't know what Tuberous Sclerosis is.  I'm a medical student, and I'd never heard of it.  "TSC is a rare genetic disorder categorized by mostly benign masses formed on the soft tissues, primarily the brain, lungs, heart, kidneys and eyes," the doctor told me, empathy radiating outward from his voice like a slow, heavy fog.  Two weeks after the seizures started, a month after his second birthday, that was our diagnosis.  It pained the doctor to give it to me; I could see the hurt behind the glint of his lenses.  I lost the feeling in my fingertips and toes momentarily, the rest of my body buzzing as my mind raced through my family medical history.  "Two thirds of all cases are mutations," he supplemented, seeing where I was going through the mental files.

Well, wasn't that ironic?  I can't win the lottery to save my life, but my kid hits the jackpot before he's even born.  Angry?  Yes.  Scared?  Yes.  So I did the only thing I could do in that situation:  I hugged my son tightly and asked, "What can I do?"  To save him.  To help him.  To keep from crying.  To keep that light from dying out of his eyes.  Medicate.  Suppress.  Test.  Watch.  Be vigilant.  Hope.  He won't be allowed to sleep alone because the seizures come at night.  He may require special education, therapy.  He may not be able to keep up with his little brother in school.  He may not have friends, because he may be different.

I replay that memory over and over.  I tell myself every night as I lay down on my floorbound twin mattress that tonight, there won't be any seizures.  Tonight, the medicine that makes him so grumpy and tired will work.  Tonight, I will hold him, and he will snuggle against me, because we both want the comfort instead of need it.  And tomorrow will be a better day: a seizure-free day.

Everything happens for a reason, they say.  I want to know the reason.  Why?  Why us?  Why him? Why me?
God only burdens the strong, they say.  I'm strong because I have to be.  No one loves my son like I do.
You're a great mom; he doesn't even look sick, they say.  Well, he is, and the powers that be must be cold and calculating to let this happen to someone so amazingly beautiful and innocent and full of promise.

Tonight, as he sleeps next to me, I'll cry, so that I don't cry tomorrow.

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